Max the Magnificent

Day +1026: Christmas, 10, Day +1000

2012-01-22T08:26:00.007-05:00

It's day +1026 for our Max Man and so much has been going on lately that I haven't even had the chance to write! We had a couple of HUGE milestones in December, along with Christmas, which required much celebrating and then, getting 2012 kicked off has been lots of fun too. So, I have much to catch up on here!

To begin, Max continues to do very well. The ween of his cyclosporine has gone very smoothly to date. We actually took the second little tick down last week and so far, so good. After his first tick down, his engraftment stayed stable at 89% Ellee so, Dr. Davies was pleased and was ready to go with the second decrease. Needless to say, we are beyond thrilled that the ween is occurring and going well.

In addition, we have more good news to report. You may remember that we have been working with an endocrinologist to watch Max's growth and hormone levels, etc. and that we had some concern after we initially met with with her four months ago regarding his growth. The good news is that he grew a 1/2 inch in the past four months!!! We are also seeing some minor, slow changes in his teeth, another good sign. We are hopeful that the ween of the cyclosporine is helping all this somewhat, along with adding more calories into his diet.

Now to the line-up of fun that we experienced in December! We had a couple of great evenings spending time with our families on our favorite Christmas traditions. The Meyer family spent an evening in downtown Cincinnati, ice skating and visiting Santa. The Sherwin family enjoyed our neighborhood's luminaria event with us and a walk around the neighborhood with yummy hot chocolates. We spent our traditional Christmas Eve with Matt's family at Gaga's (his mom's) and had a ball, as always. Unfortunately, some relatively minor sickness decided to strike us over the holidays. Matt was diagnosed with pneumonia on December 23rd and spent a good deal of time in bed, resting up over the break. Then, the boys both came down with a nasty stomach bug on the night before Christmas...bummer!! After a night of throwing up, opening presents wasn't quite as much fun as it should have been and we had to excuse ourselves from the family get togethers this Christmas but, thankfully they both recovered pretty quickly and were ready to go for the big fun we had planned the rest of the break.

The day after Christmas, December 26th is Max's birthday and this year was a big one --- 10!!! He had about 6 buddies over for pizza, cake and basketball games (imagine that) on the evening of the 26th. Then, on the morning of the 27th, we headed out for our much anticipated party with all the cousins at the Great Wolf Lodge to celebrate Max turning 10 and his other big milestone - day +1000! We all had a great time swimming, playing video games in the arcade, having a huge sleepover and just running around the place! We spent the rest of the kid's Christmas break resting and recuperating from all the fun we had.

January has been busy as well! We kicked off the New Year in our typical way with a party and sleepover with all the Meyer adults and cousins. Then, Matt and I took a big trip with a bunch of friends to Las Vegas last weekend! It was a special getaway to celebrate one of our friend's 40th birthdays and we really enjoyed having the chance to cut loose a little bit!

Kicking off the year for Max's Meals has been keeping us busy as well. We had a Christmas Eve brunch again this year and are gearing up now for the Superbowl and Valentine's Day meals in February. Thanks to generous donations from many, we were also able to provide some great stuff to the Cancer & Blood Diseases Institute this year at Christmas including a flat screen tv, video games, toys and iTunes gift cards. We have set our meal schedule for the year and plan to provide 12 group meals, as well as some "Pick Me Up" items in the parent lounges this year. We have also been able to provide numerous cakes to patients the past few weeks. Most have been for birthdays but, we have also provided some for Cell Day and end of radiation celebrations as well. Finally, mark your calendars for our 2012 fundraising event - "Kick Up Your Heels for Max's Meals", a family dance party, to be held on Friday, April 20th at 7 pm at the Anderson Center! More details and an official "Save the Date" notice to come soon.

In addition to all this, we have some other very exciting news...we bought a lot and are planning to build a new house soon!!! This is pretty much the realization of a dream for Matt and I and a wonderful indication of how well Max is doing. Before Maxer got sick in early 2009, we were looking to move. Our house has been great for us and we love our neighborhood but, we were outgrowing it. Now, with a 65 lb. dog and three growing kids, we are really outgrowing it! So, we were thrilled to learn a few months ago that some beautiful lots right around the corner from here and down the street from Matt's sister, Monica's, had gone on the market. It is a perfect situation for us - the kids will stay in the same school, we can build what we want and we can take our time doing it! Of course, adding in the tasks of getting our house ready to sell and building a new, custom home is a bit overwheling and a lot of work! But, we know it will be worth it in the end.

With all this and working 20 hours as well, you can probably see why I haven't had the time to blog in awhile! However, I am committed to keeping this thing updated - mostly for my three little ones in the future. It has been a great way to document our life journey so far, particularly during some super difficult times. I know it will be awesome for Max, Alex and Ellee to be able to sit down with this thing one day, with their own kiddos on their laps, and tell them about what we all endured and how much it taught us about truly living our lives and treasuring every moment. Now I want to use this blog to document the good times, the happiness, the fun, the celebrations of life in the Meyer family!

Thank you for continuing on this journey with us and checking in!

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +966: So Much to be Thankful For!

2011-11-23T09:51:00.001-05:00

It's day +966 and we just wanted to send out a quick Happy Thanksgiving note to all of you! We have so much to be grateful for this year...we are overwhelmed with gratitude! At Max's most recent bi-monthly appointment last Friday, we received exceptionally good news from Dr. Davies. She has begun the wean of Max's cyclosporine! You may know that Matt and I have been anxious about this for some time and have taken her advice to be patient and wait for the right time. Apparently, to our surprise, this is it!! The road ahead is still unknown but, Dr. Davies assured us that she does not anticipate that we will see issues with the wean. It will be very, very slow. We will go down 0.2 ml every 2 months and watch his progress. If all goes smoothly, he should be done with it within about 18 months. A long time but, fabulous news. There may be points where we have to pause for longer than 2 months and watch things for a bit and there may even be times when we need to go back up on the dose for a bit. But, no matter what, this is progress...real progress for Max.

It is awesome and truly miraculous for us to be able to imagine a future for Max without cyclosporine, with immunizations and with good health again. This latest step is taking us in that direction. We are beginning to "tie the bow" on the top of the BMT package.

Thus, as we head in to Thanksgiving, we are filled with immense gratitude. Our Max is continuing to make fabulous progress, we are all together to celebrate and relax on this wonderful holiday and life is just beyond great!

I read something recently from one of the support organizations that we have found to be extremely helpful over the past few years, BMTInfoNet.org. It was written by their founder, a 22-year transplant survivor and was called "From Hope, Springs Life". I found it to be very profound and thought I'd share it with all of you:

It started with Hope. Hope that a bone marrow, stem cell or cord blood transplant could conquer a life-threatening disease.

Then came Courage. The Courage to undergo one of the most difficult medical procedures imaginable.

And finally, for so many, new Life. A Life full of opportunity to enjoy more precious days with family and friends.....to see your child thrive, to kiss a new grandchild, to grow old together with someone you love.

This is the promise of transplant.

Pretty much sums it up, doesn't it?

We are all so excited for tomorrow! The boys are mostly looking forward to their Turkey Bowl with all of the Meyer cousins and uncles at Turpin High School's football field. I am greatly looking forward to sharing our gratitude by giving back to the families of the Cancer & Blood Diseases Institute with a Max's Meals Thanksgiving Luncheon tomorrow. We are all looking forward to spending time together relaxing and enjoying the blessing of family. And to top all of this off, my brother, Mike and his wife, Heidi just welcomed their third child into the family this morning! We are thrilled to have a new neice and Sherwin family member and can't wait to meet her down in Morgantown, West Virginia soon! Another Thanksgiving blessing!

We are grateful to all of you for your continued support and love and wish you all a very Happy Thanksgiving!

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +942: Caught up in life!!

2011-10-30T08:36:00.000-04:00

It's day +942 and I am finally getting around to blogging! It's been over 2 months since my last blog, primarily because we have just been so, so busy enjoying life and living it up!! Max continues to do very well and is really enjoying 4th grade and gearing up for basketball season!! The pace of our lives around the Meyer house has gone from about 0 to 60 in a relatively short amount of time and we are all trying to keep up, although we are beyond grateful to be so busy and able to enjoy life once again.

Fourth grade has been quite challenging for Max, as I have heard it is for many of the kids. At his school, Wilson, 4th grade is the first step into the secondary part of elementary school. I had no idea what that meant before now but, we are sure learning! Essentially, it means multiple subjects each day with multiple teachers and multitudes of homework!! Lots of projects, big tests and much more time spent on school work than ever before. We spend at least an hour to two hours every weeknight evening working with Max on homework. He is additionally challenged in that he is still making up for lost time for sure. Being home school for 18 months while you are sick just is not the same as actually attending school with your peers for the same amount of time. But, he is making great progress and really beginning to get the hang of 4th grade.

Alex is doing fabulously in 1st grade, although the transition to being there all day, 5 days a week has been difficult for him. He did really well for about the first 4 weeks and then, all of a sudden, he started having little melt downs and wishing he didn't have to go to school everyday! We think it set in at that point that he had to do this now 5 days a week! Always a hard reality to accept, especially when you couldn't leave home just a year and a half ago! But, he is now finding his way again and getting more comfortable with the whole routine.

Ellee is loving preschool! She goes three mornings a week and has made lots of new friends at school. She is a little social butterfuly these days and is really growing up! Ellee just celebrated her 4th birthday last Monday and Alex celebrated his 7th birthday on October 13th. Hard to believe!! There are lots of pictures from both available in the fall album at the right side of the blog page if you'd like to check them out. And, speaking of birthdays, Max's 10th birthday is coming up on December 26th, followed by his day +1000 on December 27th!!!! Now is that cause for celebration or what??? We are planning a very special family shin-dig and going all out with all the cousins at the Great Wolf Lodge!!!

Being back at work for me has been great so far. I recently went up to 20 hours or two days a week in the office and I am really enjoying having a little piece of "me" back in our lives. Overall, the kids are doing well with it too. We have had some rough spots along the way - a couple of my work days where the boys nerves caught up with them or something and they were "sick" but, seemed to feel much better about an hour after I said that I would stay home with them. :) But, given everything we have been through as a family over the past couple of years, that is to be expected. This fall has really been huge leaps back to reality in comparison with where we have been the past few years so, some rough spots is nothing!

Matt and I actually got to get away in September for a weekend, which was really nice. We went to Atlanta to a bone marrow transplant survivorship seminar and it was beyond fantastic! There were probably about 500 attendees, all of them either transplant survivors themselves or caregivers/family members. It was so amazing to be in a room of that many people and to realize that they had all experienced something similar to what Max and our family have experienced. I shed many a tear at that awesome realization. Without modern medicine, that room would not have been filled...and now, we are moving far beyond just surviving. The objective of the conference was to teach survivors how to not just survive but, to thrive beyond transplant. It was so educational and inspiring for Matt and I. Unfortunately, they do not have a parallel session for pediatric patients yet so, we did not bring Max along. We knew he would be extremely bored and were glad that we had not brought him. We are hoping they will add a session like this in the future so that he too can come and experience the comraderie and shared brotherhood that we did.

There were about 15 other pediatric parents/couples at the conference along with us and we really enjoyed getting to know many of them and sharing our journeys. We came away with three main areas of concern that we wanted to explore more deeply with Max's caregivers and we have since been doing that. We learned that some of the chemotherapy that Max received has been shown to cause hypothyroidism and some brain damage that can lead to learning and behavioral problems. That was obviously a difficult thing for us to learn as we had no idea when we administered it to Max but, we also had no choice at the time. That is why research is so important...to find new chemos with less side effects that still accomplish the same goal. So, we have been working with an endocrinologist over the past month or so and, although Max's thyroid gland appears to be working as it should, we discovered that he has not been growing like he should for about the past 10 months. At this point, we are increasing his caloric intake in hopes that will give his body an extra boost to get growing and also testing him for a few other food allergy type issues. Obviously, this is very important as we know that Max is going to be very small already, based on genetics. We certainly don't want him to be any smaller than he is already predisposed to be! We are also waiting to have him neuro-psych tested to see if there has been any damage to his brain that may cause him to have some special learning problems that we can put plans in place to help him with.

The other major thing that has been going on this fall was the Walk for Children's Hospital on October 15th. We ended up having an absolutely gorgeous fall day and a fabulous turnout and are proud to say that, thanks to our wonderful support community, we were able to raise over $10,000 for Dr. Davies bone marrow failure and pediatric cancer research! That brings our three year total to over $30,000!!! We are thrilled to be able to provide this much funding to help future children through cancer and/or the bone marrow transplant process and into survivorship! Additionally, we had a ball again at the Walk, watching Max and all the kids enjoy the day and were very blessed to have our dear friend, Lynn Merk, join us. We know it was a very difficult thing for her to be there, remembering how much Tony loved being there and we were so honored that she came and that we were able to raise money for research in his memory. There are lots of pictures available at the link on the right side of the blog page if you'd like to check them out.

Max's Meals has continued serving as usual! We are actually about to head out for our Halloween luncheon in just a few hours here today! Additionally, we have been providing cakes and balloons for months now to patients celebrating their birthday while in the hospital and have a Dairy Queen ice cream cake delivery this coming Tuesday for a young man going through bone marrow transplant that is turning 18 that day! We are now working on extending this offerring to include a full meal, along with the cake, for the entire family and are also planning to offer cakes or cookies to help patients have a "Cell"abration on their bone marrow transplant day (aka Cell Day). Serving in these ways has brought lots of joy to all of us and is always a wonderful reminder of where we have all been and what is truly important. We appreciate all of the support that all of you have provided to continue to make Max's Meals a reality.

Obviously, life is busy and full of great moments around the Meyer homestead! Not a minute goes by that we are not eternally grateful for how well Max is doing. Thank you all for continuing to follow along with us on this journey and for your unending love and support. More soon...or maybe not so soon...as soon as I can take time to stop enjoying life with my family and write!!! :)

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +878: Sensational Summer & the Start of School

2011-08-27T10:07:00.003-04:00

It's day +878 for Max and things continue to be good for him, although he is spending his Saturday morning up in bed. Things have caught up with him a bit this morning and he is just exhausted. We've had another big week. School started on Wednesday for Max and Alex - Max in 4th grade and Alex in 1st. They have both done extremely well! In fact, my biggest worry has really been Alex this week since this is his first experience with going to school all day, five days a week. Max did amazingly well. He was actually so excited about school starting that he has been bouncing off the walls a bit all week, driving Matt and I a bit crazy, although we are THRILLED to see him so happy. It's worth all the crazy, over-excited behavior to see him so elated to be back at school.

Alex has handled things well too, although he is definitely going through a big adjustment. I helped with the first grade lunch time on Wednesday and Alex did look quite a bit like a deer in headlights throughout lunch. Poor little guy!! Entry into the real world through 1st grade really is quite a shocker for the kids, I think. By yesterday, Friday, he seemed to be getting more into the groove already, though and I suspect by the end of next week, he'll be doing just fine. No tears so far, which I am extremely grateful for. He did ask me one day last week, in nervous anticipation of his first day, "mom, if you cry, do you have to go to school?" Sweetest thing.

Ellee is very anxious about her school starting, given that her big brothers are back now. She will be going to three mornings of preschool and has been telling everyone lately, "I start after Labor Days." She definitely misses her brothers when they are gone but, we keep ourselves quite busy with one thing or another and the time seems to fly by so far.

Work for me has gone even better than I could have hoped for. The adjustment for everyone has seemed pretty smooth thus far. The kids did wonderfully over the summer since they got to spend the one day that I am in the office right now with their Aunt Molly and cousins Andrew and Jacob. They had a ball every day they were with them and that really helped them get re-adjusted to me not being with them every minute. Now that school is back in session, my wonderful neighbor, Karen is watching Ellee for me when I go into the office and getting the boys off the bus and watching all three of them for about 2 hours before Matt or I get them. Ellee and Karen had their first full day together on Thursday and had a ball. They played like crazy, swam and just enjoyed each other. Again, things went better than I could have wished for. She got the boys off of the bus after school and everyone did fantastically. We are so blessed to have Karen watching the kids. As she and I talked later that night, we agreed that things are just falling into place like they were meant to be this way. So far, going back to work at GE has been wonderful for me and the entire family. I will be upping my hours to my former 20/week at the end of September so, I am optimistic that things will continue to go as smoothly as they have so far. I am truly blessed.

Speaking of blessed - we had a sensational summer! It was our first "normal" summer in three years and we made the absolute most of it! We spent tons of time at our swim club; made a trip to Kings Island courtesy of a wonderful group, the Dragonfly Foundation; spent a day at Coney Island (the worlds largest re-circulating pool and amusement park here in Cincy) with our cousins and Aunts; attended multiple sports camps (XU basketball, Marvin Lewis football, Jay Bruce baseball); rode scooters and bikes at the local skatepark and our favorite indoor skatepark, Ollies; went to Reds games; went to cousin Jimmy's wedding in Kentucky; and had a fantastic family vacation with the Sherwin side in Canaan Valley, West Virginia!!! We were busy and enjoyed every single minute of it! I have included some photo album links on the right side of the blog page which have lots of pictures from all this fun in them if you are interested. It's no wonder that I have not blogged in almost two months!!! We've just been having too much fun!

As things are settling down a bit with the start of school, we are beginning to put our Max's Mighty Mob team together for the Cincy Walk for Kids event to benefit Children's Hospital on Saturday, October 15th at Coney Island. We are honored to have been selected to be one of the featured walk teams this year so, if you received a Walk registration packet, you saw our picture and story inside. There will also be another article in the For the Children magazine that the Hospital produces coming out soon and there is a story on their website as well at the following link:

http://www.cincinnatichildrens.org/give/stories/ftc/archives/fall-2011/maxs-mob.htm We would love to have all of you join us for the Walk or support us with a donation, if possible. You can do either one by visiting the Max's Mighty Mob page at http://giving.cincinnatichildrens.org/netcommunity/maxsmightymob Hope to see you there! We are also planning a garage sale fundraiser soon and will have more details on that event shortly.

Max's Meals has also continued to keep us busy this summer. In addition to Mother's Day, Father's Day, Fourth of July and Just Because meals for the families of the Cancer & Blood Diseases Institue (CBDI), we also served three meals (one per month) to the families staying at the Ronald McDonald House and provided two catered meals to the campers of CBDIs special summer camp. We loved doing all of this and have gotten more and more people involved in serving these meals with us! Our small but mighty team of fundraiser planners has begun meeting about our event for next spring and we should have more details coming about that soon also.

As you can imagine from reading all this, we are all on cloud 9. Life is good, really good! Given our journey with Max and all that we have experienced, we could not be appreciating all of these blessings of good health, wonderful family and friends, and fun times more. We are all living every moment to its fullest and loving life! We now know all too well how quickly things can change and how important it is to live for today.

Thanks for continuing to check in on us and for your continued thoughts and prayers. More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +829: The Circle of Life

2011-07-09T14:48:00.000-04:00

It's day +829 for our Max-Man and he is doing wonderfully. We just couldn't wait to share some good news with all of you today...our new neice and cousin, Mallory Elizabeth McGough arrived yesterday afternoon to proud parents, Matt's youngest sister, Sarah and her husband, Ryan.

The circle of life has never been more present in our lives. In the midst of mourning for Tony and grieving with our dear friends, the Merks, we welcome Mallory into the world. Life is precious. Never have we known that more.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +828: Heavy Hearts

2011-07-08T07:25:00.006-04:00

Today is day +828 for Max and although he continues to do well, the Meyer house has been filled with heavy hearts this week. Our dear friend, Tony Merk, went to be with Jesus on Monday evening after a 2 year and 8 month battle against brain and spine cancer. He was just 6 years old.

I sat at the pool watching my three precious children swim on Wednesday, surrounded by healthy, young children and I couldn't help but think about Tony and his family. As I sat there, I felt like I lived in two different worlds - one where children and families are healthy and happy and another where they are not. Over the past 2 1/2 + years of Max's journey, we have seen so much heartbreak through the loss of so many children - Andrew, Matthew, Ethan, Kenna, Natalie, Jerrod, Troy. It is so sad and so unfair. There is not one positive thing about losing a child.

We have also seen multiple miracles through Max's journey, including his very own. Kids that have been healed and restored to good health from the brink of death. It's difficult to understand why some children, like Max, receive this blessing while others do not. I have thought about that often and decided just to be grateful for Max's health at this moment.

Later today, Matt, Max and I will head to Tony's visitation and tomorrow morning, his funeral. As I'm sure you can imagine, these will be extremely difficult experiences but, we wouldn't miss them for the world. We love the Merks and loved Tony and want to be there for them during this tough time. Max has been very impacted by Tony's passing and very much wants to be a part of celebrating his life and supporting his family. I am proud of him for doing this and know he is learning valuable life lessons by being there.

Our hearts are filled with sorrow for Tony's parents, our dear friends, Lynne and Rick and for their sons Alex, Ben and Max. Life without Tony physically here on earth will be difficult for all of them. They are an amazing family and are doing their best to embrace this new journey that lies ahead. We know they have a hole in their hearts and will forever ache for their son but that they are comforted knowing that he is looking down from above with Jesus and forever with them in spirit.

For Tony and for all of the children that we have known and lost to cancer and other blood diseases over the past 2 1/2 + years, we are going to honor them by treasuring every moment of our lives together. After all, that is the greatest lesson that we have learned throughout this journey - live in the moment and treasure it. Life is a gift and good health is a blessing. Don't forget it.

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +818: Some Leaps

2011-06-28T22:57:00.005-04:00

Today is day +818 for Max and he continues to do well. We have not been back to the hospital to see Dr. Davies or have a CBC/labs drawn since my last post and I believe that is a first!!! An entire month, hospital free!!! Wow! Progress. We are now on an every-other-month schedule so we don't even have to go down until July 22nd! It's wonderful in so many ways and scary in so many other ways!

I wanted to write tonight because there have been some neat things going on in our lives and I truly feel like we have been taking some leaps lately. By that I mean that we have been baby stepping back into reality for over a year now, taking things one small step at a time, adding in more and more activities, more and more reality, little by little. But, suddenly, we are beginning to make some bigger steps, some leaps, and it is pretty exciting. It's also pretty scary and I have to admit that I have been full of emotions lately. But, onto the leaps...

Last week, Max and Alex spent 28 hours playing basketball with Xavier University coaches and players!!! Yes, you read that right...28 hours!! They attended the REAL XU basketball camp. Last year, you may remember, they went to the Little Dribblers XU camp which was only one half day long. They loved it and have been asking me about attending the real four day, all day camp this summer ever since. So, Matt and I thought about it a lot and decided to go for it. We were concerned about Max's stamina...I mean, it was 7 hours of basketball every day for four days in a row! To me, that seemed like a lot for a kid that didn't have a bone marrow transplant two years ago! We were also concerned about little Alex since he hasn't been away from us all day yet, given that his kindergarten was only a half day this past school year. But, we knew that the two of them would be together and that it was XU basketball, their passion. Given that, we knew they would persevere! And they sure did! They LOVED it!

Each morning when I dropped them off, Ellee and I would stay for a while to be sure they were settled in (in fact, we were usually the last parents to leave). The boys never looked back...I don't even think that they knew that we were still there each morning! They both quickly made new friends on their teams and got to know their coaches and played their hearts out. The highlight of the camp was the first evening, Monday, when I came to pick them up. Alex was the very first camper choosen as "Camper of the Day", an honor bestowed on the hardest working, most enthusiastic and cooperative camper in each age group, each day. He got to play a game they called "Go For It" where he had to make baskets from different shot lines, deciding whether to move on and "go for" more prizes each time he made a shot or stop and keep what he had already won. He ended up going all the way and sinking all three of his shots to win ALL the prizes!! The campers all cheered "you the man, Alex" and he was all smiles! It was fantastic to see him get the kind of recognition and self-esteem boost that he so deserves!!

So, onto the leap part of this camp experience. For myself (and Matt) this was HUGE! We have left Max at school all day, obviously, but only after extensive conversations with his teacher and the administrators at his school about where things stood with him, what should be done in an emergency, etc. In this camp situation, I pushed things at the beginning of the week to be sure they knew Max's history and his current status and that someone would be watching over him each day but, that was it! I had to leave him with people that I did not know and that did not know him well at all. It was scary and each day, to be honest, I couldn't wait to get there and pick them up, just to know that they were alright. I had to tell myself many times each day that I need to do this, I need to let him go, I need to let him have his life back. But, it was hard. It was a leap for all of us!

Now for the other big leap that we have coming up - I am returning to work at GE. It's been over 2 1/2 years since I left there, essentially overnight, to attend to Max's medical situation. They were extremely gracious to me and left me on a leave of absence for almost 2 years of this time, not even filling my position. You may remember that last fall, GE called, asking if I was ready to return for my 20 hour/week job and, in honesty, I said that we just weren't ready yet, that we didn't know what the school year was going to bring for Max and that we just needed more time. I knew that I could not commit at that point to something outside the house. Thus, last fall we officially parted ways and my job was posted.

However, in March, my former co-worker, now the person running the Ecomagination team in Marketing that I had left, called. They had not been able to fill my position and he wanted me to come back. He told me that they were willing to offer me whatever flexibility that I needed to make it work to return. Woah!! I was awe-struck. I had just settled into the idea of being focused on home here for awhile and, all of a sudden, this opportunity. So, Matt and I took quite a bit of time to think it through and ultimately I decided to "go for it". I feel it's an opportunity that I cannot refuse. I loved working at GE for over 13 years in the past, especially at the Eco job I had left. I was finally following one of my personal passions in my work, learning lots about what was going on in the eco world and how GE, a maker of aircraft engines, was adapting to it. It was extremely flexible before and they were offering to make it even more so if I needed, to make it work.

So, July 18th, I will be heading back to GE, part-time, to my Ecomagination Marketing Program Manager role. I'm starting back very slowly for all of our sakes. I'll be working just 10 hours a week, 1 day in the office and the rest from home, through the summer and late into September. Once the boys are settled back at school, I'll move back up to my 20 hours/week and go out to the office 2 full days. I have worked it out with my wonderful boss to be able to get the boys on the bus each morning for school so, I won't get to the office until about 9:15 or 9:30. I am hoping that it will be the perfect fit for all of us.

Obviously, this is a leap for us. I am filled with mixed emotion. One moment, I am thrilled to be heading back and anxious to get started. Another, I am sad that I will not be focused on the kids and Max's Meals. But, overall, Matt and I believe that this is a perfect fit for our family at this point in time. We are ready for this leap. We are ready to "go for it" and give it a try. I am ready to have some of the real me back!

At one point in time, Matt and I thought that if I went back to work, it would be too "normal", like we hadn't learned anything from our journey with Max or changed our lives as a result. However, more and more lately, I have come to realize that our lives are totally changed as a result of Max's journey. Every moment, I think so differently than I did before. I truly realize what a gift that each and every moment of life is. I do my best to take my worry, which I must admit is there constantly, and turn it into love and life. I don't dwell on it. I live in the moment. I also realize just how much control each of us has over our own behaviors. We cannot control what happens to ourselves, only how we react to it.

I realize that our experience with Max has made us view many things much differently than our friends and peers and sometimes that is tough. There are just a lot of everyday things that we don't worry about...they just don't matter to us. At times, I really do feel like a new girl in town. We were so out of the loop with our friends for so long and now, we can feel so removed at times from "normalcy" still. It can be a challenge. I also realize now just how difficult that the past couple of years were. I honestly don't know if we will ever do anything as hard...I sure hope we won't. These revelations give me so much strength and confidence. I feel like I can do anything I set my mind to and I believe that Max does too.

To make sense of all this rambling, the other big leap that I believe is happening right now is that Matt and I really feel like we are beginning to navigate the world of BMT survivorship with Max, Alex and Ellee. As a family, the reality of the past two + years is sinking in and we are beginning to come to grips with the fact that Max, and all of us, have a path ahead of us as well. For so long, we thought that we just had to get Max through this BMT and get him well. Now we are realizing that was just the beginning of this new journey for our entire family. We have all been impacted in so many profound ways through this experience. With all this in mind, Matt and I recently made plans to attend a BMT Survivorship Seminar in September to help us learn more about the physical, psychological, social, learning, etc. impacts of this BMT process on Max and our entire family. I am sure that it will be extremely helpful to us and very enlightening.

I am really going on and on tonight with this post and I apologize. There has just been a lot in my head recently and I wanted to share it. We have been taking some big leaps lately...big leaps toward a real future for Max and our entire family and it is awesome and, at the same time, somewhat scary.

Beyond all this, things have been exciting and busy with both the hospital and Max's Meals. The video that Max and I made a few months ago for Children's was recently released for use by new patients and their families. You can view it at http://www.cincinnatichildrens.org/visit. Max is only in it for about 2 seconds, unfortunately but, I did get a bit more time than that! Those of you in Cincinnati or that supported us in the Cincy Walks for Kids walk for Children's last year will be seeing lots more of us too! We were selected to be the featured family for the Walk this year so, our story will be in many of the publications from the hospital (and probably the picture at the top of this post) leading up to the event in October. We'll be pulling a Max's Mighty Mob team together again soon to walk that day so, stay tuned for more info on that fun! Max's Meals has been keeping us busy as usual too. You can read all about our latest ventures on our website at www.maxsmeals.org. We have several upcoming activities that we are looking for volunteers to help with so, please let us know if you are interested!

We would like to ask all of you for some special thoughts and prayers tonight for our dear friend, Tony Merk. He has been through such a long, difficult battle and it just wages on for he and his entire family. Our hearts ache for the suffering of Tony and his family and we pray everyday that they will experience a miracle of healing as we have with Max. You can follow Tony's journey with us at http://www.carepages.com/carepages/TonyBoy. We love the Merks!! Pray ~ Hope ~ Believe for Tony!

Thank you for continuing to check in on us and keep up with our journey. We are thrilled to be sharing these leaps with you all tonight and hopeful that these great steps will continue long into the future.

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +790: Major Milestones

2011-05-31T06:14:00.006-04:00

It's day +790 for our Max-Man and life is good...really good! I apologize for not updating in nearly two months but, we have just been too busy having fun to take the time!!! Max continues to feel and look great, although we remain in close contact with the hospital and continue to monitor things on the inside.

I have been wanting to update for some time but, felt highly compelled to do so after the amazing weekend that we just had. It was opening weekend at our swim club here in Cincinnati and we were all looking forward to it! We hadn't been there in three years since Max was not allowed to swim in public pools until fairly recently. It was wonderful to be back and to let all three of the kids enjoy this summer tradition of childhood. Best of all was seeing Max there. He was unstoppable!!! Matt and I could barely keep track of him as he cruised around the pool with his cousin Will and some of their best buddies. Multiple times throughout the weekend, Matt and I would be swimming with Alex and Ellee, only to look across the pool to see our Max jumping off of the high dive!!!!! This is a 10 foot board so, it is no laughing matter!! I have not tried jumping off of it in some time but, the last time I did, I nearly climbed back down! It is intimidating! But, not for Max. He would jump off the low dive or the high dive and go right back into the line to do it again, and again, and again!!! He had the greatest grin on his little face that I have ever seen! He even did a front flip off of the low dive a few times over the weekend. In all that we have been through, watching him jump off those boards felt like one of the most major milestones that we have reached with Max. Here we were in a super crowded pool, with many strangers all around him, watching our Max just loving life, enjoyring himself as much as possible, all from across the place!! It was awesome. I kept thinking, "if you didn't know what that kid has been through, you would NEVER know!!!" Just what we have dreamed of and prayed for for so long.

The icing on the cake for all of it too was what Max said to me a couple of times. We spent a few hours on Sunday and Monday at the pool and both days Max commented, "Mom, this is so much fun!" On Sunday when we got home, he said to me, "Mom, I can't believe how many kids I know go to our pool." and went on to list the different people that he knows that he was excited to see there. Then yesterday, Monday, when we got home was my favorite comment, "Well, Mom, another 11 board day for me!" (meaning he had jumped off of the boards 11 times both Sunday and Monday). Just awesome!

We also enjoyed some great time with our families this holiday weekend. We had a cook-out at Aunt Sarah and Uncle Ryan's on Saturday with the whole Meyer clan. The kids enjoyed some yummy smores which you can see all over my messy Max's face in the picture included here. We are all getting very, very excited for the arrival of baby girl McGough (Sarah & Ryan's first) in early July. It will sure be a blessing to have a new life around again! We also got to hang out with my family last night and enjoyed watching the kids have a scavenger hunt, courtesy of Papi (my dad) and play various games outside.

Despite all of this "normalcy" and wonderfulness, Max's health situation remains at the forefront of our thoughts, as it probably will for the rest of our lives. We have to watch his sun exposure, as you all know, so we are going to have to figure out a new routine this summer so that we can enjoy the pool as much as possible without putting him at any risk. We are hoping that gobs of sunblock every two hours will do the trick, keeping him safe while letting him enjoy the heck out of the boards and everything else at the pool.

At Max's last monthly appointment the first week of May, we were thrilled to learn that Dr. Davies was ready to let us go to an every other month schedule! Unfortunately, however, Max's Nurse Care Manager, Kathy, called two days later to say that we would have to come in for labs (a blood draw) in two weeks because his kidney levels were elevated! Dr. Davies and her team are always monitoring multiple different body systems through Max's blood, including his kidneys. The cyclosporine (immune suppressant) that he remains on is difficult on the kidneys thus, they keep an eye on their function, as well as the level of cyclosporine in his body, to be sure that they are striking the right balance. It's a delicate balancing act as we need the cyclosporine level to be high enough to protect Ellee's marrow and give it time to mature, while not allowing Max's old marrow to gain any strength and/or cause him any damage to his kidneys, etc. Thus, as a result of this slightly elevated kidney level, Dr. Davies took the cyclosporine dosage down just a tick and asked us to come back in for labs to check his kidney levels again in two weeks. We were just there last Thursday to do that and haven't heard yet what the results are. We are pushing fluids as much as possible at the same time, of course, as always, to try to help his kidneys flush through the medicine as well. I never realized how hard it can be to get a 9 year old to drink!!! Anyway, besides the kidney level elevations, Max's blood results look awesome! He continues to have an essentially normal CBC (complete blood count - the three cell lines of his blood) and good immune function. We just maintain the close relationship with Children's to be sure we are protecting his graft from Ellee, while at the same time protecting all of his body systems.

So, as you can probably surmise from reading this, although Max is doing great and back into doing just about everything he did prior to his diagnosis, his health situation remains complicated. When people ask me, "so, how is your son doing?", I usually respond that he is doing fabulously, that he is back to being a 9 year-old boy but, that he still has a road ahead of him. We are not done with his bone marrow transplant process yet...we still need to "tie the bow on the top of the package", I say. But, we are worlds from where we were in the winter of 2009!!!

This week is a big week here in the Meyer house! It's the last week of school for Max and Alex and they are beyond excited for the festivities that accompany that! Today is Field Day at their school so, I will be up there helping the kids enjoy different games and fun activities and will join them both for lunch on the lawn. Ellee will be hanging out with my mom so that I can do what I need to help and she can relax at home. Thursday is the last day of school and our neighborhood always makes it super fun. We will greet the kids with cupcakes and water balloons at the bus stop and then they will all jump into a neighbors pool in their clothes and swim the evening away! It is always a highlight of the year that all of the kids look forward to and a great way to start the summer.

We have been very busy around here the past few months. I was swamped with the Clubs & Clowns event that we had for Max's Meals the first weekend in May and really have spent the rest of the month recovering and writing thank you notes to all of the amazing supporters that we had for the event. It was highly successful and fun and well worth all the effort that we put into it as we raised nearly $7,000!!! We also received our first grant from the Cincinnati Golfers for Charity last week so, we are off and running on our next big step with Max's Meals which is to offer the inpatient families birthday meals. You can learn lots more about what is going on with Max's Meals by visiting our website at http://www.maxsmeals.org/ anytime! We also spent lots of time on different sports over the past few months. Alex played baseball, soccer and basketball this spring and Max played flag football so, we have been busy running between practices and games, just like most families with kids our ages.

As the school year wraps up for us around here, we are again reflecting on everything that has happened in our lives the past few years. It is absolutely amazing...miraculous, in fact...to see how far Max has come. Our life perspective is so changed for the better. We do not take a single moment for granted. We realize what a gift it is to take part in everyday activities, like swimming, jumping off a diving board, having a cook-out with people you love. Not a moment goes by that we aren't grateful for our many, many blessings. We are all on cloud 9 with life right now and won't be down from it anytime soon!

Thanks for checking in on us!

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +736: Two+ Years & Fabulous Florida!

2011-04-07T13:10:00.007-04:00

Today is day +736 for Max, 6 days and two years since his life-saving bone marrow transplant on April 1, 2009! Wow! He continues to do fabulously! We all enjoyed a wonderful vacation in Florida last week for Spring Break and life couldn't be better.

We spent our vacation in Marco Island and visited with my 91 year-old grandma (my dad's mom) who lives there year round. My mom and dad had been down there since January for the winter also, for the first time ever so, we stayed with them this time in their place across the island from my grandma's and had a great time just hanging out with them. We really had one of the best weeks of vacation that I think we have ever had. We all just enjoyed being able to do what we wanted to do, when we felt like doing it! We swam, fished, went to the beach, ate yummy lunches and dinners out, even went to the local farmers market. The boys, Matt and my dad loved playing basketball every afternoon on the shaded basketball court at the local island park and even got in a few rounds of baseball at a local field. We spent some great time visiting with "Great" Grandma and, all in all, we just had a wonderful time.

What made this vacation particularly special was that last Friday marked the two year anniversary of Max's transplant. We were thrilled to be able to spend this day together, down in Marco, celebrating our miracle. We began the day with Max's favorite, Dunkin Donuts (thanks to my dad) and enjoyed eating them from the chickee hut at my mom and dad's place while watching the sun rise above the ocean and the dolphins frolic around. Per Max's request, we spent the morning in the pool at mom and dad's and then spent the afternoon at the local park playing basketball again, followed by a dip in "Great" Grandma's pool. We capped off the special day with dinner out and ice cream in the chickee hut. Matt and I could not have imagined a better way to celebrate. We watched as Max and Ellee hugged and kissed each other and our three kids danced around in the chickee hut, eating ice cream and acting silly. Our miracle continues every day...the two year anniversary of it just gives us a chance to acknowledge it more directly. I have posted all the pictures from our trip on the sidebar of the blog if you're interested.

Beyond all this excitement and fun, we had a busy March between Max's basketball, a visit from the West Virginia Sherwins (my brother and his family), Max and Alex's bowling league, our nephew Carter's 1st birthday, a trip to the circus, Alex's baseball and basketball practices beginning, even Max and I appearing in a video that Children's Hospital is making (more on this to come when it's finished)! Max's basketball team finished up the season with a loss in the semi-finals of the tournament. Max was heartbroken after the game and shed some tears and Matt and I comforted him, knowing that it was a good lesson in how to deal with disappointment. Later that evening, Matt said to me, "It was hard to see Max upset about losing that game...but, all I could think about was how glad I am that my worry right now is about how to be sure he's ok with losing a basketball game!" We both agreed that we've come a long way and it's so great to be back to more "normal" worries these days.

Max's March appointment with Dr. Davies brought continued good news. His counts remain in normal ranges and his engraftment continues to be pretty steady at about 85%. No changes to his medications at this point - in other words, no beginning of the wean of the cyclosporine - but, we remain patient, knowing the time will come when Max's body will be ready for that. Until then, we'll take good counts and good health and all the wonderful blessings that come with that!

The Clubs & Clowns event for Max's Meals & More has been keeping me very busy of late. We have had some absolutely fabulous things happen in relation to this event and we are getting very excited about it. I wanted to share my favorite story from the event planning with all of you because it has been the most validating thing that has ever happened for us in relation to Max's Meals. A few weeks ago, I received an email from a Matt at Sara Lee, here in Cincinnati, asking me some questions about the Clubs & Clowns event. I have a small group of friends helping me out with the event so, I assumed that someone knew this person and had contacted him about a potential sponsorship. To make a long story short, Sara Lee is donating virtually all of the food (hot dogs, smoked sausages, buns, desserts) for the event!!! While that is incredible news, the story of why is even more incredible...Matt (the Sara Lee guy) has a one year old son that had a bone marrow transplant last fall. They were in the hospital on Halloween when we served our meal and it meant so much to them that they have been following Max's Meals ever since! His wife got my post on Facebook saying that we were looking for sponsors for the event and told Matt. He contacted me and said that he and his wife wanted to be sure that we know how much the meals mean to the families on the floor and that Sara Lee wanted to donate all the food! His daughter was visiting the hospital on Halloween and was on cloud nine that she was able to take a Max's Meals goody bag home with her that day! :)

I'm sure you can see why this story is our favorite. We have been honored by the numerous donations and great support that we have received from companies all over Cincinnati in preparation for the Clubs & Clowns event. I am sure that it is going to be a great time for all! The golf scramble is going to include quite a few kids and the picnic/party to follow will include a DJ, live singing entertainment, clowns, face painting, balloon animals, kids games, a bouncy house and more! We are praying for good weather and a great turnout and hope that you all will consider joining us, if possible! The event is May 7th and you can learn more about it or register to attend by visiting our website at http://www.maxsmeals.org/events-calendar/clubs-and-clowns. Hope to see you there!

Memories of many of the tough experiences that we endured with Max two years ago continue to flood our heads lately, even as we celebrate Max's two year anniversary post-transplant and the amazing miracle that we have witnessed. While these memories can be painful and difficult, we are thankful for them and for all that we have learned as a result of Max's journey. We never want to lose some of the emotions that Max's journey taught us to feel so deeply - love for one another and appreciation for every moment. Through our ministry with Max's Meals, we remain in touch with these emotions and reminded of these important lessons. We are eternally grateful for Max's return to health and for the opportunity to touch others and ease a tiny bit of their burdens through our mission with Max's Meals.

As always, thank you to all of you that continue to follow our story through this blog! Hope to see many of you on May 7th to celebrate, laugh, hug and have fun, all while nourishing families going through tough times by supporting Max's Meals & More!!

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +695: February Fun

2011-02-25T13:49:00.006-05:00

It's day +695 for Max...can you believe we are fast approaching day +700!!! WOW!! Another big milestone and life is great! I can't imagine it could be much better than it is now for our family. I haven't updated in quite some time...almost a month, I think! But, I've decided to keep writing and sharing our lives, more so for us in the future than anything and for those of you that would like to continue on this journey with us, you are welcome! We love sharing our new perspectives on life with anyone that is willing to listen.

February has been filled with lots and lots of fun things. Max and Alex are both playing basketball and really enjoying it. For Max, basketball has been somewhat of a metaphor for his unexpected journey the past two + years. When he was diagnosed in January of 2009, his passion was all around skateboarding and biking. He loved riding his scooter and idolized Tony Hawk. Shortly after he became sick, however, that passion shifted to basketball. He filled out a March Madness bracket and watched many of the games from a hospital room, either on the outpatient or inpatient side that year. We had a little Nerf hoop and bouncy balls in his hospital room during our long 6 week consecutive stay and he would take on anyone that came to visit - including our Pastor (whom he schooled...by the way ;)) and any therapist or chaplain that came our way!

It was also during his long stay that his passion for the NBA was born. We tried to bring a little gift for Max each time that Matt or I came back to the hospital after taking turns going home and Matt began bringing Max packs of basketball cards. They would sit together and read about the players, analyzing their playing history (college, NBA teams, etc) and their stats. Matt would fill Max in on historical players and their career highlights, etc. Max also started watching NBA games on tv and learning the players that way too.

Once we were home and stuck here in isolation for almost a year, we setup a little basketball court in our basement. You early followers may remember some of the slam dunking videos that I posted on the blog of Max and Alex in our basement. We have a "full court" comprised of two Little Tikes hoops (thanks Aunt Laurie) and painters tape court lines in the basement. It was at least a daily occurence during this time that the boys would have me judge them in a slam dunk competition. Whenever we had adult visitors over, they would line us up on the couch with paper and markers and have us all judge their slam dunk contests. It was always a hoot to watch! They would take on the persona of one of their favorite NBA players and be announced to the crowd with a flashlight spotlight, etc. Basketball in the basement was a HUGE way that we passed the time over those months stuck here at home.

I tell you all this only so that you will appreciate it when I brag a bit here about Max and Alex and their basketball prowess today. They are both stars of their teams! Max has scored 10 points in both of his last two games, the high scorer both games for his team. Alex's team is pre-school and kindergarten kids so, they do not keep score but, it is a common occurrence for another parent to say to Matt or I, "wow, your son is REALLY good!" He often has to be held back on the court so that the other kids can run down to the other end before he dribbles the ball down and scores again!

Watching Max on the basketball court and with his team is something else for Matt and I. We usually make it through the games with huge smiles on our faces and super loud cheers (Ellee is always telling me that I am hurting her ears at the games). But, later, in our quiet moments, our pride wells up and we both end up with tears in our eyes. It is amazing to see him out on that court with his buddies, acting like an NBA player and scoring points like crazy! I cannot express to you how wonderful it feels. It brings joy to Matt and I like nothing else could. To know what that little guy (and I do mean little...he's at least a head shorter than every other player out there) has been through and overcome...and to see him just relishing life like that is beyond words. It's miraculous! He has no fear and much confidence and he puts his all into the sport he loves...basketball. Who knows where it might take him in the future! Maybe somebody elses dog will be named Max in the future because of what he accomplishes in the NBA one day (in other words...there is a reason our dog is named Spud...after Spud Webb, the shortest player to ever play in the NBA).

Besides basketball, February has been very busy with Max's Meals & More. We have served two meals this month for the Superbowl and Valentine's Day and spent an evening with four wonderful women baking at the Ronald McDonald House. In addition, we officially kicked off our Clubs & Clowns event - a golf outing and carnival-style party to celebrate life and raise funds to nourish families at Children's Hospital on May 7th, 2010 at Lunken Playfield. We have a team of folks hard at work on planning that event and getting things ready. We are hopeful that it will be a very fun day and will raise some good funds for Max's Meals to utilize in fulfilling our mission.
To receive more information on this event and all our activities with Max's Meals, visit our website (http://www.maxsmeals.org/) and follow the subscribe link at the top of the Home page to receive regular updates. You can also find us on Facebook under Max's Meals & More.

Beyond all this, we have enjoyed lots of fun times with friends this month and I even got to go on my first women's retreat with our church. It was fabulous to be able to spend 30 hours relaxing, making new friends and thinking without interruption! I even got to take a walk outside by myself early on Sunday morning! It was very rejuvinating and much needed. I think it was perfect timing for me. I was at a point where I felt alright about being away from the family for a night and I just needed some time to think about everything and reflect on how our lives have changed over the past two years. It really confirmed for me that Matt and I are strong in our faith and that we are doing the right thing by having me focused on home, Max's Meals and helping at Children's Hospital right now. It was a great weekend.

As I said earlier, I am going to keep blogging, sharing my thoughts and perspectives on our life journey as we go along. I welcome those of you that want to continue along with us. You have so enriched our experience the past two years and your support has helped us through so many tough times. I am excited to be able to share our happiness and gratitude with you all, as we cherish every moment and continue watching Max, Alex and Ellee grow up! Life is a gift!

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +666: Loving Life!

2011-01-27T13:09:00.006-05:00

It's day +666 for Max and, although that number is a bit scary, things with Max's health are not! He continues to do well and love life! We have been quite busy with the "normal" things that 9, 6 and 3 year-olds do lately including basketball, trips to Xavier games, birthday parties and fun things like that! As you all know, both Max and Alex have quite a passion for basketball so, they are both currently playing on basketball teams and really enjoying it. Max's team had their first game last Saturday and they won! Max had a great break-away and scored right at the end of the game. It was priceless to see him after his score, running back down the court with a proud look on his face, pumping his fist like the NBA players do! Many of the parents at the game commented on how neat it was to see him like that. Our miracle continues!

Alex has been really enjoying his basketball team too, although he is well beyond his age, skill-wise. He is the star of his team and actually has to be held back so that the other kids can get back down the court before he takes it down and scores again! Oh, what months of playing hoops in your basement with your older brother will do for you!!

Max had his monthly check-up with Dr. Davies about two weeks ago and his counts continue to be good. Matt and I asked her again about the cyclosporine wean, as it has been bugging us at times and we just wanted to be sure we understood her reasons for continuing it. She was stern with me this time and told me that we have to be patient. The bottom line is that there is still a bit of a war going on in Max's body between Ellee's cells and the few cells of his own that remain. We have to wait things out until Max's remaining cells peeter out and let Ellee be in charge. If we are not patient and wean the cyclosporine too soon, Max's cells may be too strong and take over again. Then we would be back at square one...not good at all! Dr. Davies reminded me that Max's aplastic anemia was caused by his own cells and thus, we don't want them back in control or it could happen again. She also assured me that she feels his cyclosporine dosage level is safe and that he will be off of it before college! Although I think she said that somewhat jokingly, it actually relieved Matt and I. Our fear is that if he never gets off of it, he cannot be re-immunized and that would be limiting to his life. As I type that, I realize how great it is to be thinking that way...limiting to his life!!!! Because, the way things are going now, his life has no limits!! Miraculous!

On another miraculous note, Max's Meals & More has also been keeping us very busy! We served a New Years meal on January 16th to the inpatient families of the Cancer and Blood Diseases Institute. They enjoyed a traditional Cincinnati/German New Years meal of pork and sauerkraut! I was sick so, for the first time, I was unable to attend the meal, unfortunately. But, Matt took over for me and it went off without a hitch again. We now have a full year of meals planned (13) for A5 with a special meal planned for every major holiday and a few other "just because" dates as well. In February we will be serving a meal of fun appetizers for the Superbowl, courtesy of Friday's in the Anderson Towne Center. We were thrilled to get them to donate the entire thing so, support Friday's in Anderson whenever you can and thank them for us! We will also be doing a Valentine's Day lunch in February and have been blessed by the fourth grade girls at a local elementary school, Guardian Angels, as they will be preparing our Valentine's goody bags for us! Just this past weekend, our church youth group held "A Night in Italy" benefit dinner for Max's Meals & More. It was incredibly well attended with over 200 people there! They also raised an amazing amount of money which will cover nearly half our year's meals expenses! It was a very special night for Matt, Max, Alex, Ellee and I as we really felt the love and support for Max's Meals from our church community and friends. Thanks to all that attended and made the evening possible!

With things being so busy with Max's Meals & More, we are looking for volunteers for a number of different items. If you visit our website (http://www.maxsmeals.org/) you will see a Volunteers page link at the top of the home page. If you are interested in helping us out, we would LOVE to have you! Just go to that link and let us know what you'd like to do. We are currently pulling a team together to plan a golf outing/family party in May and are looking for volunteers to bake with us at the Ronald McDonald House (RMH). We have two upcoming baking events scheduled at RMH from 7 - 9 pm on February 16th and March 17th so, if you are interested in joining us for one or both of these, just let us know! All of the supplies and recipes will be provided...you just show up and help us bake everything! It's a great way to help the many families from all over the world staying at RMH for treatment of their family member at Children's Hospital and it's tons of fun!

Two years ago on January 12th, our journey with Max and aplastic anemia began. It is astonishing to me to think of all that has transpired over the past 24 months. I could not be prouder of my son, Max. He is a trooper. Throughout everything, he remained so positive and so happy. He is quite a kid. I want to share a little story with you about Max, just so you can see what I mean. The transition back to third grade this year was pretty tough for Max in the beginning, academically. Of course, we expected it to be difficult but, it was hard for us to see him struggle and to hear that he had fallen behind and needed extra help to catch back up. We know he is a smart kid and very capable but, we also knew that he had to realize that for himself and start putting the effort in himself. So, we encouraged him greatly along the way and helped him as much as we could but, I am proud to say that he figured things out all on his own. He is now getting 100% regularly on spelling, math and economics tests. Above all, his teacher recently saw my sister at school and told her (she wrote it down for me so she got it exact), "He's such a great kid. I wish I could clone him. I've never had somebody work as hard as he does." Wow!! No parents could be prouder!

Also at school, Max has begun really sharing things about his experience with his classmates and teacher. Just this week, he took a poster board "Countdown Calendar" that we had created to chart his six week stay in the hospital in with him to share with his class. Last week, he took in a brochure about Max's Meals and told his class about the "Night in Italy" that our church was having. I am thrilled to see him doing these things and think it's a really important part of the healing process for him. He is beginning to realize what a hero he is to so many people. He is starting to see the good that his story has inspired and the wonderful things that are happening as a result of it. Our miracle continues...

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +642: Happy New Year!

2011-01-03T14:24:00.005-05:00

It's day +642 for our Max and things are so quiet and boring around here this afternoon!!! UGH!! We had an absolutely FABULOUS holiday break! It could not have been better. We just really enjoyed our time together and got a great chance to relax and have some fun. I am missing the heck out of my boys today as they are back at school! I had butterflies in my stomach again yesterday with the thought of them having to head back to school today and felt a little apprehension again, like I had at the start of the school year. Crazy, I know but, it has made me realize what amazing and precious bonds that I have developed with my kids through this journey. We are truly connected in powerful ways that we weren't before and I really, really miss them when they are not with me. I know this is part of life and I must let them leave the nest and fly with their own wings...it's just harder than ever still for me to do it!

Our holiday break was just filled with fun and special moments for all of us. It was really the first time in a LONG time that we could do whatever we felt like, day after day, here at home! We went sled riding all together (Ellee LOVED it), went to see Yogi Bear at the movies, celebrated Max's birthday at Recreations Outlet with lots of family and friends, went to Xavier basketball, Cyclones hockey and Globetrotters games, went to church, shopped together and enjoyed tons of wonderful time with our families. It truly was the greatest gift just to have this time to have fun together and relax, away from the normal structure and routine of our lives again. One day, Max and I even commented in a happy way on how much it felt like the "old days" when we were stuck here at home together. Once again, the memories of those days feel happy and are something we look back on with longing already. Despite the challenges of those days, they brought us closer together than we had ever been before and set a foundation of extreme strength, love and joy for us as a family. For that, we are eternally grateful. It was very, very nice to relive them a bit over this break.

As we head into the New Year, we are filled with gratitude and feel incredibly blessed. Having Max's return to health is such an immeasurable blessing for all of us. The experiences and lessons that we have learned along his journey are something that we continue to keep in our hearts and minds to guide us as we move forward. We look forward to the days in 2011 when we can relax together as a family and enjoy good times. At the same time, we are hard at work on really getting Max's Meals & More fully running so that we can give back to those that are currently facing the overwhelming struggles that we know all too well. Our Christmas Eve brunch was well received, along with the goody bags and gifts that we presented to CCHMC. It brings us boundless joy to know that we are able to help the families of the Cancer and Blood Diseases Institute in these ways and that we have been able to turn a really tough time in our lives into something positive for others. We hope to build on Max's Meals & More in the coming year and into the future to continue providing this service.

The most important thing that we have learned throughout Max's journey over the past two years is that you never know what tomorrow may bring. Living in the moment has become our motto and we strive to focus on this and not dwell on worries for the future. Max, Alex and Ellee are happy and enjoying every bit of life...Matt and I could ask for nothing more. Recently, a BMT friend that we have gotten to know through Max's Meals had a profound ending to her Care Page update that I thought I would share with all of you: "Today I remind you to take the time to hold your kids and smile. Tell them how happy you are to be their mommy and/or daddy. When you next talk to God, tell Him thanks, too…for so much that we all just have around us every day and don’t even look at twice!" Thanks, Kimber.

Happy New Year to all of you! Thank you for your continued support and love. We hope you will continue on into 2011 with us, as we look forward to sharing lots and lots of fun times with all of you!

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +630: Merry Christmas

2010-12-22T21:47:00.007-05:00

Today was day +630 for our Max and life is good! I have been wanting to blog for sometime now and just haven't been able to find the time. Things have continued to be quite busy around here, especially lately, as I'm sure everyone can relate! It's nice to be back in the "real world" again but, sometimes I really do miss the simplicity of our days stuck in isolation at home, believe it or not! I knew I would one day get to the point where I would look back on those quiet days here at home longingly...and it seems to have arrived already!

Max continues to do very well. He had his monthly checkup two fridays ago and his counts remain steady and look good. Dr. Davies thoroughly checked out his skin, respiratory system and gut and gave him the thumbs up, once again. We discussed the wean of the cyclosporine briefly and, without giving me much reason, she told me that she did not think she would be comfortable starting the wean until the spring time. I didn't ask her for much explanation - I just know to trust her on this one. We obviously know that she knows what she is doing and know that there is good reason to wait. So, we patiently wait. We are anxious to be done with the cyclosporine just so that Max's immune system can gain full strength with Ellee's marrow at the helm and so that he can begin his re-immunization. It is nerve racking to think that he is attending school and really doing just about anything he wants to, all without any immunization protection at the moment. We are relying on the antibodies he had previously received from IVIG and herd immunity and that can be a bit scary - especially when you hear quite often lately that herd immunity may be breached because of people not immunizing their children. I'm not making any political statements here...I'm just sharing our new perspective in light of Max's journey.

Despite the continuation of the cyclosporine, Max is thriving! He is just absolutely loving life being a "normal" 8 (almost 9) year old again. The boys and Matt really enjoyed their time at Reds Fest a few weeks ago. They got to meet several of the players and get some autographs, etc. Their mohawks were a huge hit too!

We have all been busy enjoying the fun of the holiday season together lately. About two weeks ago, we took our traditional annual trip downtown to see the trains, ice skate on Fountain Square and visit with Santa with the Meyer family. We were unable to do this last year because Max couldn't be out in public like that so, it was really nice to be able to return to this tradition. We had some cruddy rainy weather but, it didn't stop us from enjoying everything. Max LOVED ice skating again. He worked so hard at it. His little bird legs were bending out at the ankles because his skates were a bit big and he must have fallen down 50 times but, he made it around that rink at least 20 times! He is looking forward to going again soon before the holidays are over. The kids all enjoyed their visit with Santa too. Spud even got to see Santa one day recently...I thought you dog lovers out there would enjoy that picture! We had another special visit with Santa this week too, at my parents house with all the Cincy Sherwin grandkids. Mama and Poppy had special connections!

The kids had their first snow day of the year last week and we had a blast! I can honestly say that I even missed snow days last year! Since we were home everyday anyway, there was nothing special about a snow day last year. But, this year, we reveled in it! We played out in the snow for a long time and then came in and had hot cocoa and cookies, just like you're supposed to! We played games together and hung out in our jammies for most of the day. It was a nice reminder of the slower days of post-BMT isolation that we used to know so well!

We have also been busy with the hospital for multiple reasons lately. Max started seeing a psychologist to get some help with the few emotional/behavioral outbursts that we have had over the past six months. He really struggles when something unexpected comes up during a hospital visit and turns into a kid that I do not recognize. He gets extremely upset both physically and emotionally and lashes out at everyone in the room. Thus, we are working with a great doctor that specializes in helping kids with another chronic medical condition to learn coping skills, etc. It is quite an intense program which requires lots of extra visits to the hospital but, I know it is going to really help Max and be just what he needs.

Alex also kept us a bit extra busy with the hospital over the past few weeks, surprisingly! We received a letter and phone call from the nurse at school about two months ago, telling us that Alex had failed his hearing test at school and that she would be refferring us to an ENT for further testing. So, we made an appointment with the ENT that we have gotten to know well at Children's through Max's journey and took Alex to see him. Sure enough, he failed the hearing test again at the hospital and they pinpointed that he had hearing loss at one frequency in his left ear. It is the kind of loss that they see with WWII vets and rock band members so, it was quite a mystery as to why he would have this loss. Thus, they had Alex undergo a CT Scan to check out the formation of his ear to see if it gave any clues to the cause. Thankfully, we just found out yesterday that his ear is normally formed. So, for now, we will continue to monitor things with the ENT and see what comes of it. Of course, our hope is that this is just a fluke that he has this hearing loss and that it will never worsen.

Along with all that, I have continued to be busy volunteering on different parent advisory committees and groups for the hospital. I really enjoying giving my time to the hospital in this way as I have seen their commitment to continued improvement and believe that it is a great way for us to help others through our experience with Max.

Max's Meals & More has been keeping us busy too! We have had a tremendous amount of positive and exciting news with the organization lately. We submitted our application to the IRS last week for official non-profit status and hope we will get some word early in 2011 regarding our request. We have a fabulous Christmas Eve brunch planned for this week and have received some great donations that have allowed us to provide some special things to the Cancer and Blood Diseases Institute and the inpatient families. We will be delivering a flat screen tv, XBox and games, and a cart to roll it all around on to the Institute on Christmas Eve. In addition, we have wonderful goody bags, toys/games and even Starbucks gift cards for each family to take with them as they leave the brunch! A group of volunteers was here tonight helping us get it all ready and it was just awesome to see it! Thank you to all of you that have supported Max's Meal & More thus far. You are helping us to provide some really special treats for the families undergoing such tough times. Be sure to check out our website or Facebook page for pictures of the brunch, gift bags, etc (http://www.maxsmeals.org/).

People often ask me lately how the kids are doing with their re-assimilation to school and transition back to reality. I tell them that it could not have gone better for all of the kids. They have amazed me with how well they have re-adjusted to school and "normalcy". Sometimes I feel like the return to life as we knew it has been much more difficult on me than on them! They have done so well that I have to ask myself sometimes if the last 23 months really happened! It is a blessing. It has been a HUGE adjustment for me to have the boys gone five days a week, especially with Max being gone most of the day, and I miss them when they are not here. But, it is exactly what we hoped and prayed for and it is AWESOME to see them enjoying their lives so much!

The next few days are filled with happiness, peace and joy around the Meyer homestead! We have formed some wonderful traditions and we are all greatly looking forward to enjoying them with each other and our families. Not only are Christmas Eve and Christmas day fabulous but, we have another very special day on December 26th...Max's 9th birthday! Each day is a gift...this time of year just makes it even easier for us to remember that. We feel so blessed and so lucky to have time to spend with each other this holiday season. There is no doubt that is our greatest gift.

Wishing you and yours all the peace and joy of the holiday season! More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +612: Getting His Due

2010-12-04T13:48:00.003-05:00

Today is day +612 for Max and I just couldn't wait to share the events of this weekend with all of you! Max is getting some very special treatment and it's so exciting that I wanted you all to know and have something to smile about.

Last night, very last minute, we were invited to attend the Miami University hockey game versus Notre Dame. Children's Hospital is working with Miami on a promotion called Swoop's Scoop. Another family was supposed to attend the event but, got sick so, our Champion's Manager at the Hospital called to see if we were available. It was an amazingly cool evening for all of us, to say the least - especially for Max. The Swoop's Scoop program put all of us on the big screen and talked briefly about Max's story, making him the special guest of the game! The look on Max's face was priceless. I could see how proud he was of himself and how honored he felt. Matt's sister Sarah's husband, Ryan was at the game and was able to get a video of it. You can check it out at the following link: http://www.youtube.com/watch?v=tqWQJUEltqY&hd=1 After being on the big screen, Max was approached by many people and given high-fives or pats on the back. Many people told him they were so glad that he was feeling better and able to be at the game! It really made him feel special. And we all loved the game, even though the Redhawks lost.

Right now as I type, the boys and Matt are special guests at the Cincinnati Reds-fest this afternoon! They are going to have some private time with some of the players and get autographs, etc. They both had their mohawks spiked way up in hopes of meeting Johnny Gomes (famous for his hairdo) and were extremely excited! I'll let you know more about this event soon.

My heart is just so full of joy seeing the kids be able to take part in these special events and enjoy them again. Max is finally getting his due. He is a little hero and deserves to know that! For so long, he patiently and happily underwent procedure after procedure, hospital stay after hospital stay, medicine after medicine, traumatic experience after traumatic experience and all without being able to see his friends or leave his hospital room or house! We are beyond grateful for his health right now and for the opportunity for him to enjoy life to its fullest like this!!!

Thank you to all of you that continue to support Max and the rest of us and to Cincinnati Children's Hospital for giving us these amazing memories....

More soon...

Peace and love,
Kristi (and Matt, Our Hero Max, Alex, Ellee and Spud)

Day +608: Ever So Thankful

2010-11-30T06:04:00.010-05:00

It's day +608 for our Max Man and he continues to thrive! He is LOVING LIFE...keeping himself very, very busy between school and playing with his friends. He hardly stops! Needless to say, it is wonderful to see.

As a follow-up to my last post, Dr. Davies decided that it was not time yet to begin weening Max's cyclosporine, unfortunately. We have not had the chance to talk to her personally yet to understand her reasoning but, as always throughout this journey, we trust she has made the right decision. We would love to begin the ween but, with the risks involved, we know that she needs to feel 100% confident and start it when the time is right so that it will be successful. Max is so in the habit of taking that medicine twice a day that he can do it just about anywhere! We have taken it with us to countless sporting events (Xavier games, Reds games, etc), friends houses, stores, restaurants, etc. We have to give it to him in glass so, some people give us some funny looks when we hand him a shot glass full of fluid but, it's the smallest glass we have! Anyway, we will continue practicing our patience with regard to this ween and have confidence that it will be successful when the time is right.

We have been busy, once again, since my last post. We had a very special occassion the Sunday before Thanksgiving as Max had his First Communion. It was a monumental day for him as well as all of us. The entire family came out to celebrate with him and he felt incredibly special. The look on his face as our Pastor handed him the bread and wine was priceless (see the picture). Without a doubt, he understands the sacredness of the ceremony and takes it quite seriously. As we got ready to go to church again this past Sunday, he asked me if he got to have communion again. He was so excited when I told him that he gets to have it everytime he goes now! It is truly heartwarming to see him embracing a tradition of the church like this. Every milestone for Max is extra special now and his First Communion was just that. I have tears in my eyes and a lump in my throat everytime I see him take the bread and wine.

Thanksgiving around here was a ball! The boys were off school for six days and we all really enjoyed the vacation from our routine. We had a great time at a local indoor playground, Recreations Outlet and enjoyed lots of time hanging out with our wonderful families. My brother and his family were in from West Virginia so, the entire Sherwin clan was here for the holiday. It was super special to be able to all be together with everyone healthy and doing well. We have two new babies this year on my side of the family so, we all had a great time playing with them and having little ones around again. I caught Max "babysitting" them a couple of different times. It was so fun to see him acting so grown-up and enjoying playing with the babies. Ellee really loved it too. She has been asking for a brother or sister now...but, that's not going to happen!

The annual Meyer Family Turkey Bowl on Thanksgiving Day was a HUGE hit around here too! Despite the pouring rain and their soaked bodies, Max, Alex and Matt came home with huge smiles on their faces. Ellee and I attended for a brief time too so that we could cheerlead the players on! Max and Alex anticipate this event all year and it has become their favorite tradition of Thanksgiving. The discussion post-Bowl this year was how long it will be until the game becomes Dads vs. Kids and who will win when it does! Should be an exciting future for the Turkey Bowl!

Things with Max's Meals & More are going well too. We are planning for our Holiday Tea this Sunday, December 5th where we are going to serve sandwiches, fruit, cookies, coffee and tea. We hope it will be a treat for the inpatient families on A5 and in the ICU. I have been working on developing some relationships with caterers, restaurants and bakeries in town and was able to get Busken to donate a bunch of cookies for Sunday's tea! I was really excited to see that people understand what we are trying to do and are supporting it in ways like this. We hope to have lots more of these kinds of donations in the future.

In the middle of all of our joy and celebration, we have had continued sadness in our BMT world. Our dear friends, the Merks from Cincinnati that we met while inpatient at CCHMC, have had an extremely difficult couple of days. Their sweet 6 year old son, Tony has been battling recurrent brain cancer for the past few months and became very sleepy and unresponsive on Sunday. He was rushed to the hospital and is now in the ICU at Children's on a ventilator. Just before this all happened, he was having a great time at his birthday party at Chuck E Cheese. It has been a shocking development for everyone, to say the least. We are praying, hoping and believing in a miracle for Tony and his family, as we have been for months now and would just ask that you all join us in keeping the entire Merk family in your thoughts and prayers. You can learn more about Tony's journey and situation at his Care Page at www.carepages.com/carepages/TonyBoy. The relationships we have made through Max's journey with families like the Merks are precious to us and it is extremely difficult for Matt and I when they are sufferring. We feel their pain and want nothing more than for their children to experience the miracle of healing like Max.

The events of the past few weeks have definitely reminded us how blessed we are. We have so very much to be thankful for. We realize more and more everyday what a gift it is to have health and happiness. We treasure every moment that we have together and are greatly looking forward to spending extra time having fun as a family over the Christmas holidays. Our little family traditions and special events mean the world to all of us now.

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +590: Gellin'

2010-11-12T06:18:00.005-05:00

It's day +590 for Max and life continues to be incredibly good! Max had his monthly checkup and labs last Friday at the hospital and came home with a big smile on his face! His labs all look great and Dr. Davies answered two of his questions just the way that he wanted her to - he is now allowed to swim in public pools AND he can play football next fall (uh, oh)!! These are two huge milestones for Max, once again! In addition to this good news, we discussed the possibility of beginning the wean of his cyclosporine (immune suppression) medication. His engraftment has been pretty stable the past six months or so at right about 90% so, Dr. Davies had the nurse draw some extra labs to look at one more part of his immune function before deciding for sure about the wean. Those results should be back soon so, we should hear more within the next few days about this big step. Needless to say, we are excited about this possibility and, at the same time, nervous. We are going to need to take this slowly and watch things closely to be sure that Ellee wins the marrow war. I reassured Dr. Davies many times last Friday that we were not in any rush and wanted her to be sure, which of course she will be before she even begins. To be honest, I could tell that she is nervous as well as she kept saying, "maybe we'll wean just a tick." We are going to have to try this at some point in Max's best interest, we all know. It's just going to be a bit of unknown territory and therefore, nerve wracking for a while.

There was additional good news from Friday too. Max has been receiving an inhaled medication, Pentamidine, each month to protect his lungs from a specific pneumonia that can affect immune suppressed individuals. Beginning in two weeks, we are going to switch over from that inhaled medication to an oral med that he will take twice a day for three days each week. Thus, his monthly visits will be even shorter than they have been down at the hospital!

As we drove down to the appointment last Friday, I was actually kind of excited to see everybody at the Clinic as we had not been there in five whole weeks!! I started to realize as I drove that we are quickly becoming strangers to the place, in a wonderful kind of way! It's a bit of a weird place to be because the nurses, care managers, nurse practitioners, doctors and child life folks have really become like a second family to us. It's kind of hard not seeing them for such long stretches of time and yet, it's exactly what we want!! We joke a lot with them when we are down there as we leave and say, "hope we don't see you for a long time!"

Max is treated like a celebrity when we are there. As we wait at the check-in desk, one person after another passes by and says "hello" to him and remarks about how great he looks. Once we are in our clinic room, he typically gets lots of extra visitors that stop in to see him. I have come to realize that the team down there needs to see him...they need to see the successes! That's why they are there. We are always thrilled to see our buddies from down there. Every one of them has been important to us along this journey.

I seem to be spending more time down at the hospital now focused on Max's Meals & More and giving back then anything else! Exactly as we had hoped! We had a fabulous Halloween luncheon with some really special moments. You can read all about it on our site at http://www.maxsmeals.org/. Thanks to everybody that donated items for the treat bags. They were a huge hit! We are busy planning now for the Holiday Tea on December 5th and for Christmas Eve brunch. I'm going to be putting some kind of bags together for the families for Christmas Eve again so, if you are interested in contributing to those or helping to put them together, watch the Max's Meals site!

The Vendor Fair to benefit Max's Meals & More that my neighbor, Katie McHugh held last weekend was also a success and a lot of fun! They have raised more than enough money to fund a meal for the floor already and more is to come! I enjoyed purchasing items from most of the vendors too! Thanks to all of the vendors that were there and to those that sent things to support the Fair. My aunt in Cleveland even donated some of her famous tie-dyed socks from her non-profit, No Rulz Art that sold very well too! You can read more about No Rulz on Facebook. It's an awesome venture. Thanks, Annie for your support!

So much has been going on since I last blogged that I almost forgot to write about Halloween here at home! The kids had a ball! Max was an army guy, Alex was a crazy skateboarder dude and Ellee was a princess (shocker). The boys went all out this year for the first time ever. They were done with our neighborhood of about 45 homes in 30 minutes! So, we drove down the road and let them hit another neighborhood for another hour with their buddies. They were exhausted and cold by the time we got home but, proud of their loot and ready to dig in! I think we'll be eating candy for a couple of years, at least! No need to trick or treat for the next couple Halloweens! :) It was wonderful to see them enjoying the fun day so much. If you'll remember, last year Max was not allowed to trick or treat at all. He definitely made up for lost time this year!

The day after Halloween, I took Alex and Ellee to the doctor for their annual checkups, only to find out that they both had strep again! Ellee had some minor symptoms but, Alex had none so, needless to say, I was surprised. I had Max tested after school that day and he was negative initially but then, on Tuesday, he came down with super gooey, red eyes and after a visit to the pediatrician on Wednesday, was diagnosed with a sinus infection and a mild case of strep again as his culture had grown a bit since the test Monday! So, they are all just finishing another round of antibiotics and feel great at the moment. I have come to realize that this is going to be life for us for sometime to come. One little germ battle after another...one immune system building block after another for Max and really Ellee too!

Just this week, Max and Alex got some new hairdos. They have been asking me for mohawks for a while now and I initially fought them about it and won. But, after the arguments, I realized that I didn't feel great about telling them no. I didn't know why I cared so much...I mean, after all, it is their hair, not mine! So, this haircut, I surprised them and told them that they could decide how they wanted their haircut. They both were thrilled and hopped right into the barber's chair to describe the mohawks that they wanted! Thus, we now have two little boys with crazy punk hairdos!! They are really growing on me, however. LOTS of people comment on them when we are out in public and they do look pretty cute, I must admit. They fit the boy's personalities...always ready for anything!

The other recent development that I've had is with my job at GE. They contacted me about two months ago to see if I would be ready to come back to my former position as they felt they really needed to get someone in it. I have been surprised that they have not filled it before now, honestly but, figured that my leave was good timing with the economy, etc. I was somewhat surprised by their call so, I just answered them honestly, telling them where things stand with Max and his health, etc. and that I just cannot be 40 minutes from home yet at this point. I really need to be able to get to him at school within 10 or 15 minutes, for everyone's sake. In addition, I explained that if he were to catch the wrong germ, he may need to be down at the hospital for some time still, even overnight, to get help and therefore, I could not be real reliable still. So, with that honesty, I essentially gave my two weeks. They decided to hire someone else for the role and end my leave of absence. All very understandable after almost two years time! It was a tough day for me. I must admit that I was very, very sad when I learned that I would have an official exit date from the company. I was with GE for 13 years and it was a great place to work. I really enjoyed my jobs there and miss working. But, this is the right thing for our family right now, no doubt. Now that I have had some time to think things through, I actually feel somewhat liberated. I have had a tie to them now for almost 15 years and it's kind of exciting to see what happens now that I don't. Hopefully I will end up back there one day...we shall see what lies ahead.

Last week as we all went up for communion at church on All Saints Day, a woman that we have not seen in a while was behind me and whispered in my ear, "how does it feel to be a part of a miracle?" I responded, "awesome". It is awesome. There really are not words to express it. Sometimes I almost can't believe what has happened in the past 22 months. Everytime I look at Max, I smile. I am so proud of him and really, in awe of him. He is a champ, a survivor, an inspiration. This journey has taught us how to live, how to love, how to be really, really happy and fulfilled. I am beyond grateful for the blessings that we have and for every moment that I have to spend with my family.

More to come soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +573: Good Stuff!

2010-10-26T15:37:00.006-04:00

It’s day +573 for our Max-Man and he continues to do fabulously. He has been battling a cold for the past two weeks or so and we have been on high alert to be sure he is getting through it alright but, so far, so good. He had a nasty cough and a lot of congestion but, he seems to be beating it all on his own!! Yippee!! The interesting thing lately has been that Max and Ellee tend to get sick and Alex does not, or at least not to the extent that Max and Ellee and affected. He has had a tiny bit of a drippy nose and that’s about it. Poor Max and Ellee have both had a rotten cough and tons of snot. Just shows you what an immune system does for you as you grow and it grows along with you. Alex’s immune system garden is in full bloom and knows what to do when a little cold germ comes around. Ellee’s little immune system garden is pumping away in both her body and Max’s and learning how to deal with little cold germs and the like everyday! The miracle continues!

The toughest part for Max about this recent cold has been that he has experienced some skin break-down on his upper lip again. This has happened three or four times now and it is very embarrassing for him. He hates it and asks me constantly when it happens how we can get rid of it. I have talked with the hospital at length about it and they think it may be a bit of graft vs. host disease (GVHD) of the skin that flairs when he is fighting off something. They assure me that we are treating it right and that as long as it is clearing up with our current treatment crèmes, it is alright. For Max, however, the scabs on his lip have been tough to handle at school. I don’t think the kids are saying anything mean. I just think they are asking him why it is happening and he is sensitive about it at this point. I think he doesn’t want to be different in any way anymore from his peers and having to deal with skin issues like that make him different and it’s just tough for him. It’s all part of the adjustment and really, good life lessons in dealing with little things like skin imperfections but, it isn’t easy for Max. Matt and I’s hearts break when he gets upset about it and cries, wanting the skin issues to go away. But, we are ever so grateful that these are the issues that we are facing now. They are so minor in comparison to where we once were with our little boy.

We have had lots and lots and lots of good and fun things going on around here. We have been busy, busy, busy celebrating birthdays as Alex turned 6 on October 13th and Ellee turned 3 this past Sunday, October 24th! Alex had a special little party before afternoon kindergarten on the day of his birthday with three good buddies and Ellee had a fancy princess tea party this past Sunday with four of her little girlfriends. We have also celebrated both Alex and Ellee with our families, of course. So, we have busy birthday’ing!

The walk for Children’s on October 16th was awesome. They had over 8,000 walkers down at Coney Island for the event! It was very inspiring and moving to see so many people motivated to come out and walk for such a great hospital. Max loved every minute of it! He enjoyed walking with all of his buddies that were there and loved riding the rides afterwards and eating the pizza and lunchables for lunch! The weather was perfect and it was just a fantastic day. Our team ended up being right about half of what it was last year with 53 walkers and about $5,000 raised! We were thrilled with that outcome and felt it was a wonderful contribution to CCHMC. Thanks to all of you that walked with us or donated to Max’s Mighty Mob. We plan to do the walk every year so, hopefully you all can join us at one point or another for it. It really is a great day.

In the midst of all of this fun, Max’s Meals…and More has just been exploding! We have had tons of great things going on and really can feel the momentum building behind the organization. We have launched a great new website for the organization at www.maxsmeals.org. Check it out when you get the chance. My brother-in-law, Ben Symon has done a tremendous job pulling it together for us. As you will see when you get there, we have a blog built right into the site as well as an events calendar. I will be updating both of these regularly as well as adding a volunteers page soon to detail opportunities we will have to help in the future so, check in whenever you can if you want to know what is going on with Max’s Meals…and More.

In addition to the website, we have an exciting new partnership to announce. Some of our good friends, Jason and Dena Hipskind, have a non-profit organization called Comfort Food that they started about 4 years ago in Indianapolis, IN after their youngest son, Auggie was treated for a very rare form of cancer. About a year and a half ago, the Hipskinds moved back here to Cincinnati and recently, Dena decided to launch Comfort Food here in Cincy too. Comfort Food's mission is very similar to ours but, the way in which they are fulfilling their mission is quite different. They work with Dream Dinners to hold "prep events" once a month in which volunteers prepare meals which are then flash frozen and distributed to families facing medical crisis through support organizations. In the past she has worked with organizations in Indiana such as The Wellness Community, The Ronald McDonald House and The American Cancer Society's Hope Lodge. Dena recently contacted me to see if Max's Meals...and More would be interested in becoming one of the support organizations that Comfort Food distributed meals through. I saw multiple advantages for us in this relationship - we would get these meals free of charge and would be able to actually take part in the preparation of the meals by volunteering at the Comfort Food prep events. So, I spent time working with the Infection Control department at Children's Hospital to be sure that Dream Dinners food would be acceptable to be served and ultimately got the approval that we needed to make this happen. We will be launching our new partnership with a meal down on A5 soon. If you'd like to learn more about Comfort Food, you can visit their website at http://www.comfortingfamilies.org/.
We are also in discussions with the catering arm of the Freestore, Foodbank (called Cooks Catering) to see if we can work with them to provide some of our meals going forward as well. Cooks Catering is an awesome arm of the Freestore, Foodbank and I think this relationship would be an absolute win-win for everyone involved. If you'd like to learn more about Cooks Catering, visit their site at http://www.cincinnaticookscatering.org/

I had an hour and a half long meeting yesterday with the Business Director for the Cancer and Blood Diseases Institute at CCHMC, the leader of the Social Workers and Child Life folks on A5 and two CCHMC folks from the Department of Development for the hospital. I had asked to meet with these folks so that I could go over the plans that we have been putting in place for Max's Meals...and More and be sure that we had the support of CCHMC moving forward. The meeting was very successful and I am confident that we have CCHMC and the Cancer and Blood Diseases Institute 100% behind us. They loved our mission and all of our goals and were extremely excited about our plans. Overall, it was a very worthwhile, important meeting and I am extremely pleased with the outcome.

The golf outing that Matt's dad, sister, Sarah and friends put together last Saturday was a blast and very successful. I think the outing raised about $1000 for Max's Meals...and More which is fantastic for the first try! I was another beautiful fall day here in Cincy and Max, Alex and Ellee had an absolute ball! The boys got to drive their own golf carts around and loved that, of course. Ellee enjoyed the playground down at Lunken and we all enjoyed the cookout afterwards. We are seriously thinking about doing something like this every year and making it very family oriented. I know the kids are going to be asking when the next Max’s Meals…and More golf outing is!!

We will be serving lunch on A5 this Sunday for Halloween too! The treat bag idea has gone over well also and we have received lots of donations for them. I'm sure they will be a hit with the families. We are assembling them tomorrow night. I’ll be sure to get some pictures of the bags and the lunch onto the Max’s Meals…and More site soon!

Life is good…so good! Incredibly busy and tiring but, so much fun and so exciting! I often still stop myself and marvel at the miracle that is continuing right in front of our eyes. Our little Max is really getting back to being himself and just relishing in every bit of life, thanks to his precious little sister, Ellee. Alex is loving being back to school and hanging with his buddies like 6 year olds should as well. All of us are healing, all of us are moving on and the future for ALL of us is looking brighter and brighter all the time!

Thank you to all of you that continue along on this journey with us. We love it when people tell us that they are still reading the blog and keeping up with the happenings in our lives. One of the greatest gifts to so many of us from this experience is the gift of presence – living in the moment and never taking anything for granted! We hope that by continuing to share our journey with you, you will continue to live life to the fullest, being grateful for your blessings and enjoying every moment you have with those that you love and care for, just as we are!

More soon…

Peace and love,
Kristi (and Matt¸Max, Alex, Ellee and Spud)

Day +559: The Fun Continues!

2010-10-11T21:49:00.005-04:00

It's day +559 for Max and life is good! He continues to progress well, feel great and love life! At his last checkup, for those of you that know blood counts, his platelets (which are one of the greatest indicators of the strength of his engraftment with Ellee's marrow) were at 394. For a point of reference, when this journey began on January 12, 2009, Max's platelets were only 6! A normal level is anything above about 150. His other blood levels all remain good as well and he has even gone for six months now without receiving IVIG (IV immunoglobulin)!!! That means, also that since his stay for ear issues back in June, Max has not had an IV now in four months! HUGE progress! He did have to get a flu shot a week and a half ago at his monthly checkup and that was very traumatic for him, unfortunately. Besides that, he is just getting peripheral blood draws once a month and his inhaled pentamidine to protect his lungs while he remains on the cyclosporine. Amazing how far he has come already!

Max's miraculous progress leads me to the first reason that I wanted to update today...the walk for Children's Hospital this Saturday with Max's Mighty Mob! We are currently up to about $3,400 raised and about 40 walkers! While this remains far short of our lofty goals based on last year's turnout, we are proud and happy that Max's Mighty Mob is able to contribute this much to CCHMC. Max is soooooo looking forward to the walk on Saturday. He just asked me this morning before school how many people were walking with us. When I told him he responded, "with me right at the front of the pack!!" We cannot wait to see his smiling, happy, joy-filled face walking through Coney Island with the Mob behind him! I know it is going to be a very special and memorable day, once again, for all of us! Last year we could only dream of this day...dreams really do come true! There is still time to register to join us for the walk or to donate to one of our team members. Just click on this link: http://giving.cincinnatichildrens.org/NetCommunity/maxs_mighty_mob As we have said before, we know how valuable your donation is...it literally saves lives!

I also wanted to write today to invite you all to help with a fun, new little project that we have decided to try out with Max's Meals...and More (our new official name now)! We are going to be hosting a Halloween Luncheon for the inpatient families of the Cancer and Blood Diseases Institute and have decided that it would be nice to let each of the families take a treat bag back to their child's room to enjoy together. Thus, we are looking for donations of Halloween or Fall related items to stuff these treat bags with. They can be for any age from infant up through adult. Edible donations cannot be homemade but, must be store-bought and individually packaged (candy, cookies, etc are great). You can also donate toys, games or other fun items but just be sure that they do not include any latex. We typically serve 60 - 70 people at the meals but are looking to put together about 50 treat bags. I will likely do this again for our Christmas Eve Brunch if it is successful so, take that into account with regard to how much you might spend. If you would like to donate items for these treat bags, I will have a basket on my front porch beginning this afternoon that you can drop your donations into by Wednesday, October 27th. We will then gather a small group together on Thursday evening before Halloween (Oct. 28th) to put the bags together. If you are interested in helping to assemble the bags, please email or call me and let me know...we'd love to have you! I hope that this will be another small way to show the families stuck in the hospital on a fun day like Halloween that people are thinking of them and hoping to bring just a tiny bit of sunshine into their day.

Life has been very, very busy around the Meyer homestead lately! We are rejoining the "rat race" of "normalcy" with three young kids. The weeks are pretty crazy between the official launch of Max's Meals...and More, homework, housework, Matt traveling, Alex's soccer, Max's first communion classes and my volunteer work down at the hospital. But, we find lots of time for fun too! We recently visited a local pumpkin patch and took a great hayride (thus the pictures in this post...with cousins Ben and Audrey) and Ellee and I went to see the Disney Princesses on Ice last weekend with Matt's mom. We have been spending lots of time with friends and family, enjoying socializing again and reconnecting with so many people that we didn't get to see over our 18 months of isolation!

Max's Meals...and More is really gaining some momentum recently. We are hard at work on a website which should be launching within the next week or so and have our application for official non-profit status in process, hopefully to be approved within the next few months. I have been talking to several other organizations about potential partnerships and have been coordinating everything with the hospital to be sure they are "on-board" and fully behind us. Things are getting pretty exciting and we are beginning to feel that the potential to help inpatient families may be enormous. We have been strong belivers since the beginning of this venture in letting Max's Meals grow organically. We are always looking for "signs" that we are headed in the right direction and ready to shift directions if necessary. So far, things are pointing us forward and we are really feeling elated that we are able to give back and help others in this way. Lots more to come with regard to Max's Meals...and More!!! Just a reminder too - there are two upcoming fundraising events that we are greatly looking forward to: the golf outing on Oct. 23rd and the vendor fair on Nov. 6th. I have attached flyers for both to the email I sent out with this update. If anyone did not get those flyers and is interested in attending, please email me at kmmaemeyer@yahoo.com.

About three months ago, Max and I were asked to participate in a new program that Children's was trying out to tell our story, similarly to NPR's "Tell Me A Story" segment, for those of you that are familiar. We spent some time one day down at the hospital talking while they recorded our conversation. They also had a professional photographer take pictures of Max, Alex, Ellee and I. The following link is the beautiful production that they created for use on their website, etc: http://www.youtube.com/watch?v=gq-tHxGdU58 We are thrilled with how it turned out, especially that they featured the special story about Max at the end of it. Hope you all enjoy it too.

Thanks for continuing to check in on us through our blog and for your continued support, love and prayers. We continue to be eternally grateful for our blessings and enjoy every moment we have together. Hope to see lots of you at the walk this weekend!

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +544: Paying It Forward

2010-09-27T21:31:00.008-04:00

It's day +544 for Max and things continue to go well for him and for all of us! We had a bit of a test last week as all three of the kids came down with strep throat and Max's affected his skin as well. But, I'm happy to report that, thanks to antibiotics and working immune systems, they have all been feeling pretty good since about Saturday and are back on track with school, etc. again! It was a long week for Mom as I had at least two kids home all day, everyday again but, it brought back some fun memories of many weeks like that in the past 20+ months and we made it through!

Beyond that, we had a couple of very exciting events last week that I wanted to share with everyone. On Tuesday afternoon, I had tickets for the boys and I to go to Ollie's to see Tony Hawk skateboard. We had learned that he was going to be there a few weeks back so, I made sure to get some tickets. Last Monday, my mom called down to Ollie's and spoke with the manager about Max's story and he said that he was going to do what he could to be sure that Max and Alex got to meet Tony! So, we went down to Ollie's early (per his request) and were treated extra special. We got VIP wristbands from the Ollie's folks and got to have about 10 minutes of private time with Mr. Hawk!!! To say that the boys were excited is definitely an understatement. As Max said upon meeting him, "I got to have two of my wishes come true!" He signed their helmets and their skating shoes and talked with them about what they liked to do, etc. It was definitely something to remember!

I haven't updated about Max's Meals in a while but, we have continued serving meals to the inpatient families on A5 and are pursuing our official non-profit designation with the IRS currently. Our last meal was a "Just Because" meal in mid-August and we are planning a Halloween luncheon, a holiday tea (with cookies and desserts, etc) and Christmas Eve brunch now. On Thursday evening last week, we took a very special and exciting step forward with Max's Meals and had our first official Board of Trustees meeting. We have assembled a great group of people that are near and dear to our hearts to help us guide Max's Meals forward and our first meeting was fabulous. We brought everyone up to speed on our passion behind the organization and what we have been doing to date. Then we talked a lot about our mission and our initial goals. We have lots and lots of wonderful and caring ideas to pursue and are so excited about the possibilities to help the patients and families of the Cancer and Blood Diseases Institute at Cincinnati Children's Hospital. We are pulling a website together and some marketing materials and hope to have more communications out about the venture soon. We could not be more thrilled to be moving forward with this non-profit and focusing on paying it forward.

Speaking of Max's Meals...I wanted to let you all know that there are two fundraisers that people have pulled together all on their own coming up soon. We have been so touched by the generosity of these folks and their willingness to do so much to support Max's Meals. We would love for anyone that is interested to attend these events. The first event is a golf outing that some of Matt's dad, Jake's friends have pulled together for Saturday, October 23rd at Reeves Golf Course at Lunken. It is $75 to play golf and have lunch at the event but, you can also just come for the luncheon/grillout if you would like. If you are interested in attending, please email me and I'll get you a copy of the registration form.

The second event is a vendor fair that my sweet neighbor is going to have to benefit Max's Meals on Saturday, November 6th from noon - 4pm. She has seven different vendors lined up to showcase their products and will be collecting a small admission to donate to Max's Meals. She is planning to have a flyer with more details for this event soon so, I will be sure to make it available to all of you.

These two events and our meeting last week with the Board have gotten us very excited about the potential for Max's Meals. We are beyond grateful for the miracle we have witnessed with Max's healing and feel so blessed to be in a position now to be able to give back and help others to cope through such difficult times. Thank you, again to all of you that have supported Max's Meals to date...it is because of you that such positive and wonderful things are happening.

Max's Mighty Mob is continuing to grow as well. We held a spot in the list of top ten fundraising teams for a short time and would love to end up on that list but, are thrilled with the progress that has been made already. We have 32 people registered to walk now and have raised over $2,200!!! We set our goals high at 100 walkers and $11,000 purposefully in hopes of repeating last year and we aren't giving up on that yet!!! Please consider joining us on Saturday, October 16th for the walk or sponsoring one of our walkers. You can sign up to join us or make an online donation at our team's site: http://giving.cincinnatichildrens.org/NetCommunity/maxs_mighty_mob Thanks for your support of Max's Mighty Mob too!

In my last update, I told you of my struggles to "re-integrate" and I so appreciate all the love and support that I received from so many of you regarding that struggle. I am doing well overall, despite my ups and downs and find myself drawn to focusing on paying it forward. To that end, I had a bit of a rough spot last week as I had a conversation with my HR Manager at GE and finally let go of the position that I had when I left there almost two years ago! Yes, they still had my position waiting for me, even after all this time. GE is a fantastic company to work for and I would love to return to the position that I formerly had, before Max got sick. It was a dream job for me...working part-time on the eco marketing campaign for the Aviation business. But, the reality of my life is that I am still not in a position where I can commit a large portion of my time to something outside of this house. With Matt busy with his job and traveling a lot, I need to be available to run up to school at a moments notice to get Max and do whatever we might need to do each day to keep him well - and that could still mean spending a day or even a few days and nights down at the hospital. I just can't be 40 minutes from home working at GE right now, even a day or two a week. Thankfully, I am still on a leave of absence with the company and hope that in the fairly near future I will be able to return to something like I had before. In the meantime, I'll spend my time enjoying my three little ones and helping families like ours through their journeys at Children's.

Despite this little glich, LIFE IS GOOD! LOTS of GREAT stuff going on...and I didn't even mention our participation in the golf outing for Make A Wish this weekend or all the involvement I've had now down at the hospital as a parent advisor, etc! Not to mention that Max, Alex and Ellee all continue to do fabulously at school and even have been attending Sunday School the last few weeks! Max is even going to take first communion classes this fall and make his first communion at the end of October!!!! WOW!!! Dreams do come true!

As I said earlier, we are beyond grateful for the miracle of Max's healing and for his continued positive progress. We pray for and remember daily our dear friends that have been lost along this journey - Andrew, Ethan, Matthew, Natalie and Troy - and those that continue to fight for their miracles - Brayton, Preston and Tony. Along with our Max, it is these children and their families that have inspired us to launch Max's Meals and who remind us to treasure every moment.

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +530: Reassimilating

2010-09-13T13:41:00.005-04:00

It's day +530 here at the Meyer homestead and life is good! Max had his monthly check-up last Tuesday morning with Dr. Davies and her team and they were pleased with how he looked and how all his blood counts looked, etc. The best news from the visit was that his engraftment was back up again to 87.4%! It continues to bounce around in the 80's but, I think we are all feeling that it is somewhat stabilizing there. We continue to hope and pray that this is the case. Only time will tell for sure.

Max and Alex are both doing brilliantly back at school. We had one small blip so far - Tuesday of Max's second week, the school called about 10:30 am to say that he was in the Health Aide's office with a tummy ache. Of course, for their sake as much as mine, I dropped everything and headed up there to check him out. I ended up bringing him home here, as he was still complaining that it hurt...and, as suspected, nothing came of it. Thankfully. I was afraid that we might be starting something so, we had a few "heart to heart" discussions that day about being sure we were really sick before we went to the nurses office and came home and things like that. Maxer must have gotten the message because it hasn't happened again so far, thank goodness!

Ellee also started preschool last Friday! She was very excited about going until we were just about there when she announced for the first time, "mommy, I don't want to go to school." She shed a few tears as Alex and I left her but, the teacher's said that they were short lived and she was happy as could be when we picked her up. She will be there each Friday morning for 2 1/2 hours so, it gives Alex and I some "date time" which we are excited about. It's so nice to have one on one time with each child. I am looking forward to having Friday mornings to hang with Alex, my sweet little boy.

Beyond all that, we have been busy having lots of fun too! Matt went on his annual golf trip with his buddies a few weekends ago and the weekend after that, I headed down to Hilton Head with just my family for my cousin's wedding on the beach. It was beautiful and I enjoyed my time away, especially getting to hang out with my sister and brothers and mom and dad without constant interruption from one of our little ones. I was anxious to get home here and really missed my family but, it was a special weekend and I am so glad that I was able to get away for it.

We went to the Reds game this past Friday night and the kids had a ball! The boys are really excited about the Reds and their hopeful pennant race and they love the new pitcher, the Cuban Missle. They were thrilled to be able to attend another game this summer and we all enjoyed a beautiful fall night here in Cincy. We also hit Kings Island this past weekend! We hadn't been all summer so, we took advantage of some discounted tickets through GE and took the kids. We all enjoyed it for awhile although Max was quite disappointed that he is not tall enough yet to ride the big rollercoasters. He was really looking forward to riding the Beast and some of the other coasters but, unfortunately, he is just not there yet. He was very sad and frustrated and bummed out about being so short for really the first time ever. As he cried about it, I told him that I was so proud of him because his small size is never an issue for him. He never lets it phase him and that is something to be proud of. I told him that it was impressive to see him out on that basketball court, playing against kids two or three heads taller than him, not even phased by it! I tried to make him feel better by saying that I was sure next year he will be tall enough and we will ride the heck out of the coasters then. It was tough to see him so disappointed.

I am doing my best to continue our reassimilation back into reality. I could not be more pleased with how well the kids are doing. I wasn't sure what to expect and they have just blown my socks off, as usual. They are all so happy to be back with kids their ages, doing what they are supposed to be doing at 8, 5 and 2! It's absolutely a dream come true to see it happening. At the same time, to my surprise, I am struggling more than I have in a while. I think for the first time, I am feeling much of this journey. I knew that the time would come when I would crumble a little bit and I think it is now. When you are in the heat of a journey like this one, you do what you have to in order to get through it. You hold back your tears, you pull yourself together, you do your best to put on a happy face and make the best of it. It isn't until you have gotten yourself and your loved ones through it that you are able to digest it more, from a distance, and have some moments. There are times these days that I can't figure out what I am feeling or why I am feeling it. I just know that my head is full of thoughts and emotions and sometimes, I just have to let them go...let them out of there...not hold them back any longer!

I know that this is all part of this journey. The other night at our Parent Advisory Group meeting at the hospital, we actually got on the subject of caregiver/family support and a couple of the other parents were saying that the roughest time for them wasn't necessarily when they were in the hospital. It was once the treatments were all over and their children had been given a clean bill of health and were returning to reality that they really struggled. I felt so comforted to know that.

I have been thinking a lot about all this lately, trying to make some sense of it for myself (my analytical mind at work, unfortunately). I know that part of it is that I am feeling things as I remember experiences that I probably didn't fully allow myself to feel before now. I also know that another part of it is that I miss being with my three little ones each day, although I am thankful for my quiet time in the afternoons while Ellee naps. But, I think the other part of it is that my perspective on life is forever changed...somewhat for the better and somewhat for the worse. My mom put it well yesterday when she said that in some ways, our experience has made parts of life more joyful and special and in other ways, unfortunately, it has taken some of the joy out of life.

The best way that I can come up with to describe it is to imagine yourself going on an oversees assignment with your family for 18 months, say to Germany. The place is different; the people are different; the way you spend your time is different; even the language is different. When you have an oversees experience like that, you can be forever changed; your horizons can be broadened; you can see life in a different way than you did before. To a large extent, that is how our last 18 months have been. I am not the same person that I was before this journey and, while it is so good to be getting back to doing things that we did before this all began, it can be tough at times.

I share all of this with all of you because I just think it's important to give you some insight into this part of the journey. While Max is doing incredibly well and that is the most important thing in the world to us, we are continuing to feel the ramifications of this experience. I know that with time, I will "reassimilate" and work through my thoughts and emotions. In the meantime, don't be surprised if I have a sudden teary moment over something you would not ever have imagined someone crying about (I still get tears in my eyes every time Alex climbs on that afternoon Kindergarten bus to go to school)!

On a positive and happy note, we are thrilled to see our progress thus far with regard to Max's Mighty Mob and the walk to support Cincinnati Children's Hospital on October 16th! We would love to have more of you join us or support the hospital financially, if you can! Please visit our team link at http://giving.cincinnatichildrens.org/NetCommunity/maxs_mighty_mob. As I said on our team's page, we can never repay the medical team at Children's for giving Max a second chance at life...all we can do is do our best to get one heck of a team out there at the walk each year, raising money for Dr. Davies and her team to continue their life saving research in order to make the next family's bone marrow transplant journey a bit easier!

Thank you for your continued caring support of Max and our entire family!

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +516: Please Join Max's Mighty Mob!!

2010-08-30T13:12:00.003-04:00

It's day +516 for Max and he is off at school, along with little Alex who just got on the bus for Kindergarten a few minutes ago! They are both doing fabulously with school. We could not have asked for it to go smoother so far. They have both looked forward to it and come home with smiles on their faces! There has not been one moment of hesitation or sadness about it! Their whole reaction to school and their smooth transition has made me realize just how difficult this past 18 months has been. They so missed being with their buddies and being at school, especially Max. It was just really difficult to keep a 7/8 year old happy, stuck here at home with minimal interaction. It is a true miracle and a real blessing that they are both able to get on that bus and go to school, just like they are supposed to! Life is good!

I am really writing today to let you all know that we have setup a team for the Cincinnati Walks for Kids event to support Children's Hospital on October 16th, 2010. We are again called Max's Mighty Mob and are hoping to have the largest team at the walk this year!!! Our goal is to have over 100 walkers and to raise more than $11,000 for Dr. Davies and her team's life saving research. You can register to walk or sponsor someone on our team through the following link: http://giving.cincinnatichildrens.org/NetCommunity/maxs_mighty_mob Max is actually going to be able to be there this year, leading the Mob so, we would LOVE to have a HUGE turnout, just to show him what an inspiring little guy he is and to show the hospital how grateful we are for the miracles they have performed in our lives!!!

Sure hope you can join us on October 16th! If you can't be there in person, please consider sponsoring someone...we can tell you that it is beyond money well spent!!! For those of you that want to join us but don't have a Mighty Mob t-shirt from last year, please email me and I'll order one for you. Just let me know what size you need.

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +511: A GIANT Step!

2010-08-25T21:05:00.004-04:00

It's day +511 for Max and he took one GIANT step today! He went back to school as a third grader at Wilson Elementary! He did wonderfully - as well as we could have hoped so far. He woke up before 7 am this morning and was dressed and ready to go about 5 minutes later! He was very excited and maintained his excitement all the way onto the bus. To say the least, that really helped Matt and I, especially me!

I had been a bit of an emotional basket-case on Monday and Tuesday with the anticipation of Max's big day so, having him so excited to go to school today really, really helped me. I was able to get through his departure without any tears until the bus was pulling away, which was exactly what I had hoped for. I lost it for a minute or two after he left and my sweet Alex asked why I was crying. I told him that it was mostly because I was just so happy for Max. Of course, I was also crying over the fact that I would now be separated from my Max-Man for 7 1/2 hours a day, without being able to even call and check on him, but I didn't let Alex in on that part. :)

Max was definitely exhausted at the end of the day but, after a good snack and some rest time inside, he was quickly back outside on his bike, ramping away with his buddies in the neighborhood. He continues to amaze all of us. I'm sure as the consecutive days of school wear on, he will wear out more. But, I was happy to see him getting to enjoy the beautiful day here in Cincinnati too.

Another big day tomorrow...Alex starts Kindergarten! The house was already considerably quieter today with Max gone. I'm not sure how I will feel about the lack of noise tomorrow afternoon but, I know that somehow I will get used to it.

I'll leave you with one last memory. As I was tucking Max into bed on Tuesday night, with thoughts of him returning to school today running through my head, I suddenly had a flash back to all of the nights that I tucked him into his same bed here at home, watching over his IV medicines as they went into his bald, swollen, little body through his central line (the IV that was in his chest for 10 months). It made me realize how far this little guy has come in such a short amount of time. Wow! Max is living his second chance at life and we are so eternally grateful. He is a walking miracle...and he is my little third grader.

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +506: Busy, Busy, Busy!!!

2010-08-20T07:03:00.010-04:00

It's day +506 for Max and we have hit a couple more awesome milestones since I last blogged - this has been the longest I have gone since this journey started without blogging AND we went the longest we have gone throughout the entire journey without going down to the hospital!!!! I apologize for the lack of blogging but, we have just been so busy enjoying life and squeezing the last fun out of summer that I haven't had the time to sit down at the computer much lately! I know you will all be happy about that!

We were down at the hospital last Friday for Max's regularly scheduled monthly check-up and things are good. We had not been down to A5 for 5 weeks...a record since this journey began! Max's engraftment was up a bit to 85% and his blood levels were all great. His ears have really healed up nicely, finally and overall, Dr. Davies thought he looked good. It was a pretty quick in and out visit - only about 3 1/2 hours which is nothing to spend down there! We got a visit from one of our favorite therapists too, Brian the Music Man, which Max really enjoyed. He said he would not have recognized Max without me there since he looks so good these days! It was wonderful to see him and have such an upbeat visit with him.

The last time I wrote, we were about to be featured in a channel 9 news/Hoxworth blood drive story. The piece turned out great and we were all excited to be on tv! The kids loved it! It's such a great feeling to see Max's story being used to motivate people in positive ways. We hope that sharing it led some people to consider donating blood. I still don't have a copy of the story but, as soon as I do, I'll get it out on YouTube so that those of you that missed it can see it.

The boys spent another half day at Xavier basketball camp the first week of August. They had a ball again and got to meet and play with a couple more XU players that they idolize. Ellee and I enjoyed watching them and walking around a bit on Xavier's campus. We are all looking forward to attending XU basketball games TOGETHER this year!

On August 7th, Max, Alex and I spoke at the Soccer Marrowthon here in Cincinnati. The pictures of the kids in the t-shirts are from the Marrowthon. The back of Max's shirt reads, "SURVIVOR" while the back of Ellee's reads, "I SAVED A LIFE". They are awesome! The Marrowthon is held to raise funds and awareness for the Be The Match bone marrow registry. It is a cool event with soccer games going on for 24 hours straight! They asked us to come up and share our story with the crowd to again motivate people - this time to donate their marrow. We spoke for about 5 minutes and received many comments about how touching and inspiring Max's story was. He got a HUGE round of applause as I talked about him being almost 500 days post transplant and returning to school in just a few weeks. I know it made him feel good to be treated like the hero that he is! We later heard from our Be The Match coordinator that the Marrowthon was a huge success. They were able to register a bunch of people and collected lots of funds to keep the non-profit registry operating. We know how much Be The Match helped so many of the friends we met at the hospital so, we are thrilled to be able to help them out.

The next Saturday, August 14th, was Max's day +500...obviously an enormous milestone in our eyes! We spent it celebrating in a couple of wonderful ways. First, my mom, dad and I served a meal at the hospital with Max's Meals. This was the first meal that we did "just because", in other words, we didn't have a special occasion or holiday that we were celebrating. As always, we shared Max's story and progress with several of the families that came in to eat and we can truly say that we saw it brighten many faces. I know that hearing he is at day +500, doing great and returning to school in just a few short weeks is such hope for those folks currently stuck down there in the midst of treatment. You can literally see it in their faces when they hear it.

We were warned right as we arrived to serve the meal that morning that it was a particularly difficult day on the floor so, we were sure to take that into account and be mindful of it while we were there. We later learned that one of the patients had passed away that morning. We found out because his grandmother came in to get a plate, on the encouragement of many of the other parents, who then told us what had occurred that morning. We all cried together as we served the grandmother the food and offerred our condolences. The Hem/Oc/BMT floor at Children's is unfortunately a place where this kind of news is all too common. It is an extremely tough place to be. I am so thrilled that, with the support of so many of you, we have been able to launch Max's Meals and begin to help these families cope. I have grand visions of doing so much more to help them too and we are beginning to step in that direction. As always, I will keep you all posted as Max's Meals grows and further fulfills this mission.

We spent the rest of day +500 and +501 celebrating Max's fabulous progress with our church and expressing our gratitude for his healing. We attended a celebration party at our Pastor's house that evening where he shared Max's story with the group and an amazing blessing before dinner. The next day, Sunday, there was a beautiful prayer shared during each service, in gratitude for Max's progress, followed by cakes which we brought to celebrate with the congregation. On Sunday evening, we decided to go out to the Montgomery Inn Boathouse, one of Cincy's most famous restaurants to celebrate. The kids had never been there and really enjoyed eating delicious ribs and watching boats cruise up and down the Ohio with Gaga, Mama, Papi and Uncle Patrick. It was the perfect weekend spent celebrating an amazing little boy and his awe-inspiring miracle!

This week has been extremely busy for me, preparing for the start of school for both Max and Alex next Wednesday! We have been up to school multiple times to pick up packets, have Alex's kindergarten orientation and meet with their teachers. We headed up again this morning for a big meeting with the principal, health aide, district nurse, counselor and Max's teacher to be sure they were all informed about Max's current status and needs...and to be sure that Mom and Dad feel comfortable that they will be watching out for him while he is away from us! The meeting went well overall and we are comfortable that Max will be well taken care of at school and we will figure things out as time goes on. Of course, I am filled with mixed emotions about this return to school. I am thrilled that Max is well enough to head back and can't wait for him to be a third grader again...and yet, I am a bit terrified! Although it's a hugely positive step, it feels like one of the biggest adjustments that we have had along this journey. Imagining not seeing Max for almost 8 hours at a time is hard to do, not to mention that I cannot believe that Alex is ready to head off for kindergarten!!! I know that the first few days are going to be weird and tough for me...I expect some tears (fair warning for you other parents at the bus stop, ok?!?) But, I also know that with time, this is going to be great for all of us. We are very ready for this next step.

Admist all of that, we have had lots of fun times just enjoying the summer. We took a trip down to ride the rides at an amusement park here in town, Coney Island, on Tuesday with Aunt Monica and cousin Ben. Mommy was a bit sick from all the spinning but, Max, Alex and Ellee had a ball. We have also been to laser tag recently, had sleepovers with the cousins and gone to the movies with Mama and Gaga. Max has continued playing basketball with his team in the summer league and has been the leading scorer in a couple more games! It is so awesome to see him out there, playing his heart out!

Max's return to school next week will be another immensely important milestone for all of us along this journey. So many times along the way, we dreamed of this day coming again...now it is almost here! We have been so blessed! I said to someone recently that I feel like so many positive things are coming out of Max's journey now and people are seeing so many good things happen, despite our hardships. It's a dream come true! Thank you to all of you that continue to follow along with us and support us. We are so lucky to have you and appreciate your continued thoughts and prayers.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +484: Back From A Great Vacation...In The NEWS!!

2010-07-29T14:47:00.005-04:00

It's day +484 for Max and we have been back since Saturday from our wonderful week in Hilton Head with the Meyer family. Everything went extremely well for Max and all of us on our visit down there. I have to admit that Matt and I both breathed a sigh of relief as we packed up to head home, realizing that we had made it through another trip without issue for Max! It's so great when things go so well and we are able to get away and really enjoy it, without thinking much about doctors appointments or blood levels, etc. We all enjoyed the beach, the pool, biking, putt-putt, The Salty Dog, Shelter Cove and just hanging out with all our fun family members (there are tons more pictures at the link on the right of the blog). At one point in the vacation, I said to someone, "if people only knew us down here in Hilton Head, they would never know what had transpired with Max over the past 18 months!" The last time we all went was two years ago and, little did we know at that point what lie ahead of us.

Although we had a great time in Hilton Head, avoiding the sun to protect Max's skin from developing any graft vs. host was a bit of a challenge. We ended up rigging up a shady area in the pool with a big tent so that he could swim during the afternoon and spend more time in the pool. We were careful about how much time he spent out on the beach, even with full sunblock, a hat and long sleeves, that sun down there on the beach is just brutal. We did our best to spend no more than 2 hours out there during the peak sun time (from about 10 - 4). As the week went on, it did become apparent to us that the issue of sun protection for Max has quite a dramatic effect on our entire family, particularly on vacations. We just don't vacation to places where you spend a lot of time inside! In fact, I don't think most people do!

We were quite struck by this, as the sun issue has been largely "glossed over" by our doctors. It just made us realize, once again, that there will be long-lived ramifications of Max's journey for all of us and that we need to continue to adjust to our "new normal" by learning our safe limits and getting creative about how we do things. Once more, we did mourn a bit for the old innocence of our lives - when we could just go out on the beach and stay all day, as long as we had some sunblock! But, we aren't going to stay in that place. We are going to find new ways of doing things and explore other options so that we find ways to have just as much fun!

Since we have been home here, we have been busy, once again! We had a very exciting afternoon around here today. Channel 9 news, WCPO here in Cincinnati, visited us here at home this afternoon, along with two representatives from Hoxworth Blood Center. WCPO and Hoxworth are holding a joint blood drive next Wednesday, August 4th at several of the donor centers around town. They wanted to feature a blood recipient and their family to help promote the drive so, they chose Max!! They were here for about an hour today and did interviews with Matt, Max and I and then shot video of the boys shooting hoops and Ellee reading (their favorite afternoon activities). They are going to let me know exactly when the story will air but, they expect it will either be next Tuesday, August 3rd or Wednesday, August 4th during the drive. I'll be sure to let you all know once I know more!

On another exciting note, our dear friends, the Merks, were featured in a story about Give Kids the World (the village where we stayed on our Make A Wish trip to Disney) on the Today Show this morning! You can watch it at the following link: http://today.msnbc.msn.com/id/26184891#38466034. It sure brought tears to my eyes! GKTW is just an amazing place! The more publicity that it can get for it's mission and what it does for so many families, the better! You can see that little Tony and his family enjoyed a fabulous time, just like we did down there. Tony continues to do well so far through his treatment to fight his cancer again. The family is hanging in there and appreciates all your thoughts and prayers.

Reporting good news to all of you lately is becoming a regular thing, I'm happy to say! We are gearing up for the big return to school this fall for Max and for Alex's start of Kindergarten and Ellee's start of Preschool! These are exciting and happy times for all of us. We are so grateful for Max's continued progress and for all of the fun we are having. We are so enjoying life these days.

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +469: A Couple of GREAT Days

2010-07-14T22:39:00.007-04:00

It's day +469 for our Max-Man and we just wanted to share some good news and some neat things that have happened recently with all of you loyal supporters. Max started playing basketball on Sunday in a summer league with some of his buddies from school. He had asked me about doing this some time ago and we talked with Dr. Davies about it and she said it would be alright so, Aunt Monica helped organize a team and get it setup.

The Redhawks began with a bang as they had two games scheduled the first day. I wasn't sure how Max would do, given that he hasn't had that much physical activity in some time now but, I knew he had surprised and impressed me before with his stamina and I also knew how excited he was about this team. He was amazing! He ran up and down that court as fast as he could and kept up with players literally almost twice his size! If you did not know what he has been through, you would never have guessed! Even more impressive, however, is that in the second game, on a 10 foot hoop with a regulation size ball, Max was the top scorer for the team!!! He sunk two baskets and when your team only scores 10 points total, that makes you the top scorer for the game! :) He was so excited and proud of himself and Matt and I could not have been prouder. It was really something, to say the least. Parents on both teams knew Max and his story and we all had tears in our eyes as we watched him out there, playing his heart out. It was truly a dream come true for Max, Matt and I.

On Monday, Matt, Max and I met with Dr. Davies to have our discussion with her regarding the overall status of things with Max and the road going forward at this point. While the news wasn't great, it was really good and we were all pumped up as we left the meeting. Overall, Max is doing very well right now and the transplant has accomplished the goal that Dr. Davies had for it at this point. However, we are far from done and realize even more that this disease and monitoring Max's health are a part of our life forever now. Here are some highlights from the discussion:

Overall, Max is doing great right now. As Dr. Davies put it, “the goal of the transplant was to restore his blood counts to normal levels and they are good and staying there.” Thus, the transplant is accomplishing what we set out to accomplish at this point. His blood counts are essentially normal and he is returning to real-world activities. He has a functioning immune system again!
After our talk with Dr. Davies, Matt and I consider Max to be “in remission” from Aplastic Anemia. In this way for Max, it is much like cancer or leukemia. The one challenge that remains is that some of Max’s own t-cells (the strong, infection fighting white cells and the cells that caused his bone marrow failure and Aplastic Anemia in the first place) are still there, thus causing his mixed engraftment (ie chimerism) that you have heard us talk about. Because of this, there is a chance that these t-cells could cause him the same problem again. Dr. Davies considers this to be unlikely at this point, as it usually would happen in the first 3 months post transplant. However, as a result of this mixed engraftment, she is going to keep him on the cyclosporine for some time yet and will be monitoring his blood levels once a month for another year to two years. After that, we will go to once every other month monitoring and then eventually 4 times a year (ie every three months). Unfortunately, this is not ideal. 100% engraftment with Ellee’s marrow would have been better but, she did everything she could to try to achieve that. That being said, Max is fine to have a mixed chimerism, as long as his counts remain good and safe with it. She will be watching how his engraftment level shakes out over the next year or two and if things stabilize and his counts remain good, she will be even less concerned.
The guidelines that we have been under regarding contacting them for fever over 100.4 or rash, etc. remain in place with one major exception - she said that we do not need to “serve time” (ie spend the night in the hospital or even go down to the ER on weekends or after hours) at this point!!!! This is HUGE news and makes a TON of difference to Matt and I in what we can all do, etc.
Max will return to school as a “normal” third grader in the fall!! She expects him to be able to do everything that the other kids are doing. She just wants us to develop a strong relationship with the school nurse so that she can keep a close eye on Max and so that we can know what is going around the school and react as necessary to keep him safe.

Beyond all that news, we are busy preparing for our upcoming trip to Hilton Head with the Meyer family next week! We are all GREATLY looking forward to it! I have also been hard at work on some activities for Max's Meals and have gotten involved with a family that has a memorial golf outing in honor of their father each year to benefit the Make A Wish Foundation. Meghan Olson was Max's Wish Volunteer Coordinator and, in getting to know her a bit, we realized that her family and their annual outing were making Max's Wish possible. Thus, Matt and I really wanted to "pay it forward" and get involved with the outing. As a result, many of you Cincinnati friends and family members will be receiving invitations to the 7th Annual William S. Olson Memorial Golf Outing & Silent Auction to benefit Make A Wish. The event is in October and we would love to see many of you there!

The discussion that we had with Dr. Davies on Monday was just what Matt and I needed to begin moving forward with our lives at this point. We are thrilled that Max has progressed as well as he has to this point and feel incredibly blessed that he has done so well. Although the future remains uncertain, we have learned that life is never certain. You never know what journeys lie ahead or what challenges await. As always, we continue to live in the moment, counting our blessings and being grateful for every minute we have together.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +462: Summer Fun

2010-07-07T08:24:00.013-04:00

It's day +462 for Max and he has been doing great! We have been so enjoying life for a while now that I haven't taken the time to update in almost 20 days! We have been busy having fun so, I thought I'd share some of it with all of you.

We enjoyed a great Father's Day together with our families, celebrating all the fabulous dad's we have in the Meyer and Sherwin clans. My mom, dad, Matt's mom and I all went down to the hospital that morning to serve a delicious lunch to all the dad's on A5 from Max's Meals. Matt's cousin, Leah and her friend, Sierra have just opened a new catering business and restaurant so, we had them cater the lunch and they did a fantastic job. It turns out that there is quite a story and connection to A5 for them too that I was totally unaware of when we set up the meal. Sierra's sister was treated at Children's for cancer and unfortunately lost her battle just over a year ago. Sierra has always wanted to provide food to the families on the floor but wasn't sure how to get started. I think the experience was somewhat healing for she and her family. We are definitely planning to work together on more meals in the future.

As always, the lunch was very much appreciated and eaten up! The Child Life worker that has been helping us the past few meals said to me as we were leaving that the meals were so much more than food to the inpatient families. We have really come to see how much hope that we represent to those parents (and even some kids) that are currently stuck on A5, fighting their battles. I think seeing us and hearing Max's miraculous success story, in combination with eating some yummy and nutritous food, does a world of good to lift spirits on the floor...and that's exactly what we are hoping for!

Later that day, our families presented Matt and I with a very special gift in honor of Father's Day and my birthday. They had created a memory quilt for us and filled the squares with all kinds of personal thoughts about Max's BMT journey. It is such an amazing and unique gift. We have all loved looking at it time and time again and reliving many of the moments that we have shared along the way. I can't wait to show it off to everyone that visits! It is a true family treasure!

We have spent the last couple of weeks catching up on fun, again! Max got to spend some time with some good friends from school that he hasn't seen much of in the past 18 months. He and Alex played with their good buddies Jon & Tim one day and with their buddy Cam again. They have really enjoyed just hanging out with friends again and doing things they used to love doing with them. They can be found out in the neighborhood just about every evening, holding a full baseball game on our front lawn. Matt is almost always involved as well, if he is not traveling. It has become a summertime staple and we are all enjoying it immensely!

We also tried out swimming again in our neighbors pool last week. We used ear plugs and washed Max's ears out with a special solution that his ENT recommended after he was finished. So far, so good. He complained of a bit of ear pain last Friday night and we got worried -- but, it passed without issue, thank goodness! Max has totally enjoyed swimming again and Alex and Ellee have been loving it too. Alex is taking some private lessons right now too as he missed out on a critical year of learning last year and, as a result, was a little scared of the water. He is making great progress and has been scooting around on his own in the pool the last few times where he can reach (under my super watchful eye, of course) and enjoying it more and more every time. We are really looking forward to our family vacation with all the Meyer's in Hilton Head in just about 10 days! I'm sure we will all do tons of swimming there!!

We fit a trip to the Reds game in as well last week! The boys loved the game, as usual and learned about "rally-caps" as Joey Votto hit a three-run homer in the bottom of the ninth to tie up the game! It was very exciting. It was Ellee's first trip to a game since we went last July with Make A Wish and she enjoyed it too - mostly the eating part but, she was cheering and dancing as well! It was another wonderful summer-fun night!

Last Friday evening we had our dear friends, the Merks over for a cookout. As you will probably remember, we met the Merks while in the BMT unit with Max as they were there with their 4-year old son Tony, battling meduloblastoma (cancer of the brain and spine). As I told you in my last update, Tony's cancer has returned and they are again engrossed in a battle for his young life. Despite this struggle, we all enjoyed a great time together. It was the first time that we have all been able to be together since we met and the kids really enjoyed each other. They have three other boys, Alex, Ben and Max (crazy coincidence with the names, huh?!?) who are between 16 and 10 and our Max and Alex really thought they were cool. Our boys also loved getting to know Tony who they have heard so much about from Matt and I. Ellee and Tony hit it off as they share a love of books and had a ball together giggling away on the trampoline. It was so nice to just be able to take an evening and enjoy life together with the Merks like that. We are all on the same page, so to say, given our shared experiences. Although Max and Tony's diagnoses are different and their treatment paths have been very different, we have all experienced the same life lessons along our journeys. It's hard to understand this journey without having experienced it yourselves so, it is so wonderful when you have friends that have "been there and done that" too. It's just a bond that you can't find easily otherwise. We feel like the Merks are part of our family and we are breathing heavily with all of them right now as Tony faces his current battle. We pray everyday for all of them and think about them constantly. We hope to spend many more evenings like last Friday with all of them in the future.

As our journey continues and we experience more and more fun along the way, we are constantly reminded of our many, many blessings. There isn't a moment throughout our days that we do not think of the families that we have grown to love and care for that have not been able to experience the miraculous healing that we have seen with Max. The Akins, the Alfreds, the Martins, the Sneads, the Bradleys and the Merks are constantly on our minds. Their children's struggles and their family's tough journeys have taught us how important it is to cherish every moment. No one knows what the future holds - all we can do is make the most of today, enjoying every minute with those that are dear to us and doing our best to share love with everyone we meet. On that note, I came across a quote from Mother Teresa recently that I wanted to share with all of you - it has definitely become my mantra:

Spread love everywhere you go: first of all in your own house. Give love to your children, to your wife or husband, to a next door neighbor... Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness; kindness in your face, kindness in your eyes, kindness in your smile, kindness in your warm greeting.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +444: Some Fun...and Some Sadness

2010-06-19T08:37:00.007-04:00

It's day +444 for Maxer and he is doing very well. He has been greatly enjoying the last few days and we have been packing in the fun activities! Yesterday was the highlight of our fun the past few days as Max and Alex attended the Chris Mack Little Dribblers Basketball Camp at Xavier University (Go Muskies!). It was intended for kids 4 - 7 but, I wrote them and asked if Max could attend with Alex, given his current medical state and energy level and they happily said it would be fine. The boys LOVED it! They had a ball learning lots of skills and shooting hoops with some of the current and past XU players and Coach Mack. It was an excellent camp. We are heading back in August for another day. I thought you all would enjoy some pictures from their time. There were several media crews there too so, the boys were both on the news briefly last night (Max on Channel 9 and Alex on Channel 12...I'm hoping to get links today and will post them for you) and there are some pictures of them at the following link from the Cincinnati Enquirer: http://news.cincinnati.com/apps/pbcs.dll/gallery?Site=AB&Date=20100618&Category=SPT0102&ArtNo=6180805&Ref=PH&Params=Itemnr=1 ArtNo=6180805&Ref=PH&Params=Itemnr=1 Enjoy their smiles! The best part of the whole camp for me was that no one knew a thing about Max's situation and therefore, he was just "one of the kids" enjoying the camp.

Unfortunately, once again, we also have very tough news to share from our BMT family. Our dear friends, the Merks who live here in Cincinnati and who we met while Max was inpatient for his BMT, received very difficult news about their precious son, Tony this week. His cancer has returned. Tony is 5 and has already been through an extremely intense battle with this cancer, meduloblastoma. He had received several great reports that his body was free of the cancer in the past six months or so and then, suddenly this week, they got the news that it had returned. Once again, we are crushed by this revelation. It is heartbreaking and it is so unfair. The Merks are reeling from this news, of course and are currently trying to decide what course of treatment to pursue for Tony, once again. We would just ask that you keep their entire family in your thoughts and prayers right now and for some time to come.

It's been a very trying week again for our entire family. Sometimes the news from our BMT family is so devastating that it's difficult to go through a day. It tempers everything when you see life in this way and are constantly reminded how fragile it is. As I sat at the basketball camp with Ellee yesterday, watching the boys having a great time, my head was filled with thoughts of the Merks. It was so wonderful to be able to watch the boys just being boys...I just want that for Tony and all the Merks too.

Thanks for your continued love and support for our family and all of the BMT families that we have grown to love and care for.

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +441: Learning to Live

2010-06-16T15:47:00.008-04:00

It's day +441 for Max and he is doing great! He looks great, feels great and had a blast this afternoon playing with Alex and a good friend from school that he hasn't had over in probably almost 2 years, Cam. We went down to see the ENT at Children's this morning and Max's ears are great, finally. They have cleared up and look "normal", in the ENTs words. You can tell by looking at Max. I realize now how much he has been sufferring with the pain in those ears the last 10 days or so. We were both so happy that things are finally healing that we stopped and picked up donuts on the way home to celebrate!

Unfortunately, we got some very sad news on Monday evening of this week. One of our dear friends, Ethan, who was in the room next to us in the BMT unit, lost his battle on Sunday and earned his angel wings. You may recall that I have spoken of Ethan Alfred and his wonderful family many times before this. They have weathered unimaginable hardships, as Kathy, Ethan's mom, was separated from her family in Minnesota while she was here with Ethan for over a year. They were finally able to get closer to home a few months ago in a Minnesota hospital but, sadly, Ethan never made it home. He was only 21 months old and spent his entire life fighting to live. Nothing about this situation is understandable or even comprehensible.

As I tucked Max and Alex into bed last night, I told them about Ethan's passing. They were both very upset and troubled, of course. I tried to console them by saying that it is very hard to understand that these kids fight so hard for so long and don't win their battles. Alex said, "But, mom, we're winning...Max is winning." To which Max said, "That's right, Alex but, we ALL want to win...every one of us kids on that floor want to win!" Wow...once again, he impresses me! He has so understood things that I didn't know he would. It's one of the huge blessings that has come out of this journey for him, especially.

We ended the conversation by talking about heaven and saying that we have many kids who's families we met and grew to love through this process that are up there now - Ethan, Matthew, Andrew, Natalie, Jerrid and Troy. It's hard to believe that this many of the kids that we shared our time with during Max's BMT stay have not made it. It's incredibly saddening and sobering to think about all of them and to realize, once more, how amazingly blessed Max and all of us have been throughout this process. Matt and I say it all the time to each other - there is just no way to explain how blessed we are. I ended my talk with the boys by saying that in everything we do moving forward with our lives, we need to honor all of these kids and their heroic fights. The boys whole-heartedly agreed.

To that end, I am moving forward with a passion around Max's Meals. I have met with a lawyer (a family member that is helping me out) about pursuing the official 501c3 non-profit designation. I am pulling together some business plans and a Board of Trustees. In addition, we are going to expand the mission of Max's Meals - we are also going to have a piece that Max will "run" by deciding what kind of entertainment items (ie game systems, toys, etc) to donate to the patients of the Cancer and Blood Diseases Institute at Children's and we are going to have another piece dedicated to raising funds for the valuable research done by the doctors at Children's. We are getting very excited about this whole venture. I'll keep you posted as things move forward. Unfortunately, it doesn't look like the Pepsi Refresh project is going to work out for us. We haven't gotten any movement in our standing in some time and, as I looked around at the other ideas, I realized that it is largely a popularity contest. There isn't a whole lot of merit to what wins, not that there aren't some great ideas in there...but, there are some not so great ones leading the packs at some grant levels. Please continue voting, if you can but, I think we can pursue more merit based grants in the future.

Things have calmed down once again around the Meyer homestead and we continue to feel incredibly grateful and blessed. While this journey has been long and difficult, and we are sure that there will be more bumps in the future, it is one miraculous and beautiful story. We will never forget all of the sweet kids that we grew to love through this process, especially those that have passed. As one of my friends at the hospital likes to say, "it's through every one of these kids and their experiences that I truly learn how to live."

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +439: Home Sweet Home

2010-06-14T21:36:00.002-04:00

It's day +439 and we are home! We got home about 3:30 this afternoon and Max is doing very well. His ears are much, much better and he is in fabulous spirits to be home with his brother, sister and dog (and his mom and dad too). We are all exhausted from the events of the past few days and all the shuffling around and lack of sleep so, that's it for tonight. Lights out at the Meyer house with everyone tucked into their own beds...hooray!

I'll give you more details soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +438: Bumping Along

2010-06-13T12:56:00.004-04:00

It's day +438 and our bumpy road has unfortunately returned as I am writing this update from the hospital. Max was admitted last night after his ear pain continued yesterday, along with unusual fatigue and a fever to the point that, per doctors orders, I had to call the BMT doctor on call. He is resting comfortably today and we are hoping to be released tomorrow or Tuesday at the worst. At this point, the doctors think that he is still experiencing painful ear infections in both ears and it is a bit concerning that they have not cleared by now, given the antibiotics that he has been on the past 8+ days. So, he is getting IV antibiotics around the clock along with antibiotic drops in both ears. They have also drawn multiple cultures of his blood and nasal secretions to see if there is any "tough" bacteria in his body that they may need to combat with some other type of medicine.

We were also down here on Friday most of the day and did see an ENT while we were here. The ENT was able to clean his ears out and take a good look and felt that the infection was still there because there was so much gunk in them that was blocking the antibiotics from treating where it was needed.

It's hard to believe that we are actually in the hospital for ear infections but, it is a perfect example of the BMT world we are living in and the type of treatment that can be required to help Max through. Max is remaining generally calm about everything and did an amazing job yesterday in the Emergency Department (where we have to come through after hours and weekends). Unfortunately, it took four tries to get his IV placed and that is not fun for anyone! He weathered it like a champ, better than he has done in sometime. Obviously, that helped me tremendously. I have been able to also remain calm and rational about this whole situation so far and that is somewhat new for me, coming in to the hospital like this. Usually both Max and I are a mess emotionally. It's so difficult to give up control over your life and re-enter like this. You never know what is really going on and how long you might be here, etc. But, I think the events of the past couple weeks have helped us both to deal this weekend. We have come to grips with the reality of where we are and our current "normal" and we all just know we have to deal with stuff like this for a while yet. We also know that eventually it will not be this way. In the meantime, we are all wearing our "Livestrong" bracelets from the Lance Armstrong Foundation so that we can remind ourselves to dig deep and get through when we need it.

Max's biggest struggle today is missing his doggie, Spud. He doesn't want to talk about him or think about him as it makes him sad. He is in love with that dog and has missed their regular morning couch cuddle today.

Matt has told me that Alex and Ellee are hanging in there pretty well. They were sadly looking out the storm door yesterday as Max and I pulled away to head to the hospital. They don't want this to happen either...they are tired of it too! Thank goodness for my mom and dad and Matt's mom who quickly jump in to help out with them everytime we find ourselves in this kind of situation. What would we have done without out wonderful families to hold us up this past 17 months!!

Matt and I are taking this situation as yet another data point in our decision making about how to balance things correctly for Max moving forward. We feel like doing this regularly is not sustainable and we want to avoid it as much as possible for all of our sakes. Thus, we remain anxious to have our discussion with Dr. Davies in July regarding the big picture and how best to navigate things moving forward.

The only advice I'd like to leave you with as I end today is don't ever take your family time for granted. Rejoice in the simplicity of just being at home all together, even on the boring days. These experiences of separation for all of us have made that time together so special and precious. Hope you can make the most of it too.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +433: Getting Back on Track!

2010-06-08T22:57:00.004-04:00

It's day +433 for Max and he is finally feeling better, thank goodness. Things have calmed down around here again and we are slowly getting back on track. I spoke to the hospital on Monday and the results of the labs they sent on Friday were all negative - in other words, Max did not have chicken pox or any of the other viruses that they typically check for down there. That was a huge relief, of course. His ears continued to really bother him until this morning, unfortunately. He had some bloody drainage come out of both of them over the past few days but, they seem to finally be feeling better tonight. Poor fella...he was really in some serious pain with them. He told me tonight that they had hurt worse than an IV...we all know that is really saying something for Max! Given all this, I have requested that an ENT see him as soon as possible so that we can have an expert look in those ears, etc. and see what is going on. Hopefully we will get into one later this week or early next. In the meantime, no swimming for now! We are also going to check into some ear plugs that they recommended so that Max can hopefully get back to swimming safely before too long this summer.

Based on last Friday's difficulty for Max, we are also going to be talking to a psychologist with him. I am glad that we are doing this and feel that it will be very helpful for him. His Nurse Practitioner and I agree that he could use some outside help to just get some of his feelings out and to help him learn some coping mechanisms. I have been surprised that there has not been more involvement from the psychological perspective throughout his journey so, I am happy to be getting some help in this area soon.

The last week has been scary for all of us and has shaken our confidence again. I think we are just tired of getting a bit "burned" when trying to return to some normalcy. However, this situation has been important because it has made us realize that this is part of our "new normal" and that being prepared for it will help us all to deal with it more effectively. We have requested a meeting with Dr. Davies also so that Matt and I can have some time to sit with her, without Max there, to really understand the path moving forward and all the possibilities. We feel like we need to know this so that we can strike the right balance for Max. We want him to be back in the real world as much as possible but, we also want things to be as safe as possible for his health. If that means that remaining patient for a while yet and not doing everything we might like to do right now is the best thing for Max, then that is absolutely what we will do. To ensure a bright future for Max, we have no problem being more patient!

Alex and Ellee continue to roll with the punches pretty well too. Having Max under the weather the last week was tough on them too. It requires more of mommy's time to look after him again and to be at the hospital, etc. and I sense that it makes them uneasy as well. They are just as worried about their big brother as anybody. He means the world to them and they don't want to see him sufferring or unhappy either.

As we have said many times in the past, the BMT process is a marathon, not a sprint. One of the favorite sayings among BMT families is, "slow and steady wins the race." We have lived by that motto for over 18 months now and will continue taking things one day at a time, enjoying every moment we spend together, weathering this journey as a family.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +430: Another Bump In The Road

2010-06-05T14:18:00.003-04:00

It's day +430 for Max and unfortunately, we have hit another bump. I feel it only fair that to truly represent the voyage of a BMT patient/family, I need to share both the ups and the downs. Beginning Thursday at about 4:00 pm, we started to hit another, hopefully relatively minor bump in Max's BMT road.

He had spent the day enjoying himself. He went to a movie with his tutor, her son and Alex to celebrate the end of the school year and had a great time. He was playing outside and came in to tell me that his left ear hurt. I immediately thought of all the swimming he had been doing, thought it might be swimmers ear, and quickly called our Nurse Practitioner at Children's to see if she had any suggestions to help him out. She recommended letting it be and calling the on-call BMT doctor if anything worsened overnight so that he could be seen down at the hospital. Max made it through the night but, not without waking up about every 2 hours with ear pain. So, first thing Friday morning, I called our Nurse Practitioner again and they squeezed him in for a clinic visit yesterday.

We headed down to the hospital, thinking that we would hopefully be in and out within an hour or two with some antibiotics for his ear...but, that is not how this BMT world operates! Reality check time! Once we got there, three different Nurse Pracitioners checked out his ear. Although they could not see beyond the wax in his ear, they assumed it was infected based on his reaction to their touching/pulling on it. I pointed out a few bumps to them that have been coming and going on Max's body the last few weeks and that's where the concern started. They ended up bringing one of the BMT doctors in and she suspected that the bumps may be chicken pox. As a result, they kept us for six hours, had Max get an IV so that he could get a bolus of fluids, an antibiotic and an antiviral that could help if it were chicken pox. They won't have results of the testing that they did for a day to three days so, we won't know if it is chicken pox or possibly some other virus until then.

Of course, this was all quite a shocker to Max and I. He did not handle it well, to say the least. At the worst point, he had backed himself into the corner of the bathroom attached to his clinic room and was screaming at me and the three nurses in the room. He kept saying, "I have been through enough! I am NOT doing this today! I am in charge of me and I am leaving!" He was basically hysterical and thus, I was a mess as well. We finally got him up on the table to get his IV but only by threatening him that I was going to leave the room first. It was awful...awful. Thankfully, once we got the IV in and the fluids and meds running, things calmed down and he took a good nap for about 2 hours. He had thoroughly exhausted himself emotionally and physically. I was again amazed and impressed with the nursing staff and our Nurse Practitioners. They made sure that I was alright as well as Max. I had some wonderful discussions with two of them and it really helped me to put everything in perspective. We did get to come home last night, which we are beyond grateful for, and that made all the difference for Max. He came home on two new oral meds and two new ear drops so, it kind of feels like a step backward, to say the least. But, he has been resting here since and is showing some improvement today. We are keeping a close eye on him and are happy to know that Dr. Davies is on call this weekend, should anything worsen.

I share this situation with you because I think it's important for you all to know about both the ups and downs that we are continuing to experience, even at this point in our journey. This remains tough...very tough for all of us. Yesterday was a huge reminder of how delicate Max's health remains and how important it is for us to drop everything anytime that things are not quite right with him. It was a reality check, to say the least. This is our life now and for some time to come yet. I alluded to it in my last post...this is what I meant when I said that we are not "back to normal." We really are not even close.

We are so grateful for the excellent progress that Max has made and for so many things about this journey. We have learned so much and truly experienced a miracle. Yesterday was just a reminder that we have to continue to take things slowly, one day at a time, appreciating every moment we have together.

Matt and I are determined to continue trying our best to pay it forward at the same time. Yesterday, Matt played 100 holes of golf with the Cincinnati Golfers for Charity (CGC). With this event, the CGC raised over $100,000 for the Make A Wish Foundation and Cancer Free Kids, two amazing charities. Matt was thrilled to have surpassed his fundraising goal of $2,500, with the help of many of you. I am continually encouraged by our progress with Max's Meals and the Pepsi Refresh contest. We are climbing up the ranks and are currently in 61st place. I think with persistence and daily voting, we may make it into the top 10 and get the $5,000 grant for Max's Meals!

As you all know, Max, Alex and Ellee are the most precious people in Matt and I's lives. We will do anything we have to do to keep them safe and happy. Our tough experience yesterday reminded us how fragile life is and how important it is to live in the moment. We hope by sharing our life, you will find yours even more meaningful.

We'll keep you posted...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +428: Fun, Fun, Fun

2010-06-03T06:58:00.012-04:00

It's day +428 and I wanted to catch up a bit on my blogging. It's been a while since I've updated because we've just been too busy having FUN!!! :) It's been wonderful. Our trip to Disney with Make A Wish was absolutely a turning point in our lives. Since we've been back, we have had more fun and seen more people than I think we have in the past 10 years!

Our picnic celebration and Max's bash at Ollie's Skatepark the next morning were a blast. We had about 250 people come to Beech Acres to celebrate with all of us and every one of us enjoyed it. The boys ran around between the skatepark, the ball field and the playground with all of their friends to the point that we barely saw them! It was kind of a special thing if an adult that came actually got to see Max! He loved it. Being at Beech Acres and seeing Max be able to run around like that, enjoying himself was somewhat of a metaphor of the entire experience for me. We have been to that park many times in the past 18 months to take a walk or let him ride in the skatepark when no one else was there. But, during those visits, I had to tell him that he couldn't play on the playground (due to the germ risk there) or ride his scooter in the skatepark if there were other kids there. So, it was something to be able to see him being him again, with essentially no restrictions there. It did my heart very well.

The party at Ollie's the next morning was a ball too. Every kid that came got out there in the skatepark and tried it out and seemed to really enjoy it! The adults had a great time too, just watching the kids having fun! Many people had not been there before and have told me that they are going to go back and try it again, their kids had so much fun. Of course, Max was in his glory. He was zooming around those ramps just like he used to, with no fear or hesitation. Again, it did my heart very well to see him like that.

Overall, the celebrations really continued the healing process for all of us. My aunt came all the way down from Cleveland for the picnic and she commented that being there really helped her with her healing. I agree completely, Lauri. We are getting there big time.

I do have to admit that the week of the parties was quite emotional for me, which surprised me somewhat. I would find myself crying easily, something that I have not done in a while. I finally took the time to figure out why and realized that it was a combination of things. Early on in Max's journey, Matt and I decided that we had to pull ourselves together and be strong for Max -- that we couldn't cry and wallow in the sadness of the situation but, that we had to do our best to make the most out of every day and stay as positive as possible for him. Thus, I have said many times to Matt that I knew I would be emotional when the good times came. In addition to that, I think I was emotional that week because the reality of Max's situation set in more than it has prior to this point. When I imagined us at the point of having a celebration party in the past, I imagined us being "back to normal". As I prepared for the parties that week, I didn't feel "back to normal". Max's health is still very fragile and we remain constantly on alert with him, in fact we almost had to head down to the hospital the Thursday before the party for a fever (thankfully it subsided and never hit the 100.4 mark where we still have to call and rush down to the ER); he wasn't back to school regularly (just visiting his class a few hours a week); we are still down at the hospital at least once a month to have Max checked out and receive medications; Max remains on significant medication; etc, etc. (you get the idea). What I realized that week, even more accutely than I had before, is that we are never getting back to the normal that we knew before. I have to admit that there was some mourning in me for that old normal, even though our new normal looks better and better all the time and Max has come so far. I was sad that we can't go back to the carefree innocence that we knew before - where we firmly believed that all of our kids would grow old and live long, full lives. We do our best everyday to focus on the positives in this situation and doing that has carried us through this ordeal very well. However, sometimes, the negatives creep in and get you. I think it's important that we acknowledge them and deal with them and then move on. And that's what we did that week.

The week after the parties, Max got up to school three times and really enjoyed it. We even went on a field trip with his class and he rode the bus with them! Then he rode the bus home on Friday afternoon too. It was such a joy to see his smile as he got off at our stop! Alex had his last day of preschool last week - he's now an official Wilson Elementary School Kindergardener (another emotional time for Mom)! We had a fabulous Memorial Day weekend too. We went to a pool party at a neighbors on Sunday and Max swam for almost 5 hours straight! He has always loved swimming but, I think there is something even more exciting and enjoyable about it for him now. My theory is that after you have been deprived of something for a period of time (as Max was with full body immersion for 10 months while he had his central line) it feels even better once you can do it again and you just can't get enough of it.

Yesterday was Max's last day of school. He went up to school for the Field Day fun on Tuesday and then went yesterday afternoon and again rode the bus home. Our neighborhood has a fun tradition of having the kids throw water balloons at the bus stop and then jump in a neighbors pool with their clothes on. Max was up at 5:30 am yesterday in anticipation of this fun! He was all smiles all day. I had to tear him out of the pool after almost 3 hours yesterday to get home for dinner.

Watching Max have all this fun is truly miraculous. Often I can't even believe that it is the same kid that endured so much this past 18 months. If you didn't know what he's been through, you would never know to look at him in these situations, having a blast. It's a dream come true. A real life miracle. We are just enjoying every minute of life now and having as much fun as we possibly can.

As always, we continue to feel eternally indebted to Cincinnati Children's Hospital and all that they have done for Max and our family. We think often of the other families that are just embarking on or in the middle of journeys like we have taken with Max. Our mission with Max's Meals is gaining momentum everyday and we are hard at work to continue providing comfort to those families currently living at Children's. The Pepsi Refresh project could provide us with some wonderful funds to further this mission. Please vote today and everyday until June 30th to help Max's Meals win! Just click here to vote: http://pep.si/dy9SyC.

Thank you for your continued love and support. We feel so blessed to have had such a fabulous support community by our sides during this difficult journey and look forward to continuing to enjoy life with all of you as we move forward.

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +426: Help!!! Need Votes for Max's Meals!!!!

2010-06-01T07:49:00.002-04:00

It's day +426 for Max and he is doing great! I have LOTS I want to blog about from the parties still and the end of the school year but, I'm going to save that for later and just ask you for some help right now.

A few months ago, I learned about something cool that Pepsi is doing to help improve communities throughout the U.S. They started a project called Pepsi Refresh where they are giving away $1.3M each month to fund great ideas, as they put it. They say, "we're looking for people, businesses, and non-profits with ideas that will have a positive impact. Look around your community and think about how you want to change it."

I tried for two months to get Max's Meals entered in the running for some funding and finally realized I had to stay up til midnight on the last day of the month in order to get the idea submitted. Last month, I finally got the idea in and I just found out this morning that it was approved!!! That means that Max's Meals is now in the running to receive a $5,000 grant from Pepsi if we get enough votes to be in the top 10.

So, here's the bottom line...I need your help. With your support and votes, Max's Meals can get a serious chunk of change to provide comfort to all the inpatient families in the Hem/Oc/BMT units at Cincinnati Children's. All you need to do is go to the link below and vote each day until June 30th for Max's Meals. You only get to vote for an idea once each day so, I need you to try to remember to go in each day this month at some point and vote for us.

Our community has already been so supportive of Max's Meals. With your continued support and votes, I know we can do wonders to comfort the families enduring difficult times at Children's. Thanks so much for your help. I'll keep you posted on how we're doing!

To vote, click here: http://pep.si/dy9SyC

More soon...I have LOTS of fun things to blog about!!

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +414: Ready to Party!

2010-05-20T06:43:00.013-04:00

It's day +414 for our little Max-man and there is HUGE excitement around the Meyer homestead! We have been busily preparing for the big party on Saturday and the Ollie's bash on Sunday morning. Max is so excited! He's already having a bit of trouble sleeping! When I went to tuck him in at 11 pm last night, he sat up and smiled and said, "I can't wait for this weekend!" We are ready to party...ready to celebrate! It looks like we are going to have a fabulous crowd of about 200 people! We're so happy that we can thank all of you for all your loving support and celebrate life with you!

I haven't updated since the blood/marrow drive a few weeks back. It ended up to be a success. We were able to provide 30 donations to Hoxworth, mostly from people that had either never donated before or who had not done so in a long time. Those were exactly the type of people that I hoped to attract to our drive. I also hope that they will now continue to donate so that their gift of life will continue. Thanks to everyone who donated and helped with the drive - especially Aunt Monica who organized everything once again!

Max has continued to do well since I last updated. We were down at the hospital last Thursday and Friday for some testing and his regular monthly check-up and medications. The testing on Thursday included a talk with the Endocrine team, an audiology exam and an echo cardiogram. The Endocrine team was pleased with his current growth and we agreed to just keep an eye on things over the next year or so. At this point, Max remains right along the same growth curves for height and weight that he was on prior to the transplant, which is great news. He is projected to be small, of course but, we were all very pleased to see that he has not lost any ground as a result of the transplant. His audiology exam showed some minor hearing loss in his left ear but, the doctors were pretty convinced that it may be from wax and fluid in his ears. So, we are treating that and hoping to get it cleared up so that he can be retested. We all feel confident that it is the cause of the hearing problem. We have not yet heard about his echo cardiogram but, with the way he runs around these days, I don't anticipate any issues there! We will finish up the annual testing this Friday with a pulmonary function test, some xrays to see where his bone density and bone age stand and an eye exam.

Last Friday was Max's normal monthly check-up and infusion of medications. His counts all look good and his engraftment from last month was fantastic - back up to 97.4%!! It was a bit of a rough appointment again as Max really struggled with the IV and his stomach. Although we are down to primarily once a month visits at this point, they remain difficult for Maxer. I think just being back in that hospital makes his stomach upset and fills him with anxiety. We are all aware of it and working to make him more comfortable again, as much as we can. It's just not what an 8 year old wants to be doing...even one day a month!!

Max's immune system has so far passed another test this week. Alex, Ellee and I came down with a pretty nasty cold last week and I was hopeful that Max was not going to catch it, thanks to the monthly IVIG medication. However, Sunday he began coughing and being congested and he has struggled with it this week. He seems to feel fine and has not run any fevers but, I am going to call down there today and have his cough checked out while we are there on Friday, just to be sure he isn't getting any infection in there. Now that we are getting more and more back to reality, "kid sick", as Dr. Davies calls it, will be part of the course. We just have to watch to be sure he doesn't develop any fevers that could be a sign that his system is struggling and he needs some intervention from the docs at Children's.

Because of this cold, Max hasn't been back up to school this week, unfortunately. I didn't want to risk him picking something else up while his system is already working to fight off this cold. We are planning to join his class on a field trip next week and get him up to school another time, hopefully. Several of his classmates will also be at the parties this weekend so, we are definitely getting him reintroduced. He is loving seeing everyone again and getting back to his old favorite things to do.

Since the transplant, we have teased Max that Ellee's marrow is going to make him start liking Hannah Montana or something girly like that. He always immediately denies it and laughs. So, we got a kick out of it the other day when he decided to put Ellee's sweater on (in the picture above). What a ham!

Matt and I got away a bit last weekend as we took a trip up to Cleveland last Saturday for my cousin's wedding. We enjoyed seeing all of my extended family up there and having some time to really talk to each other! It was hard to leave the kids, even though they were in great hands with Gaga (Matt's mom) but, we know we need to begin to take these steps again.

Several people have asked me lately for an update on Spud. He is doing great! He's HUGE! Much bigger than we expected. The rescue organization that we got him from had his mom too and thought that, since she was a small Australian Shepherd, he would be small too...no more than 40 pounds. Well, they were wrong! Today, he is about 60 pounds and continuing to grow a bit. Luckily though, he is a sweetheart. The kids LOVE him and he LOVES them. Max is almost always our earliest riser so, every morning, Spud cuddles right up to him. They spend a half hour or so just sitting with each other, loving on each other. There is quite a bond there, to say the least. Spud is also excellent with Alex and Ellee. Alex loves to sit and pet him and talk to him and, of course, Spud eats that up! Ellee likes to sit ON him and pet him and, being the kid-friendly dog that he is, that doesn't bug Spud a bit. He is definitely fully engrained in the fam and much loved. He still has PLENTY of work to do on the obedience front but, I'll get to that one day! :)

Things around here remain positive and happy! We are ready to celebrate this journey that we have all been on with Max and to show him what an amazing kid he is. We know this weekend will be full of smiles, laughter, joy and love and that it will again create happy memories for Max and our entire family. We are really looking forward to seeing you all at the park and Ollie's!

One more thing...if you have a Max shirt from the walk in October, wear it! We thought it would be fun for him to see all the people walking around in them at the park!

See you soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +401: Milestones

2010-05-07T14:55:00.008-04:00

It's day +401 for Max...just passed the day +400 milestone! He continues to do wonderfully. We have had a busy week, full of milestones so, I wanted to share them with all of you loyal and loving supporters.

Monday evening, Max, Alex, my brother Patrick and I got to attend the Reds game with Matt's company's tickets. We had a fabulous time! The seats were in the front row of the second level so they had a perfect view of the field and it was an absolutely beautiful evening. We also got free food and soft drinks with the tickets so, we all enjoyed some good ballpark munchies. Overall, it was awesome. Just so much fun to be able to go to a ball game and enjoy a perfect spring evening together. Thanks DJJ! Definitely a milestone passed to be able to go to a game, just because we can, without major worries.

I wanted to share the Reds game with you all because it was so enjoyable but, I am really writing today to tell you about a major milestone that we passed this week. On Wednesday morning, Max returned to school for a few hours! I took him and stayed with him the whole time as he asked me to and the teacher and counselor up at school agreed that it was a good idea the first few times. He LOVED being back! I don't think the smile ever left his face. He got quite the celebrity treatment from the class and really the entire school. He was surrounded on the playground and reconnected with a lot of kids that he knew from Kindergarten and 1st grade but, hasn't seen in over 18 months! Overall, he really, really enjoyed being back. We are going to keep his visits going for several mornings this month for about 2 1/2 hours each. He is already planning on going back on Monday, per his request, and Wednesday next week. I'm planning to stay with him again on Monday and then hopefully lessen the amount of time I am there each time after that until he can do it without me at all this month. I think we ALL feel better that I am there initially. I could tell that his teacher was a bit nervous and the other teachers and counselor as well. I think we all need some re-adjustment time!

As we talked about school on Tuesday evening, I told Max that he should pick out the clothes he wanted to wear for his big first day back that night. He agreed and then said, "I wish I had a shirt that said MILESTONE on it." So cute. At 8, he realizes how important and significant these times are in his life as much as the rest of us do.

Having Max return to school, even just for a few hours a week, is an enormous milestone, as you all understand. I was more emotional on Tuesday evening than I have been in awhile. To be honest, I was filled with mixed emotion. I am so thrilled that he is well enough to return to school and be with his friends again and yet, I am scared. His health remains fragile and although it is a good time of year to return to school and he does have a functioning immune system, if the wrong germ came his way, it could still be difficult for him. Even more than that, however, I realized on Tuesday evening what a huge adjustment this is going to be for me again. I have been lucky to have him with me, essentially 24 x 7 since this journey began and letting him out of my sight for long periods of time is going to be frightening. To top things off, thinking of our friends, the Akins and their tremendous loss again this week has made me never want to let go of my little ones! The time that I have had with all three of them here at home this past 18 months, as tough as it has been at times, has been precious. I already know, as I've said before, that I will treasure it forever. I know I have to let go a bit again and I am ready to do that. I just realized on Tuesday that it's going to be a bit harder than I thought!

Part of my increased nervousness this week is also due to some annual testing that is coming up for Max next week and the week after. Each year now, post-transplant, Max will have a series of tests run on several of his major body systems to see where things stand - his heart, lungs, bones, eyes and endocrine system. We have long days at the hospital planned for next Thursday and Friday and the following Friday to get all of the required tests completed, along with his regular monthly check-up with Dr. Davies and medication infusions. He is doing wonderfully and, as a result, I feel confident that all of the results will be good. With that said, it still makes us nervous. I don't know if there will ever be a test or doctor's appointment in Max's future where we will not be nervous, unfortunately. It just goes with the territory now. I'm not sure when we will have the results from all of this testing but, promise to keep you all posted as we know. All thoughts and prayers for good results are appreciated, as always.

The blood/marrow drive this weekend is shaping up to be a great success. Thanks to all of you that have volunteered to donate blood. We can also accomodate walk-ins so, if you have not made an appointment but would like to donate blood tomorrow, please come on up! I am sure that we will infuse Hoxworth with lots of healthy red cells to help untold numbers of needy patients. We hope to get several new people on the National Bone Marrow Donor registry too. What a wonderful day it will be when someone we know gets called to be a donor! My mom and I have a delicious Mother's Day lunch planned from Max's Meals for the inpatient families of A5 on Sunday too. We are looking forward to bringing a little comfort to the Hem/Oc and BMT mom's stuck at the hospital this Mother's Day.

Thanks for your continued support, love and prayers for all of us and our extended BMT family. More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +397: Blood/Marrow Drive Update

2010-05-03T13:58:00.005-04:00

It's day +397 for Max and he continues to do well. He is currently enjoying some fun play time with his cousin, Ben while Alex is at school and Ellee is napping.

I am writing today to be sure that everyone is aware of the blood and bone marrow drive that we are holding this Saturday, May 8th at our church, Lutheran Church of the Resurrection from 9 am - 3 pm. We are holding the drive in honor of Max's one year post-transplant anniversary and Hoxworth has titled it "Max Meyer's Big Give Blood Drive", as you can see on the flyer at the following link: https://acrobat.com/#d=vRiUP8cx1aQMSfGUw8DxsQ. It is one of the ways that we are hoping to give back somewhat for the miracle that we have witnessed in Max's life.

So far we only have a few people signed up to donate blood and Monica and I are concerned and feeling disappointed. Last year she had more turn out than Hoxworth could handle so, we planned for lots of slots this year and so far the response has been minimal. We would just ask that you consider giving the gift of life to a stranger through a blood donation. Max received 25 blood and platelet transfusions last year through his battle with Aplastic Anemia and he would not have survived without them. The picture above is from one day last year when he was getting a blood and platelet transfusion (you can see it coming down the lines to the left of him into his IV which is covered by his blankets). Everyday, Hoxworth needs 350 whole blood donors and 40 platelet donors to meet the needs of patients here in the greater Cincinnati area. Sixty percent of the adult population in the US is eligible to donate but only 5 percent do!

If you are interested in donating on Saturday, please contact Monica McGrew at mmmcgrew@yahoo.com or 513-231-6768. Additionally, if you are not signed up for the National Bone Marrow Donor Registry yet and would like to sign up on Saturday, you can stop by the church anytime during the drive to pick up a kit and get registered. It just involves a simple swab of your cheek (ie no needles required to get on the registry).

We know first hand how important and life-saving your donation of blood and/or bone marrow can be. Max would not be here today without the kindness of many, many anonymous blood donors.

Hope to see you on Saturday!

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +396: Return to Reality

2010-05-02T09:58:00.002-04:00

It's day +396 for Max and he continues to do very well. We are all enjoying our return to reality here at home in Cincinnati. The kids have loved having their "stuff" back and their friends around. At their ages, they really miss those things when they are away. Ellee immediately got out all her babies and purses, etc. upon our return home on Thursday and has played with them and her books non-stop. Alex and Max have spent as much time as possible jumping on the new trampoline, although we've had a lot of rain the past few days. They have also enjoyed playing with their neighborhood buddies and their cousins. Overall, we are all feeling a sense of new-found freedom again from the trip and happy to be returning to the real world more and more each day.

Unfortunately, with our return to reality, we received some harsh news about the reality of the BMT world we have been living in, once again. A family that we have told you about before, the Akin family, that we grew to know and love through our BMT journey, lost their second son, Matthew, to complications of his bone marrow transplant yesterday. Their other son, Andrew, passed away from complications of his third bone marrow transplant in the fall. To say the least, this family has been through hell. We are heartbroken for them and having a very hard time understanding how this can happen. Their parents, Kristin and Justin, are remarkably strong and intelligent people and have helped untold BMT families to understand what they are going through and find ways to deal with it, etc. Matt and I think about them constantly. We cry for them, as do our extended families. It is just not something that anyone should have to endure. Both of their boys had HLH, a rare blood disesase. To learn more about HLH, you can visit www.histio.org.

One thing I have learned throughout this process is that cancer is a terrible, terrible disease and nearly every family in the world has been touched by it. As a result, it receives a lot of attention and funding and therefore, a lot of wonderful research is happening which is leading to life saving discoveries and treatments every day. Unfortunately, through this process, we have also learned that there are other horrible diseases...things like HLH, SCIDS, Aplastic Anemia, etc...diseases that are rare and thus, not well known or understood. The more we can promote awareness of these afflictions and help people to understand how awful they can be, the more support we can garner for research and life saving treatments.

We just ask today that you think of the Akin family and keep all of them in your prayers. We know that Kristin and Justin will be carried through by their faith and the thoughts of their boys reunited in heaven. Their horrific situation is a reminder of our immense blessings. We are certainly hugging all three of our little ones even tighter today.

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +393: One Fantastic Vacation

2010-04-29T14:59:00.029-04:00

It's day +393 for Max and we have been back home here in Cincy for just about 24 hours now. We had an absolutely fantastic, memorable vacation. We have over 400 pictures and videos of all of our adventures to share with everyone so, I have posted them to Snapfish and put a link to the right of this post on the blog if you are interested in checking them out. I have included a few of my favorite pictures from the 11 days of fun in this post as well.

I could go into volumes of detail about everything we did but, that would equal the enormous amount of video and photo footage that I have and no one would be able to read it all! So, instead, I'll just cover the highlights:

Give Kids the World Village - an AMAZING, enchanted place filled with things kids love. They have a free putt-putt course, train rides, boats you can drive in a little pond, a sweet basketball court (as the boys put it), a beautiful carousel, free ice cream from dawn til dark (open from 7:30 am til 9:30 pm - yes we did have ice cream for breakfast a few times), a golf cart that delivers breakfast goodies and cookies to your doorstep if you want them, presents secretly delivered to your villa each day, etc. In addition, they have numerous activities and entertainment for the kids each day and evening. We enjoyed visits with Spongebob and Mickey & Minnie, horseback riding, a Winter Wonderland parade and a game show, all at the village. What makes this place the most amazing, however, is that it is almost entirely staffed by volunteers! They have about 140 people that work for the village and over 6000 volunteers that help keep the place running. It was truly a magical place to stay.

Disney - we spent three days visiting three of Disney's fabulous parks - Magic Kingdom, Epcot and Hollywood Studios. The boys favorite ride by far was Test Track in Epcot (a ride created by GM where you become the test dummies in a car they are getting ready to sell). Disney treated Max very well. They gave him a special pass which enabled us to get onto rides as quickly as possible, generally without waiting in line more than about 10 minutes, tops. Because of this pass, Max and Alex rode Test Track 12 times with either Matt or I! You could never accomplish that without this special pass in just 3 days! Most people wait for about an hour to ride it one time! Thus, Max felt very special. We also greatly enjoyed many other things at Disney including Space Mountain, the Tower of Terror, Thunder Mountain Railroad, multiple parades, Ellee and Alex's visit with three princesses, the Country Bear Jamboree, the Stunt Show at Hollywood Studios, etc. We all agreed that Disney is really a top notch place. They just do everything so well and make it really a magical experience for everyone. Matt and I enjoyed our visit as much as the kids did and we all can't wait to go back some day in the future.

Sea World - this is not the park of my childhood! I was quite impressed, to say the least. We went to a dolphin show, a walrus show and the Shamu show during our one day at Sea World and we LOVED it! We thought we would have a quieter day at this park so, we sandwiched it in between our Disney days but, we were quite surprised at how much there was to see and do at Sea World. We could have spent three days there! The shows are really impressive these days. I remember them from when I was a kid and they were great then too but, now they are just amazing. The animals do tricks that are incredible and everything is choreographed to music and other imagery. They were highly entertaining and enjoyable. Sea World also has tons of rides and other animal exhibits too. We only had time for one ride, a combo water flume/rollercoaster called Journey to Atlantis. Max loved it and would have gone on it 12 times if we had time to do it!

Marco Island - we spent the last 5 days of our trip visiting my Grandma in Marco. It was so relaxing and such great quality time with her. She turned 90 in February and is truly a remarkable person. She still lives on her own in a gorgeous home right on a waterway on the island. She drives herself around and is essentially totally independent. Matt and I said to each other several times that, while we have always known that my grandma was an exceptional person, we just could not get over how fabulously she is still doing, at the ripe old age of 90! We enjoyed lots of time with her watching the boys swim in her pool and just visiting. It was a blessing to have that time with her. She really got to know all of the kids again and they got to know her. Before the visit was over, all three of them were hugging her and snuggling with her...even Max, who is our generally non-affectionate family member! The time we spent in Marco was precious. After a tiring, fun-filled 6 days in Orlando, we were thrilled to have some relaxing downtime in Marco with grandma. We also got to visit the beach a few times while we were there, took a boat ride with my Uncle Tom that lives near-by and had a couple of great seafood meals out on the town.

As you can see, our trip was beyond wonderful. We are so grateful to Make A Wish for giving us this very memorable experience. I said to my parents and Matt's mom last night that I felt like we had left as a paranoid, scared family and come home feeling much more normal and ready to re-enter the real world. The trip definitely threw us right back into reality - being in crowded airports and airplanes with Max and then being at Disney World with thousands of people from all over the world. It was a far cry from the quiet life we have been living here at home the past 16 months! I think the trip really got us out of our comfort zone and made us realize that things are going to be ok back in the real world again. We have definitely been baby stepping our way back to full reality for the past few months but, I'm not sure we would have taken the plunge all the way back in without this trip. It was so good for us to get out there again and have a really fun time together. We felt a lot like our old selves on this trip, the five of us together, just having fun, laughing and enjoying life...not thinking about Max's health or what the future might bring. It was much needed and very invigorating. I think we have definitely come back changed, once again and much more ready for our return to reality as a family!

We are busy here at home preparing for this month's continued celebrations. Our blood and marrow drive next week still has lots of openings so, please consider joining us for a donation if you can! Max's Meals is working up our menu for Mother's Day lunch next Sunday. We are also working on the preparations for our giant celebration on May 22nd at Beech Acres and Max's Bash at Ollie's the next morning. We are looking forward to seeing many of you there and enjoying some fun together.

Several of the friends that we met along our journey with Max are continuing to struggle with complications from their bone marrow transplants. We ask your continued prayers especially for Matthew Akin, Brayton Martin and Ethan Alfred and their families at this time. Their difficult journeys continue to remind us how exceedingly blessed we have been with Max's progress to date. We feel helpless when it comes to easing their struggles but, know that all of them appreciate the thoughts and prayers of others, even those they don't know.

We are eternally grateful to Make A Wish and all of the volunteers that made our trip happen, especially the Olsen family who worked extra diligently to raise the funds for Max's trip. They have placed precious, fun memories in all of our heads that I know we will cherish for the rest of our lives. We also believe that when Max looks back on this challenging time in his life, this Make A Wish trip will be at the forefront of his thoughts - exactly why we wanted to give him this opportunity. Thank you to all of you that have ever supported Make A Wish in your lifetime - you are making a huge difference to families like ours!

More soon...enjoy the pictures and videos!

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Wish Granted! Hospital Updates! Max365 Challenge!

2010-04-17T09:28:00.005-04:00

Hi all,

This is Aunt Sarah writing for Kristi. She wanted to do an update before they left for Disney, but several events yesterday prohibited her from do so. But we have great news to share!

First, the Meyer's are at Disney! Thanks to the Make-A-Wish Foundation and a local family who helped grant Max's wish, they are hanging with Mickey all week! They are all extremely excited to see Disney and do normal family things together! They woke up at 4:30 this morning, but to their delight, they were picked up by a limo and taken to the airport! Hopefully, we'll have updates as soon as they get back.

Second, after being up all night Thursday with Max getting sick, Kristi and Max headed to the day hospital for their regular treatment, not sure what Dr. Davies would say about Disney since Max was sick. Much to their delight, she said all systems were a go! Max got several IVs of fluids and his IVIG treatment so he is all set. Dr. Davies gave them more great news yesterday! Essentially Max is at a point where he is being minimally immune suppressed with the Cyclosporine (they are doing this so that Ellee's cells will win the fight against his) so, immune-wise, he is similar to a child that has had an organ transplant. Organ transplant recipients are on Cyclosporine for some time, sometimes the rest of their lives at a dose similar to Max's and function largely as normal children. Great news! He can pretty much do everything with cautions (handwashing, wiping down surfaces, etc.) other than swim in a public pool. Great news! Other than hanging out at the swim club, it looks like this summer will be pretty close to normal!

Thirdly, we wanted to share a website with you and invite you to take the max365 challenge! Ryan and I put together this site, www.max365.org, to celebrate Max's 365 day post-transplant. Our goal is to get 365 pledges to help give others a positive outcome from severe aplastic anemia and other blood diseases. Pledge to either give blood, register for the National Bone Marrow Registry, volunteer at CCHMC or the Ronald McDonald house or donate to Dr. Davies research, Make-A-Wish or Max's meals! By choosing to pledge something, you can help others like Max have a positive outcome. There are so many ways to help make a difference so thanks to all of you that have helped over this past year and thanks in advance to those of you who choose to help now too! We appreciate it so much!

Also, check out this great article about Max's Meals and the blood and bone marrow registry drive Kristi and Aunt Monica are having!

Day +374: Enjoying Life...Ready to Celebrate!

2010-04-10T13:22:00.013-04:00

It's day +374 and we have been BUSY!! Good busy, thank God! It seems like Aunt Sarah and Uncle Ryan's wedding was really a turning point for us. We had a BALL celebrating day +365 with our families here at home. I made a special video overview of Max's nearly 16 month journey which we all watched together...even the kids. We all were teary eyed throughout much of it, just witnessing the struggle he went through and then the miracle that has unfolded before our eyes but, it was great to revisit the past 16 months, all the ups and downs together and realize how much we have been through as a family and how far Maxer has come. We also had lots of fun and laughter. We played a few "365" basketball contests and threw 365 poppers on the driveway together. Max loved it, as always.

Easter was fabulous too. I started off bright and early with the sunrise service at church so that I could head down to the hospital with my parents to serve Easter brunch to the families on A5. It was quite a moving experience, once again. We were inpatient last Easter so, it was even more meaningful to me this time to be able to provide this meal to the families. Several kids (ie patients) that were allowed, came in with their families to get some food which was wonderful but, made things more tough for me, honestly. To see them with all their pumps hooked up to their central lines and the paleness of their faces brought back lots of tough memories. But, there were smiles on their faces as they enjoyed a delicious catered meal of scrambled eggs, ham, hashbrowns, sausages, fruit and home baked breads. Every scrap of food was gone by the time the two hours was over. It was thoroughly enjoyed by all and definitely made me feel that what I am trying to do with Max's Meals is important. I KNOW that we have brightened days for numerous families down there with the three meals we have provided so far and that they are so appreciated. I hear it over and over again each time we do this. Thank you, again, to those of you that have supported Max's Meals so far and please consider a donation at anytime to help keep these meals coming! We are already planning to bring both Mother's Day and Father's Day meals to A5.

We really enjoyed the rest of Easter this year too. We were able to attend Matt's mom's families Easter celebration, which we obviously couldn't do last year. It was wonderful to see all the extended family there and celebrate Max's progress to date. We also enjoyed the evening at my parents house with my sister and her family. I got to cuddle quite a bit with Baby Carter and Ellee was enthraled with watching Kim nurse him. Overall, Easter was fabulous.

We got a new addition to our backyard last weekend too. We bought a used trampoline (a really nice one with a basketball hoop and everything) from some people that were looking to get rid of it, as their kids had outgrown it. When we found out that Max wouldn't be able to go to the swimming pool this summer, we decided that we wouldn't renew our swim club membership again this year and told the kids we could use some of the money to get something else that they could enjoy around here this summer. They decided on a trampoline and we were looking for one when we found out that this one was available. Matt had quite a time moving the thing over here as it is 14 feet in diameter and a double trampoline! But, it has been well worth it - the kids LOVE it! You can see them bouncing away with their cousins the other day (Reds opening day here in Cincy, thus their matching t-shirts).

This week was very busy with jumping on the trampoline and planning of several different upcoming celebrations. Hopefully most of you received the Evite for the celebration on Saturday, May 22nd at Beech Acres. If you didn't, I apologize...but, we would still love to have you attend! Just go to the following link and let us know you are coming so that we can plan for the food, etc: http://www.evite.com/pages/invite/viewInvite.jsp?inviteId=POKLPCTZBBDUIQQHNQHX We are thrilled that we have come to this point in Max's healing process and so look forward to seeing all of you and being able to thank you for all of the love and support you have shown us throughout this journey. We plan to share the video of Max's journey that I talked about above at this party and have lots of food and drinks for everyone as we enjoy the park too!

Max is also having a special celebration the next morning, May 23rd, at Ollie's Skatepark in Northern Kentucky. We have reserved the entire skatepark for two hours of private skating time for he and his friends! He asked to do this way back when he was in the initial phases of his diagnosis and treatment and we promised that we would make it happen, as soon as he was able to do it! We are working on some special transportation for him to the event - will let you know more about exactly what as we finalize things. I am sure he will be out there bunny hopping and zooming up and down the ramps with one HUGE smile across his face - back in his element!

Monica and I are also busy getting ready for the blood and bone marrow drive on Saturday, May 8th in honor of Max's one year post-transplant anniversary. It will be from 9 am - 3 pm that day at our church, Lutheran Church of the Resurrection. Please consider coming out to donate blood or registering to be a bone marrow donor! Let me know if you would like to donate blood so that we can get you on the schedule. You can stop by anytime that day to register to be a National Bone Marrow Donor.

Tomorrow afternoon, Monica's mother-in-law, Wynne McGrew, is treating Max, Alex, my mom and I and all the Meyer cousins and moms to tickets to Mary Poppins, the musical. She planned it in celebration of Max's progress and we are all excited to enjoy the show together! It will be a first for Max and Alex as they have never been to a live show like this at Aronoff before. I'm sure they will be awed and impressed.

Finally, we are gearing up for our GIANT family celebration that begins next Saturday morning, bright and early! All 5 of us will be picked up by a Make A Wish car at about 5:00 am to head to the airport for our flight to Orlando! We'll be in Orlando by about 9:15 am and will have the day to settle in at the Give Kids the World Village where we will stay with Make A Wish. That evening we will receive tickets to Disney, Universal and Sea World that we can use as we wish throughout the next six days! We have already begun checking out all that there is to do at these three parks so that we have some plans when we get to them and can see the things the kids most want to see. It's surely going to be a fun and exciting adventure in Orlando! We have been told that the Give Kids the World Village is incredible in and of itself. It looks like Candy Land brought to life and they have daily/nightly activities right on site including Disney character visits, horseback riding, a Winter Wonderland parade with Santa and SNOW, etc! I think I will probably need an entirely separate blog just to tell everybody about all our adventures and show you all the pictures after we get back!

After our six days in Orlando, we are heading down for a five day visit with my grandma in Marco Island. We haven't seen her in over two years and she just celebrated her 90th birthday in February so, we are greatly looking forward to spending some time with her. We have very much missed seeing her and can't wait to relax with her at her house and spend some time in her pool and at the beach. I'm sure it will provide us with some much needed recovery time after our whirlwind trip to Orlando!

As you can see, we are ENJOYING life!!! We are busy, as I said but, we are loving the busyness again! I cannot express how amazing it feels to be able to do things together, as a family! Just last night, we had some good friends over for a cookout here and the kids had a ball just running around together. We all said many times how much it felt like old times and how long it seemed since we had been able to have fun together like that. It was so great! This morning, I got to take all three kids out for a special shopping trip to GameStop (the boys favorite video game store) to spend their Easter money and then we all went to lunch together at Skyline while Matt got some things done around here. We all so enjoyed just sitting together at a restaurant again, having lunch.

Max's progress to date is truly a miracle. We are beyond grateful for the many, many blessings that have brought him to this point. While the road ahead is still uncertain and our heads are often filled with worry about Maxer, we have learned that we need to live in the moment, making the most of every second we are given together, enjoying life to the fullest and trusting that things will be alright.

We head down to the hospital next Friday morning for our regular monthly visit and medication infusions. I'll try to post a quick update on things with Max before we leave for the big trip on Saturday. I can tell you that I am anxious to talk to Dr. Davies and be sure that she is certain this trip is safe for Max! She has already told me several times that she approves of it and has signed all the necessary Make A Wish paperwork but, I just need her reassurance one more time! As Matt told me last night, we are never going to stop worrying about Max! NEVER!

Thank you for your continued thoughts, prayers, love and support. Hope to celebrate with all of you in May! More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +364: +365 Eve!!!

2010-03-31T14:40:00.004-04:00

It's day +364 for Max...or, the eve of day +365...one year post-transplant! Wow! In some senses, it's hard to believe it's been that long but, in another sense, it seems like forever that we've been living this "new life". Max is doing very well. We enjoyed a fabulous weekend celebrating Aunt Sarah and Uncle Ryan's wedding and have been catching up on rest the past few days. The wedding was absolutely beautiful and perfect. The kids all did an outstanding job in the wedding and had a ball celebrating at the reception. I don't think it could have gone any better, in my mind. Sarah & Ryan did a wonderful job planning everything and it made for a great celebration of their union. There are tons of great pictures loaded up to the following site: http://gallery.me.com/ryanmcgo and a super fun video of a dance the boys did to honor Sarah & Ryan at the following You Tube link: http://www.youtube.com/user/kmmaemeyer?feature=mhw4#p/a/u/0/ntBqIxCibZk Hope you enjoy them all! We certainly enjoyed celebrating together as a family.

As for tomorrow, we have some more fun planned for the family. I have made a special video of Max's journey the past 15+ months and we have some "365" games planned. I'm sure it will be an emotional and fun celebration for all of us.

We are definitely counting our blessings as we reach day +365 tomorrow with Max. It has been quite a miraculous journey so far and we pray every day that it continues to go as well for him as it has thus far. We know the road ahead may still be bumpy and that things will probably never be as they once were for all of us but, we are grateful for what we have learned on this journey so far and know that it will forever shape and enhance all of our lives.

I'm going to keep things short today - LOTS to do to get ready to celebrate tomorrow! I promise to write again soon and fill you all in on the fun around here. Also, I'm finalizing dates for the bigger parties to celebrate Max's progress this summer with all of you so, be sure to check back soon. We would LOVE to see all of you and have the chance to thank you for all your continued support and love.

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +355: All Is Well

2010-03-22T16:06:00.006-04:00

It's day +355 for Max and all is well at the Meyer house! I apologize that it's been so long since I've updated again...hopefully you all knew that "no news is good news" around here! Things have actually been going so well for Matt and Max these past few days that we have just been busy enjoying some beautiful Cincinnati spring weather. We spent a good portion of every day from last Thursday until yesterday, outside watching Max and Alex zoom around on their scooters and shoot hoops with their buddies. It felt soooooo good! Things are really getting back to "normal" more and more each day.

Matt's surgery went very well last Tuesday. There were no complications with the gallbladder removal at all and he did well with the anesthesia. His recovery has been great too. He was definitely sore and tired for a few days but really began to perk up last Friday and get around much more easily. He and the boys enjoyed cheering the Xavier Muskies on to victory on Thursday and Sunday and have loved the basketball tournament so far. It was perfect timing for Matt to have to take it easy and take in ALL the games!

Max had another fabulous appointment down at Children's last Friday. Dr. Davies continues to think he is progressing well and even gave him permission to play in a summer basketball league, to which Max once again did the happy dance in the bed! The biggest item that the team stressed to us is the importance of continued safety in the sun, especially this summer and in Florida. This is due to the risk of graft vs. host being triggered by a sun burn. As a result, we need to keep sun block on him whenever he is in the sun, avoid the hours of 10 til 2 this summer and have him wear a hat and sunglasses to protect his face and eyes. He will also need a long sleeve swim shirt with sunblock in it and a hat for swimming, which he can only do in a private pool. We did ask about swimming in the ocean and Dr. Davies was ok with it, as long as Max showered off after getting out. All great news! Max got his usual IV infusion of IVIG and his inhaled pentamidine to protect him from pneumonia and handled it all like a champ. The nurse even gave him a certificate that said "Thanks for being a Rock Star today!" He was very proud.

I discussed the engraftment situation with Dr. Davies also and, in her typical style, she reassured me that I should not worry. She said that it will tend to go up and down and that she is in no hurry, as a result, to wean Max from the Cyclosporine. Her exact words were, "it's buying us time to be sure Ellee wins." In other words, the Cyclosporine is allowing Ellee's marrow to continue to grow and proliferate inside Max's bones so that when all immune suppression is removed, her marrow will take over and be the producer of Max's blood cells and immune system (and not the small bit of Max's marrow that remains).

They had not yet decided by the end of the appointment about Max's future monthly visits and what would be done going forward. They wanted to wait to see the results of some of the blood tests that were drawn before deciding. They also decided to wait another month to draw extra blood for immune system studies again, to see exactly where his own immune system stands at the nearly one-year post transplant mark. So, for now we are planning on heading down again on April 16th for a regular monthly visit and medications. We'll be patient, as usual, to see when that may change in the future. They also mentioned at the end of the appointment that Max will need a few other tests that they typically run at the one year post transplant mark so, we will probably be heading down for those soon too (they mentioned an EKG and some thyroid studies, etc). Overall, his appointment was great again and his progress remains "on track".

With all this good news, you can imagine how we are feeling - elated! We truly feel like we are turning the corner as a family. Matt's issues should be behind him soon and Max is really getting there, more and more all the time. We are beginning to regularly enjoy really fun things in life together again and we cannot express how wonderful that feels. It is really something just to see Max scootering up and down the streets here in the neighborhood with his brother and buddies, just doing what an 8 year old does! Not only do Matt and I find tears welling up in our eyes every now and then, just watching them but, many of our neighbors and family members have told us that they do too. It really has been amazing to see this miracle unfold before our eyes. To think of where we were only a year ago and how far Max has come already - truly inspiring!

On that note, we are planning lots of celebrations near the one-year post transplant mark. We have a date set for the blood and bone marrow drive so, please plan to join us to donate blood or sign up to be a bone marrow donor on Saturday, May 8th. More details to follow soon. We are also planning a special family celebration for the evening of Thursday, April 1st, the actual one year anniversary of Ellee's life saving gift to Max. I am sure that will be a special and fun celebration. We have two other celebrations in the works that we will tell you all about soon. We hope to see lots of you this summer and toast to Max's return to health!

We are all so excited to spend this weekend celebrating Aunt Sarah and Uncle Ryan's marriage. It seems hard to believe that it is already here - it felt so far away for so long and now, it is just 5 days away! We are thrilled to be a part of their special day and look forward to creating many fun memories this weekend. I promise lots of pictures next week! The boys are going to look so handsome in their little suits and Ellee, so beautiful in her little dress. I know it will be a one-of-a kind photo op, as well as a very emotional day for all of us. Such joy to celebrate!

We wanted to share the following link with you all too, one that Max is particularly fond of, due to his passion for the NBA: http://www.youtube.com/watch?v=IJ2RsJFGtNQ Just another reminder about how easy it is to make a BIG difference in someone's life! We were beyond blessed to have Ellee as a perfect match for Max but, as you know, we have met so many families that were not as lucky. YOU can be the difference for someone else. Please consider registering today if you haven't already.

Things are definitely turning for the better around the Meyer household and we could not feel more blessed. Thank you for your continued support, love, thoughts and prayers. More soon....

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +349: Sunshine, Surgery & Snuggles

2010-03-15T13:54:00.012-04:00

It's day +349 for Max and all is well. Max continues to do well and gain more and more energy everyday. I can tell that he is feeling better and better because he is more and more bored around here! The two definitely go hand in hand...the better he is feeling, the more trouble he tends to get in! Always a good thing, though, to have him feeling more like himself all the time, even if he is more mischieveous.

We head down to the Day Hospital on Friday morning for his regular monthly visit and medication infusions. The last time we were there for our regular visit, we talked about the possibility of March being the last time that Max would have to get the two meds (one IV and the other through a breathing treatment) that he has been getting each month. That would obviously be wonderful as it would mean that Max would not have to get an IV at these monthly visits! They would still want blood samples to check his levels, etc but, not having to have an IV would be fantastic! We'll be sure to update sometime after the visit to let you know if that will be the case going forward for Maxer.

The kids and I have been enjoying every minute of the warmer spring weather we have begun having here in Cincy. The pictures at the top of the post were taken last week when it got up into the 60s for a few days. The boys are up to their old tricks outside - ramping with their buddies Jack and Joey from up the street. It's so great to see them doing this again and enjoying fun with kids their ages! Ellee loved the nice weather too and had a little picnic on her blanket while she watched the boys scootering.

Beyond that, we are gearing up around here for Matt to have his gallbladder removed tomorrow. His surgery will be at 7:30 am tomorrow morning so, he and I will be heading to yet another hospital tomorrow at 6:00 am. If all goes smoothly, which I'm sure it will, we should be home here tomorrow afternoon - it is an outpatient surgery. Matt will be sore and tired for a few days at least and will be off of work for a week. But, we are both glad to be getting rid of the problem in his gut and hope that this surgery will eliminate future GI issues for him. We are holding our breath that things will go smoothly as Matt needs to be healed up enough for his sister Sarah's wedding in just 12 days from now! The doc assured him that he would be so, we are trusting and keeping the faith that he'll be ready.

We had a real bright spot shine into our lives last Friday morning... my sister, Kim, had a baby boy, Carter Douglas! He wasn't expected until this Friday (the 19th) when she had a c-section scheduled but, he was ready last Friday and is a healthy little guy. I got to go down to the hospital on Saturday morning to meet him and visit with my sister and her husband for awhile. It was such a joy to hold a teeny baby again and to just relish in the miracle of life. I enjoyed just snuggling with him, smelling him and watching his precious expressions. I said to Kim at one point that it is just amazing to realize that this little tiny thing is a human! We are thrilled to have the opportunity to enjoy a newborn again with my sister and her family and look forward to seeing him again soon. The kids can't wait to meet Cousin Carter either!

That's it for today...going to keep it short and sweet. I'll post more tomorrow or Wednesday to let you all know how Matt is doing. Thanks for your continued thoughts, prayers, love and support.

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +343: Looking Back...Moving Forward

2010-03-10T14:32:00.004-05:00

It's day +343 for Maxer and he continues to do well. Our trip to Cleveland was great. We were so happy to be able to be there for Uncle Tom's service. It was beautiful and a fabulous tribute to a wonderful man. He will be sorely missed. His entire family was touched by Max's presence and each one of them told us how much Tom thought of Max and cared about him. We were so happy that we made the trip. We arrived back here on Sunday night exhausted. Max, Alex, Ellee and I haven't been away from home, other than to the hospital, in almost 15 months. I was quite surprised how tired I was from the trip. I used to be able to handle a weekend away like it was nothing. But, I think the months of little to no sleep and all the emotion of everything has built up in me and I just can't handle as much as I used to. I realize how comfortable we have all become with our quiet, simpler life these days. Sometimes I worry more about our transition back to reality than anything!

Max had a bit of a melt down on Saturday after the memorial service for Tom and the family party. He was tired and overwhelmed by everything, I think, and he just needed some down time. So, we headed back to my Aunt Laurie's house and had him rest for awhile and drink a bunch of fluids. Once he calmed down, he was ready to go again and enjoyed visiting with my Aunt and her family and playing with Papi, Mama and Uncle Patrick. It was an eye opening trip, however, and I was very glad we had the chance to get away from home for a weekend too to see that being away from home is ALOT for Max still. We rethought our planned trip to Disney at the end of April and have decided that the only way we are going to make it is if we take it really slowly and build in lots of down time.

The last day or so have been somewhat momentous and emotional for us as yesterday, March 9th, marks one year from the official start of Max's transplant journey. We checked into the Hem/Oc/BMT floor of Children's Hospital one year ago yesterday to begin Max's preparation for the bone marrow transplant from Ellee. One year ago today, Max got his first dose of chemotherapy to rid his body of his old marrow...a painful shot to his thigh. The memories of those days are difficult. We were so scared and full of worried anticipation, not knowing what to expect and what each day would bring for little Max. Looking back on them fills us with mixed emotions. We realize how far Max has come and how grateful we are for his healing...and yet, in an instant, those feelings of fear can come flooding back.

With these memories and emotions in mind, Matt and I and his mom got to do something last night that ended up to be very appropriate and impactful. We were invited to attend a donor event for the Cancer and Blood Diseases Institute at Children's where Dr. Davies and a patient's family spoke about their battles against leukemia. It was highly moving and inspirational. We were in the room with many of the doctors from the Cancer and Blood Diseases Institute that work every day to find better and better ways to battle blood diseases like leukemia and aplastic anemia. Dr. Davies did an incredible job giving an overview of what her research team is working on and the promise that it holds for so many sick children and their families. Then, the Rumping's, a family who's 2 year old daughter, Hannah, battled and beat leukemia through a bone marrow transplant, spoke about their journey. Listening to the Rumpings brought back more tough memories for Matt and I and yet, we left the event feeling extremely inspired and motivated. We cannot do enough to support the amazing institution that Cincinnati Children's Hospital is. There is no way to ever express our gratitude for the loving care that they provided to Max and for the life-saving miracles they performed for him. But, Matt and I are determined to do everything we can to show them how much it meant to us through our unceasing support and assistance. We have already begun to think about how to get Max's Mighty Mob even more gigantic and more financially impactful in 2010! We talked last night about how exciting this year will be with Max leading the Mob! All the doctors, nurses and development staff at Children's are excited to see him up there, marching along with a huge pack of supporters behind him! So, get ready for one heck of a Mob in October!

Upon returning home from this event last night and in my effort to get Easter Brunch lined up with Max's Meals, I have been thinking quite a bit about Max's Meals role in all this. I love that, with the support of many of you, we are able to provide a meal to the inpatient families on A5 on special occasions, just to brighten their tough times a bit. But, I don't want giving to Max's Meals to take away from giving to Children's Hospital. The real solution here is finding ways to prevent these families from ever having to be inpatient at Children's and that is what Dr. Davies and her team are hard at work on. Thus, the more funding for her efforts, the better. However, we know that her solutions will take time and, in the meantime, families are enduring very difficult times and need to know that there are people thinking of them. That's where Max's Meals helps. It's just a little ray of sunshine so that those family's know they are not forgotten and people do care and understand their struggles. What I'm trying to say is, thank you for your support of Max's Meals and I would love for it to continue...just don't do it in lieu of supporting Children's efforts. That is more important.

There is no way to ever thank a group of people for saving your son's life...that's what Dr. Davies and her team have done for our family. All we can do is be grateful to God for the many, many blessings that he has bestowed upon us and work to spread his love by caring for those less fortunate. We believe that one way we can do this is by partnering with Children's and sharing Max's miraculous story of healing, in an effort to inspire others to support this fabulous institution and their many life-saving efforts.

Thank you for your continued love and support. More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day + 337: Busy, busy, busy

2010-03-03T17:38:00.010-05:00

It's day +337 for Max and we have LOTS to blog about! It's been awhile since I have been able to write, largely because we have been busy...mostly good busy. Things have calmed down on the health front, thank goodness! Max has gotten rid of his cough and been feeling great lately. He looks good and has more and more energy all the time. His cheeks even seem to be getting a little bit of a pink glow back in them. He is definitely still more pale than usual but, continuing to make great progress. His engraftment continues to be a bit of a challenge but, nothing that Dr. Davies is too excited about at the moment (her words exactly). It dropped again last week to 83.3%, the lowest it has been since the transplant, and Matt and I were concerned. But, Dr. Davies and her team have reassured us and told us not to worry. They are watching it and have tweaked his cyclosporine dosage, in hopes that it will rebound, and are not overly concerned.

Matt is also feeling much better. Three days after he got out of the hospital he was back at work and he started running in the morning about two days after that. He remains on a strict low fat diet (nothing with more than 3 grams of fat per serving) and is planning to have his gallbladder removed in a few weeks to remove the root of the problem. We are so thankful that his gallbladder is the cause of his problems as that is a relatively easy fix and he should be done with any attacks after that is removed. The path he took to that diagnosis wasn't the easiest, to say the least but, we are just grateful that we know what caused his pain and that his issues will soon be resolved for good.

We have been enjoying more and more fun times around here, getting out just a little bit more, here and there. We felt like we were burned a bit with the RSV that Max picked up so easily, as soon as we began venturing out again but, we know that we have to start returning to normalcy, little by little. I think Matt and I would love to keep Max cocooned up at home as he has been for so long now, just to be safe but, we know that isn't fair to him or any of us and that the time has come to start dipping our toes back in. On that note, we did something last week that we haven't done as a family in over 13 months - we ALL went out to dinner together! We hit one of our favorite Cincinnati restaurants, LaRosa's Pizzeria and had a great time. Several of the pictures above are from that night. I explained things briefly to our waitress after we arrived as she caught me wiping down the table and booth with Clorox wipes (didn't want her to think I was a wacko) and she made things a bit extra special for us. She brought the kids a special dessert after they ate their pizza and they were thrilled. At one point during the evening, I looked across the booth at Max and he just smiled back at me and said, "wow, this is fun!" It sure was!

We have been very busy around here with school work primarily and with preparations for Aunt Sarah's wedding in just 23 days! Max got a bit behind with school from not feeling well with the RSV and then daddy being in the hospital (mommy couldn't help much with homework that week) so, we have been making up for some lost time. We just finished two reports today that he had to do (yes, he is in 2nd grade, believe it or not) on Thomas Edison and George Washington. He is doing a great job with his school work and has gotten himself right back on track with his 2nd grade class. Alex is continuing to enjoy school and is also learning a lot. It's amazing to me how fast my boys are growing up! Ellee too! She loves to sit and read books out loud to Spud or to anyone that will listen and colors like crazy these days. I am, once again, so grateful to have this time with my little ones to witness their daily growth and to have time to enjoy games and extra cuddles with them.

Matt and I got to enjoy some fun times as adults this past weekend as we attended the bachelor and bachelorette parties for Sarah and Ryan. The wedding is fast approaching and the whole family is so excited. We are looking forward to a really fun, memorable weekend, celebrating Sarah and Ryan's union. All three of the kids, as well as all of their cousins on Matt's side, are in the wedding, as are Matt and I. It is going to be an event to remember - lots of dancing and fun for all!

Despite all this positive, good news, the last few weeks have brought their share of sadness too. My Uncle Tom Bauman, my mom's brother, passed away on Monday from cancer. He had been battling it for the last few years and was doing an amazing job. Unfortunately, we had not been able to get up to Cleveland to see him in over a year due to Max's illness but, everytime we did see him, he was upbeat and happy - cracking jokes like crazy, in his typical style. He was an absolute inspiration for Matt, Max and I throughout Max's ordeal. Matt and I have become very big believers in Lance Armstrong's "Live Strong" motto and foundation and what it stands for. To us, Uncle Tom was the epitome of this philosophy. Cancer didn't have him - he had cancer. He didn't complain about it or let it control his life. He lived with it and made the best of every single day. He knew for quite some time that his cancer was terminal but, you would NEVER have known that to interact with him. He went about his life with a smile on his face and an optimistic attitude and everyone around him felt it. We are very, very saddened by his passing and only wish we had the opportunity to all visit with him one more time before he was gone. His wife, my Aunt Renee and I, have really forged a bond as a result of our shared care-giver experiences. We know what each other have endured - what it's like to love someone that is so sick. She has been a huge support for me throughout Max's journey and I want to return the favor to her now, at this tough time in her life. Thus, we are all heading up to Cleveland tomorrow to attend the service for Tom on Saturday. I talked with Max's medical team at Children's and they approved the trip. Renee and I have exchanged emails about it and we both know that it will be a real ray of hope for all of our extended family to see Max there. We also know that Tom will see Max there and know how much we cared for him.

In addition to this saddness, we learned last week that another one of the children who's family we came to know last year while Max was inpatient at Children's, also passed away. I saw his mom just before Christmas and he was doing well, they were even planning to head back home to the Toledo area shortly after that. We were surprised and very saddened to hear of his passing. It was yet another reminder of just how blessed we have been through this process. Max has done beyond well. As one of the nurses put it at his last visit to the hospital, "your son has just breezed through this process, you know that right?" To her comment, I replied, "oh, yes, we know. And it's still been incredibly difficult. I can't imagine what it is like for the families whose kids struggle, or even worse, don't make it through at all." Here are some sobering statistics for you, from our very own experience with the BMT world. Of the 8 families that we met while inpatient at Children's with kids going through bone marrow transplant, 5 did not make it through at all, 3 are STILL in the hospital (since we were there last April, one with their second child going through BMT) and the other one is still here in Cincinnati, waiting to finally get to return home. It is an extremely difficult process to endure.

Thus, my passion has been renewed, once again, for my mission with Max's Meals and my desire to pay back Children's for the miracle we have witnessed with Max. I firmly believe that we were brought through this process so well, with so many blessings, for a reason. I believe that God wanted to open our eyes to the incredible suffering that goes on down there at Children's on the fifth floor of A5 for a reason. I believe that I have been called to do something about it. So, I have been working hard to do as much as I can to continually help the families down on A5. I am doing a lot with Max's Meals and I am beginning to see that there is a lot of potential. Currently, we are working on lining up a caterer for Easter brunch and I am getting lots of great response from the caterers here in town. At the same time, I am starting to explore getting an official non-profit designation for Max's Meals and registering it as a non-profit business with the state of Ohio. That way, I can go after grant money and really begin to do more. In addition to Max's Meals, I am getting involved with a Parent Advisory Board for the Cancer and Blood Diseases Institute at Children's. It is a newly formed group, looking for advice from parents that have gone through experiences like we have so that they can improve things for the patients and their families even more.

On top of this, we are fast approaching the one year anniversary of Max's transplant and we are hoping to celebrate it in a number of different ways. Monica (Matt's sister) and I are working on a blood and bone marrow drive to be held in April in commemoration of Max & Ellee's anniversary. More to come soon on this as we have a date, location, etc. finalized - but, please start considering giving the gift of a blood donation or registering for the national bone marrow donor registry if you haven't already. I am also planning a special celebration for Max with his cousins and some of his friends. We promised long ago that we would rent out Ollie's, his favorite indoor skatepark, and take he and his cousins/friends down there in a Hummer limo to celebrate when he was able to get out like that. At this point, it is looking like we will be able to do that in May. I am going to double check with his doctor the next time we see her and then get it lined up. Of course, Max can't wait! Oh the things you promise when your child is facing chemo and a long hospital stay, not to mention months of isolation at home! :) We are also hoping to hold a larger celebration some time this spring or summer. We would love to get together with all of you to thank you for all your support and love and to enjoy some fun in celebration of Max's return to health! More to come on the big party soon too!

So, like I said, things are busy - but mostly good busy. We'll keep you posted as things progress, as always. Thank you for your continued support, love and prayers.

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +325: Under One Roof!

2010-02-19T21:19:00.003-05:00

A quick update on day +325 for Max (day +5 for Matt in the hospital)...Matt came home this afternoon and is doing well!!! The procedure to remove the stone this morning was a success, thanks to the anesthia and he was able to eat some solid foods for the first time in 5+ days so, the doctor let him come home! We are thrilled to be back together under one roof again and hope it stays this way until Max goes to college!

Max continues to do well too. He is still coughing, somewhat congested and a bit more tired than usual but, up to most of his usual tricks around here. ;)

Thanks, again for all your love and support. Our journey continues...more soon.

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +323: Progress

2010-02-18T14:24:00.003-05:00

It's day +323 for Max (day +4 in the hospital for Matt) and things are progressing for both of them, slowly but surely. It's been another long week with a few surprises, as usual but, we are beginning to see the light at the end of the tunnel for Matt and that really helps.

Max is doing well. He is still coughing a little bit here and there but, has no fevers and is running around like a wild-man, playing basketball everyday and generally up to his old tricks around here! You can tell pretty quickly when Max really isn't feeling well because he doesn't shoot hoops about once every 1/2 hour like he does on a normal day. Since about Monday afternoon, he has been back to regular rounds of dunking and horse with Alex!

Matt is still in the hospital. They have found a gallstone in the duct outside the gallbladder that is causing digestive juices to back up and inflame both the liver and the pancreas. They tried a procedure under "conscious sedation" on Tuesday afternoon to remove the stone and, unfortunately, it did not go well. Matt ended up not breathing for a bit as a result of the medication that they were using to sedate him and they had to stop the procedure and reverse the medications to get him breathing again. Just a little scary, to say the least! His dad and I were waiting outside the procedure area for his doctor to come out when it was over and all of a sudden, we heard "FAST team to the Diagnostic Center STAT" repeated twice over the hospital intercom. We both froze and looked at each other, not knowing what the FAST team was but, fearing it was for Matt. Sure enough, about 10 minutes later, the doctor came out looking a bit flustered and told us that he had to stop the procedure because Matt had struggled with the medication and stopped breathing for a bit. One of the nurses later said that he was "purple on the table and they had to turn him over to bag him". Lovely. Just what we needed, huh? Once I heard that, I lost it. I asked to speak to the doctor and I kind of let loose on him for a bit. He listened and assured me that he would not let it happen again. He wanted Matt to rest for a few days after that incident before they tried the procedure again. So, the plan is for Matt to have the procedure to get the stone done again tomorrow under general anesthesia with an anesthesiologist right there with him the whole time. If this second try is successful and Matt can eat some solid food tomorrow afterwards and keep it down, he may be able to come home tomorrow. Of course, we would ALL love that...especially Matt!

Matt is in good spirits and actually has felt better late yesterday and this morning than he had in a while. But, he had nothing to eat until yesterday and that was just clear liquids so, he is very weak and still a bit dizzy from the pain medicine. He also has a stomach ache this afternoon which may be from two antibiotics they are giving him to prevent infection. Overall, now that we know what is going on, we realize that it is resolvable and, with time, Matt will be feeling much better again. There are more stones in his gallbladder so eventually, he will have his gallbladder removed too but, not for at least a few weeks. They want his digestive system to continue cooling down before that takes place. We have been told by a couple of different people at the hospital that they had never seen someone's liver and pancreas numbers that high before so, it will likely take some recovery time before Matt is really feeling well again.

We are relieved that Matt's issues seem to be relatively easy to repair and that Max is once again healthy and feeling good but, we are again exhausted. Tuesday was another one of those totally exhausting days - in every way - mentally, physically, emotionally and spiritually. Sitting next to Matt while he recovered from the "procedure gone wrong" was scary and I experienced a wealth of emotions. I realized how much we have been through together this past 13 months and what a partnership we have forged as a result. We were a strong couple before...now we are even stronger. He is my love, my best friend, my partner and I couldn't imagine not having him here with me. We make a great team - he always pulls me up when I need it and I do the same for him. He is a fabulous husband and dad and we all love him.

We have just had too many of these kinds of days this past 13 months. We long for the days when our biggest worries were how we would get the kids to school on time and get all their homework done admist our work schedules and their extra-curricular activities. We know that we will get back to that place eventually but, we also know that through the experiences we have had over the last 13 months, good and bad, we are forever changed. Our perspectives on life are not the same...our fears and worries are completely different....our eyes have been opened in ways we never expected or even imagined. While we long for the fun days to return, we know we always want to remember these tough ones...they will make the fun times even better and more memorable.

We have been overwhelmed once again by the love and support of our fabulous community - our families, friends, neighbors and church. Yet again you all have shown us how much you care. Thank you for shoveling and snowblowing our driveway, for yummy meals, for gifts, flowers, cards and calls...and for your thoughts and prayers.

I want to leave you on a positive note today. Last Sunday, for Valentines day, Max and I woke up at Children's Hospital, once again. But, thanks to Max's Meals, there was a bit of excitement in the air! There were signs posted in the parent lounge in the BMT Unit and on the Hem/Oc Unit that a Valentine's lunch would be provided by Max's Meals that day. Much to our surprise, we got to be recipients, once again, of the generosity of our support community and got to see first hand how you all are brightening tough days for lots of families. My parents friends, the Cummins family, very generously donated the luncheon from their Lee's Famous Recipe Chicken business. The families of A5 got to enjoy chicken, mashed potatoes, cole slaw, green beans and biscuits, along with homemade cupcakes prepared by my mom. It was all a hit and if you look in the comments from my last post, you will see that one of the families near and dear to us that is still in the BMT unit down there with their precious son, Brayton, really enjoyed the meal once again. Thank you to all of you that have supported Max's Meals and especially to the Cummins family for making this Valentine's luncheon possible!!

More soon....

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +320: Quite a Journey!

2010-02-15T21:22:00.004-05:00

It's day +320 for Maxer (day +1 in the hospital for Matt :) ) and I thought I'd just give everybody a quick update. As Sarah reported for you all yesterday, we've had quite a journey the last few days! I'm exhausted so, I'll be brief and add more details in later.

The great news is that Max is home and doing well. We were discharged from Children's on Sunday afternoon and he is continuing to show improvement. He seems to be beating the RSV now, thanks to the help the doctors gave him down there. They loaded him up with more antibodies through an extra dose of IVIG Saturday night and into the wee hours of Sunday morning and three rounds of IV antibiotics. He did have some bronchitis developing so, they wanted to knock that out to prevent any pneumonia. Their intervention seems to have worked and it was definitely necessary that he stay down there Saturday night to be monitored, etc. The four hours in the ER and every 15 minute interruptions throughout the night were worth it!

Unfortunately, Matt remains in the hospital tonight and will likely be there for some time yet. He is at Anderson Mercy (thank God), which is only about 5 minutes away so, I was able to get up there twice today to spend some time with him and talk with his doctor and nurses (we have had about 10 inches of snow in Cincinnati today, just to add to the fun around here). He is now under the care of the GI group at Mercy and saw Dr. Ionna today. I was there when he came in to check Matt out and chat with him. At this point, he is strongly suspecting that a gallstone has become lodged in a precarious place where it is causing the ducts that lead to the gallbladder/liver and the pancreas to back up, thus causing inflammation of the liver and the pancreas. Matt's liver and pancreas blood levels are through the roof so, they are trying to determine what is causing this inflammation and stop it. However, they can't do a whole lot until things calm down a bit in his gut. So, at this point, they are keeping him on IV fluids and pain meds, along with some antibiotics and buying some time so that his gut can cool off some. They are planning to do a scope down his throat tomorrow to look for the source of the problem (possibly a stone) and did a CT today as well, looking for the culprit. We are hoping they will have more answers tomorrow and that a bit more of a plan will be developed from there. Matt is more comfortable tonight than he was last night by far. He remains lethargic and a bit disoriented/spacy from the pain meds but, even that is improved from last night in the ER.

I have been here the last two nights with the kids and able to spend some good quality time with them. They are concerned about their daddy but, they understand why he is in the hospital and don't seem scared. My parents have been a HUGE help with them throughout the past few days, as usual. Don't know what I would have ever done this past year without them! Thanks, Mama and Papi - you're the best!

My only complaint is that I am SICK of hospitals!! I would have never imagined that I would know them so well!!! UGH!!! They are no fun, no fun at all! But, this past few days has absolutely reminded me again how precious each day is and how much we need to appreciate each one. Never, ever take your health and happiness for granted. Count your blessings. Celebrate the good stuff. Live in the moment.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Another Bump on The Recovery Roller Coaster

2010-02-14T19:23:00.005-05:00

Two hospital visits for the Meyer's in less than 24 hours :( Please keep the Meyer's in your prayers.

The first was Max. On Saturday he was feeling tired, had a bad cough and ended up running a fever in the late afternoon. A fever = automatic trip to the hospital so Kristi quickly packed a bag and headed down to Children's with Max. He was treated at the hospital for RSV, a virus that is typically only common in babies. He stayed overnight and came home late afternoon today (Sunday). His impromptu trip to the hospital ruined his NBA Slam Dunk party he had planned Saturday night with his cousins. As you recall, Max had requested to attend the NBA All Star Game this year as part of his Make A Wish, but was not able to attend due to NBA rules and timing with his recovery. So this party was going to be his own little NBA All Star Jam celebration. He was really bummed he had to miss it, as we all were.

The second was Matt. Shortly after Max arrived home this afternoon, Monica, Matt's sister, took Matt to the ER. From previous posts, you might remember that Matt has had several attacks of abdominal pain in the past month or so and no tests have been able to uncover the source causing these attacks. The pain was severe and debilitating today, so Monica took him to the ER. He has been admitted to treat pancreatitis. He's on IV fluids and antibiotics now and we're not sure yet when he will be released or what the next step is, but we'll keep you updated. We just ask for your prayers for Matt too. I am sure it is difficult for him to relax and not stress now, but we know that is what is best for him. Please pray that Matt will be recovered soon and home with his family and that Max will soon be off the recovery roller coaster and enjoying a healthy 8 year old life, free of trips to Children's!

Love,

Aunt Sarah (standing in for the very talented writer Kristi, and Matt, Max, Alex, Ellee and spud)

Day +315: Continued Good News

2010-02-10T14:43:00.006-05:00

It's day +315 for Max and I have been meaning to do an update for some time now but, haven't been able to get to the computer until today! Last Friday we had a good visit with Dr. Davies down at the Day Hospital. We got continued good news along with a few surprises. Max's progress thus far remains positive and we are at a point where he can do a bit more, very cautiously. Dr. Davies indicated that Max's immune system is working now, although not in "top notch" fashion. Thus, he does have some ability to fight off germs and infection, coupled with his continued monthly infusions of IVIG (the IV immuno-globulins from donors which help bolster his immune system). With all this in mind, she told us that she thought it was safe for Max to cautiously venture out a bit more without his mask! For example, she said that he could accompany me to stores during the week as long as we avoided anyone that was coughing or appeared to be ill and practiced good hand washing. She recommended keeping his mask handy in my purse just in case and really just staying away from people as much as possible. Great news! Max and I were smiling ear to ear!

We have been putting Dr. Davies advice to the test the past few days and I have to tell you, it has been stressful. While Max has enjoyed getting out a bit more, it is so hard to know whether we are protecting him enough, especially during this cold and flu season. We all went to church together last Sunday, for example, as Max REALLY wanted to go (thus the picture above). It was wonderful to be able to be there together and, while we all enjoyed it, Matt and I have already been debating about trying it again. There were a few people coughing and, although we sat in the back row and had Max wear his mask in and out and during communion and really not touch anyone else, it was still worrisome for us. Even Max cast a few worried glances at me as we heard people cough during the service. We all SOOOOO want to be able to do these things again but, I think we are realizing that it's not worth the risk quite yet. We need to continue to be patient and find those things that we can do that are truly safe and will keep Max healthy.

On this note, I just got off the phone with one of the Nurse Practitioners we have been working with at Children's. Unfortunately, she was calling us to let us know that Max's engraftment percentage from last Friday has fallen to 87.8%. It has only been lower than this once this past year and, while she said that Dr. Davies is not too excited about the drop, she does want Max's level to be checked again in two weeks so that they can monitor it and decide if intervention is necessary. Of course, I called Matt as soon as I hung up and we are both concerned. We have been here before and everything had worked out just fine for Max but, I tell you, the worry never seems to end. Just when you think you are getting somewhere in this process, you are told that you aren't.

I also discussed Dr. Davies latest advice with our Nurse Practitioner and asked her to follow up with her for more clarification regarding what is safe for Max to do at this point. However, as the two of us discussed it and I heard her opinions, I was reminded to be patient and to take our time with getting Max out in the real world again...especially at this time of year. Her words that are sticking with me were, "I think I know you well enough to know that you don't want to have any regrets." EXACTLY!!!

So, we are searching for ways that we can safely get Max out a bit and keep him happy. He is SO ready for more and deserves a chance to celebrate a bit and have some 8-year old fun. With that said, I am planning to take he and Alex, along with cousin Ben to Max's favorite indoor skatepark tomorrow afternoon - Ollie's! Max and Alex have not been in well over a year and they are totally psyched about the trip! I think it should be safe there. Generally, it is an older crowd with most of the kids being in High School. In addition, we are going to go right when it opens, when it is typically pretty empty. Finally, Max really doesn't get near any of the other kids while riding his scooter. I'll be sure to take lots of pictures and share the excitement of this trip with all of you soon.

Along with everything I've shared with you so far, we did get two other pieces of somewhat surprising news at our visit last Friday. The first was that Max will have to avoid all public pools through the summer. Unfortunately, this means that we will miss-out again this summer on the fun times we typically enjoy at our swim club. However, we are adjusting, as usual, and already planning other fun water related things we can do around home here - potentially involving a new Banzai (for those of you that don't know what that is it's a GIANT inflatable water slide)! Max will also need to avoid the public pools in Florida when we go with Make A Wish however, he will be able to swim in my Grandma's pool while we visit her and can swim in neighbors pools this summer, as long as we know that no one sick has been in them.

The other surprise last Friday was that Max will remain on his Cyclosporine quite a bit longer than we had originally thought. At the start of the BMT process, Dr. Davies had told us that he would be on the immune suppression (Cyclosporine) for probably 6 months post transplant. At the 6 month mark, she told us a year post transplant. Now, as we near the year mark, she is saying that he may be on it until the end of 2010 or possibly even longer. Her reasoning for this is to protect Ellee's graft. She feels that Max's Cyclosporine level is safe at this point and that there is no rush to wean him from it. By keeping him somewhat immune suppressed, she is protecting his remaining marrow from gaining strength while buying Ellee's marrow time to grow and flourish so that when she does wean the Cyclosporine, Ellee's marrow will be sure to take over and "win" the tug-of-war. We have come to terms with this surprise and accept it for the most part, although it does cause us some continued worry. The insert that comes with every bottle of Cyclosporine warns that it can cause Lymphoma so, that tends to make you a little concerned. However, we are reminded that people who receive organ transplants remain on Cyclosporine for the rest of their lives to protect them from rejecting the transplanted organ.

You can probably sense from reading this post where we are...we continue to feel blessed that Max is doing as well as he is and yet, we continue to worry, worry, worry. This is a LONG process and we have again been reminded that we need to be patient. We do believe that remaining patient now and keeping Max healthy and protected will enable us to get to the end of this road more smoothly and will pay-off for him in the long run. It is just a struggle to continue to be patient. We would LOVE to just be able to do what we want as a family and not have the worries that we do.

When we begin to be overcome with worry, we try to remember where we have been and how far Max has come and we try to follow the same advice that we have lived by the past 13 months: live in the moment, making the most of each day with the ones we love and being sure that they know it. Max's time will come, the time will come for all of us to be out and about again without worry. We just have to trust and pray and take things one day at a time.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +305: Bored but Happy

2010-01-31T21:32:00.009-05:00

Today is day +305 for Max on his post-BMT journey and all remains well. We had a good time quietly celebrating day +300 last Tuesday together. Matt was out of town for work so, I took the kids for donuts in the morning and we actually went in to Dunkin and they got to pick out the ones they wanted (instead of the drive-thru we've been doing for months). There was no one in the store and Max wore his mask and didn't touch anything so, it was perfectly safe, just in case you were worried. :)

We are definitely starting to get a bit braver and venture out a little bit more. Max was actually in seventh heaven on Thursday of this past week as he got to go to Target for the first time in about 13 months! Matt and Alex went to the Xavier basketball game and Max, Ellee and I were sitting around here bored so, we decided to take a trip to Target. It was a bit nerve-wracking for me but, I made Max as safe as possible by making him ride in the back of the double stroller with the sun cover over him, not touch anything and wear his mask. It was not crowded in the store at all since it was about 7:15 pm but, I still made sure to stay far away from all people. We got lots of strange looks but, Max LOVED being there! We went up and down the toy aisles and the video game aisles and he looked at everything before deciding how he wanted to spend the $20 he had saved up. He ended up getting a remote control truck and has really been enjoying it.

We enjoyed a very fun evening on Friday with Matt's cousin, Megan and her husband, Todd. They invited us to their house to watch the Cavs play the Pacers, as Todd is a huge Pacers fan and has enjoyed talking with Max about the NBA. We all had a ball! Todd and Megan treated the boys to a very special evening. They had the house decorated for the game, had trivia prepared to quiz the boys with, had a Nerf hoop hanging on the back of their front door and even had special basketball oriented prizes for them. The boys have already asked several times when we can go back! They treated the boys very specially and I know they will remember that night for a long, long time. Thanks so much, Megan and Todd!

Other than this bit of excitement, things have been very quiet and relatively boring around here, which is ALWAYS a very, very good thing in the BMT world. It was a regular joke when we were inpatient and doesn't change a bit when you are outside the hospital. Boring and uneventful is just the way we like it right now!

Actually, our horizon is brimming with activity after activity and Matt and I are beginning to freak out just a bit. We have lots planned for the relative near future and it still seems somewhat impossible at this point, given the continued relative-isolation that we are living under to keep Max healthy and healing. We finalized our trip to Disney with Make A Wish on Friday. We are scheduled to go from April 17 - 23 and then we are going to tack on a five day trip down to Marco Island to visit my Grandma. She is turning 90 tomorrow and we haven't seen her in over 2 years now! We had a trip planned to see her at the end of February last year which we had to cancel after Max was diagnosed. We are all getting so excited about this trip. Everytime there is a commercial on for Disney, we all stop, listen and clap! We can't wait!

Prior to this huge event, we have Aunt Sarah's (Matt's youngest sister's) wedding on March 27th that we are all a part of. We are so looking forward to that also...it is going to be like our grand "coming-out" party since it will likely be one of the first times we are all together in public places since Max was diagnosed. We can't wait to celebrate with Sarah and Ryan and just enjoy having fun together. We also have a trip to Hilton Head with all of the Meyer family planned in July and 6 weddings for my cousins this summer! So, things are going to swing in the other direction soon and, while it is so exciting and wonderful to think that we will ALL be able to participate in these activities, it is also somewhat terrifying at this point. We know we will be ready when the time comes and that we will all have HUGE smiles pasted on our faces as we enjoy these events together.

Max is due down in Day Hospital on Friday for his monthly check-up and medications. We will definitely have another long list of questions for Dr. Davies, as we are anxious to get her take again on all these upcoming activities. I am certain that Max will receive another good check-up but, I will be sure to post an update as soon as I can after our visit on Friday.

Max's Meals is continuing to truck along. We are in the midst of planning a Valentines Day luncheon for the inpatient families in the BMT and Hem/Oc units at Children's. There is so much more I want to do with Max's Meals but, I find myself continually not getting to do it with the demands of the three kids and the crazy puppy here at home. I know that eventually I will get to it and make more of it but, for now, thank you to all of you that have donated funds already! It is making a difference and, with your help, we are going to be able to closely meet our goal of providing at least one meal a month to the inpatient families this year.

I did have one other bit of excitement this week that I wanted to share with everyone. On Friday, I received an email from Jordan Culbreath's mother, Alma. You all may remember Jordan from an earlier post of mine about Max's heroes (you could find it if you look back - I think it was in October or November). Jordan is a senior at Princeton University and a star football player on their team. He was unfortunately diagnosed with Aplastic Anemia earlier this year and has been battling the disease ever since. The boys pray for him every night with Matt and I (reminding us to include him in our prayers if we somehow forget) and about a month ago, I finally decided to get on his Caring Bridge site and see how he was doing. He is undergoing some of the alternative immune suppression/chemo therapies in hopes of combatting the disease as a suitable bone marrow donor has not yet been found for him. I posted a note on his site to let him know how much my boys admire him and that we are always thinking of him and praying for him. Last week, his mother wrote me back to say that she had found Max's site back in November and they were all very touched by his story. Don't tell Max but, they are sending him an autographed football from Jordan! I am keeping it a surprise because I know how much it will mean to him and how much it will brighten his day when he receives it.

I know how much it will mean because I know how much it meant to me to receive that simple email from Alma. To know that there is someone else out there, especially someone like Jordan, that has been afflicted by this disease and to make a personal connection with them and their family is just awesome. When I read about Jordan back in October, I felt somewhat vindicated in a strange way, knowing what an amazing athlete and picture of health that he is. It helped me to answer some of my questions about Max - how did he get Aplastic Anemia; why did this happen to him? Questions that we will probably never be able to answer. Somehow, it gave me some peace that this disease could strike anyone, at anytime and we really don't yet know why. I so wish that a suitable bone marrow match could be found for Jordan as a successful bone marrow transplant is the only sure cure for Aplastic Anemia [another story to demonstrate how important it is to join the National Marrow Donor Registry (http://www.marrow.org/) and to spread the word to others to do the same]. While we don't know Jordan and his family and may never have the chance to meet them in person, there is a connection between us that will be there forever. Our precious sons are fighting for their lives against a rare disease. I know Alma's fears and struggles and those of Jordan's first hand and I wish no one else had to endure them. We pray that Jordan will be cured and go on to live a long and full life, along with our Max.

Thank you for continuing to join us in our journey and for all your thoughts and prayers. More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +294: Back on a Smooth Road

2010-01-20T17:48:00.009-05:00

It's day +294 for Max and we have been riding down a smooth road again for the last few weeks. His Cyclosporine level issues have resolved themselves for the most part, the signs of graft vs. host disease that he had have calmed and we have not been down to the hospital in almost a week again! The best news is that we are not slated to be back down there for another 16 days now which makes Max very happy! He just asked me today when our next Friday Day Hospital appointment was and then he calculated the days until our next scheduled visit, Feb. 5th.

Alex returned to school 3 weeks ago and has adjusted extremely well. He is really enjoying it. He likes his teachers and classmates and has been having a good time playing with the Legos in the classroom and learning his letters and numbers. It has been remarkably nice to have another return to normalcy in the house. I can't tell you how good it has felt to have Alex back in school. I didn't think it was going to be this way but, it has really helped all of us to have the normalcy. All four of us enjoy taking him to school on Monday thru Wednesday and just getting to see a few people while we are dropping him off! Max wears his mask while we are in the school and people look at us with wondering looks in their eyes but, he doesn't get bothered at all. The mask has become a welcome part of his life as he knows it provides him with valuable protection from germs at times. Ellee loves going into the school with Alex and seeing his room. In fact, she is dying to get to school. She hates leaving Alex there, however, and has cried part of the way home every time! Yesterday when we picked Alex up, she gave him a huge hug as soon as she saw him and then held his hand all the way to the car. It was precious. Her world is her two brothers and she definitely misses them when they are not with her.

We do have a little change of plans with regard to Max's return to school. I didn't want to put anything out in the blog until I had the chance to talk to the school about it but, at our last appointment a few weeks ago with Dr. Davies, I asked her about school. We were tentatively planning (as ALL plans are in the BMT world) Max's return to 2nd grade at Wilson for sometime in March. However, Dr. Davies did not want him to return until at least mid-April and said that she did not think he could return at all this year for educational purposes. She would like him to spend a bit of time late in the school year "re-acquainting", as she put it, with the other kids and the school. The primary reason for this delay is really Max's energy level. She does not believe that he can make it through a full day of school and, I have to admit, I was relieved to hear her say this. We definitely notice often that he is still tired...more tired than usual...and this is perfectly normal for him at this stage of the BMT marathon. I have been wondering for some time how he was going to make it through a long, tiring day at school. So, at this point, since we have our Make A Wish trip to Disney tentatively scheduled for the end of April, we are planning to get Max up to school for some social-type times in May. We're going to plan it out more specifically as it gets closer but, we are initially thinking maybe some class meetings, lunches and recesses. Then he will hopefully return normally with everyone else next year, to 3rd grade.

Although this news was a surprise to us, we have learned not to be surprised by anything throughout this journey. It is a long one, as we have referenced many times, and Max's health and healing are of the utmost importance to us. Whatever we need to do to keep him safe and getting stronger everyday is what we are going to do. Max was definitely a bit disappointed and confused but, understanding and agreeable to continuing his home schooling with his wonderful tutor, Mrs. Conlon. It will be a banner day when he is able to go up the steps of the school bus again and be a student, just like the other 3rd graders.

With all this in mind, and to give Max some reading and writing practice, I have setup a personal email account for him. I thought it would be fun for him to get his own messages through it and be able to respond to people all on his own, rather than through this blog or through my email account. So, please feel free to send him a note anytime at maxjams@live.com. He is VERY EXCITED about this idea and had a smile on his face tonight as we answered his first email from Daddy!

People often ask me how I am doing throughout all this and overall, I am doing well. I am thrilled to see Max doing so well and feel so incredibly blessed with his progress. I am so grateful for my three beautiful children and feel lucky to be able to have so much time with them at these precious ages. We really do have extra time to just be together and have fun and I am cherishing that. I have to admit that it is challenging, however. Being at home 99% of the time with three little ones for over a year now has been something totally new for me. I find my patience tried just about everyday, especially when you add in the antics of Mr. Spud! I feel like we have all had to continuously adjust this year and it's been tough. But, whenever I feel frustrated or sorry for myself, I try to think about all of the families that we know and those that we don't know who have so much more difficult struggles. They are all the motivation and inspiration that I need to get through the tough moments.

I want to leave you on a high note tonight. Yesterday we got to do something that we haven't done in well over a year - we went to see a movie! Max and Alex have really been wanting to see Alvin and the Chipmunks, the Squeakwel since it came out at Christmas-time and I have been waiting for the right time to take them. I wanted to go when school was in session and after the movie had been out for awhile so that the theater would not be crowded at all. Some time ago, we had gotten permission from Dr. Davies to do this, as long as it was under these conditions. So, finally yesterday, I got the guts to do it! My mom and I took all three of the kids and it was such a joy to experience with them. As we were walking in, Max was so excited he could barely contain himself. He looked at all the movie posters and said, "wow, this place has everything!" Then when he saw the concession stand, he yelled, "they have ICEEs!!!! And they even have Mountain Dew!" I had promised ICEEs and popcorn, if they had them. While we were ordering our food, Max was checking out all the candy and I heard him say, "Awesome!"

The kids all enjoyed the movie. We were almost the only ones in the theater. At the last minute, a man walked in with two little kids but, they sat a few rows away from us so, I didn't worry. Ellee was talking, laughing and dancing throughout the movie and Alex was just loving the popcorn and ICEE. Max loved the movie and has talked about it a lot today. He wore his mask in and out of the actual theater with no complaints. After the movie was over, everyone had to potty so, we headed to the bathroom. We were lucky that no one was in there either. They had the new super powerful hand air dryers and the kids were hysterical with them. They had a blast playing with them for a few minutes and my mom's comment was, "wow, Kristi, you gotta get out more!" :) Overall the trip to the movies was a hit. They are already asking when we can go again!

Thanks for keeping up with our continued journey and for all your thoughts and prayers. More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +286: A Reflection

2010-01-12T13:25:00.006-05:00

It's day +286...a big day around here in a weird kind of way. One year ago, just about this time, we were in the Hematology/Oncology Clinic at Children's Hospital for the first time. I had taken Max to our Pediatrician that morning, only to find out from a blood test there that his blood counts were extremely abnormal and that he needed a Hematologist to determine what was going on. I clearly remember the looks of concern on the doctor and nurses faces at the Pediatrician and the doctors words, "You need to be down at the Hematology/Oncology Clinic at 1:00 today. You should pack a bag and expect to be admitted. They are going to want to keep Max until they figure out what is going on." I also remember the look of shock on my mom's face when I went back to her house to see Alex and Ellee and tell her where we were headed. Max had played basketball only two days earlier in a crowded gym and had a great game! We had all watched him run up and down the court, loving every second of it! How could this be?!?

You all know how things went from there...a range of possibilities by that evening (ITP, Aplastic Anemia or Leukemia); a bone marrow biopsy the next morning; a diagnosis of Aplastic Anemia that afternoon with the doctor saying, "worst case, it would mean that Max will need a bone marrow transplant but, we don't think that is likely at this point"; weeks of CBCs and blood/platelet transfusions; numerous genetic tests on Max, Alex, Ellee, Matt and I; a brief period of time when a genetic disease, Fanconi Anemia, appeared to be the cause, followed by the relief that it was ruled out; preparation for Max's bone marrow transplant including a PICC line, a central line, EKG, CT scans, chest x-rays, ultrasounds, more blood work, etc; admission for the bone marrow transplant; chemotherapy; Ellee's bone marrow harvest; the actual transplant; discharge; and a long, winding road of recovery that Max remains on today. Wow...what a year it's been!

I have included the picture of Max at the top of this post because I think it speaks volumes about what a year this has been for him. This picture was taken by our friend Emily Mengel just this past October. She also took the picture of Max at the top right of the blog home page in the fall of '08. I hope when you look at the Fall '09 picture at the top of this blog entry, you will see what we see...he looks fantastic. We say all the time how amazed we are at how good he looks, given what he has been through this year. My typical comment to people is that he looks and acts more and more like the old Max all the time, yet there is something very different about him. He has matured a ton. I am sure that some of it is just the maturation that happens typically for a boy between 7 and 8 years of age...between 1st and 2nd grade...because I have seen it with many of Max's buddies in the neighborhood and with our nephews. But, there is more than that for Max. He has matured beyond his years and has a new zest for life. He notices and appreciates the little things much, much more than he used to. He loves traditions now and really enjoyed celebrating many of them over the holidays this year. He cherishes his brother, sister, mom, dad, dog, cousins, grandparents, aunts and uncles. He has just really changed in big and good ways. It has been a transforming year for Max in many, many ways.

Our hope for Max in this journey remains the same...that this year has just been one chapter in a very long, full and wonderful life. I have dreams about the day that he will be sitting on his couch with his children, looking back at his picture from the fall of '08 and then at his picture from the fall of '09 and telling them about the life saving adventure he had between those pictures. Then Aunt Ellee and Uncle Alex will walk in and add their memories to the story to finish painting the beautiful picture in Max's kids heads. I know they will be amazed and awed by their father's journey, just as we are today.

Max - we are so very, very proud of you. Your courage, strength, laughter and never-ending optimism thoughout your difficult journey this past year has taught us things about life that we never would have learned otherwise. Along with your brother and sister, you are our greatest gift. We are blessed to have you as our son and eternally grateful for having you in our lives. We love you.

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +282: Off to a Great Start

2010-01-08T14:11:00.004-05:00

It's day +282 and I thought I'd give everybody a quick update on Max's status and things around here since another week has gone by already! Max is doing well. We have been down to the hospital twice this week and things are again positive and good. On Monday, Max had another blood draw to check his cyclosporine level and kidney function (they monitor this closely while the kids are on the cyclosporine as it is tough on the kidneys) and finally, things were better with regard to the cyclosporine level! It wasn't quite where they want it to be but, it was much closer so, we all breathed a sigh of relief, at least somewhat. They also checked his eye and rash while we were there and both are much improved. Max did much, much better with the needle stick. I worked on preparing him all weekend, little by little, and we are now doing some breathing together (kind of like when you're in labor :) ) and trying to think of a happy place while they are doing it. Those two things, combined with some numbing creme we are putting on before we leave here, seem to be helping him get through the sticks much better.

We were down in Day Hospital yesterday for our regularly scheduled monthly IV infusions and visit with Dr. Davies. Max's cyclosporine level was again acceptable (phew!) and Dr. Davies felt that everything looked great! She kept commenting that Max looked so grown up to her, she couldn't get over it. She hasn't seen him in probably about two months and she just kept commenting on how good he looks and how grown up he has gotten. Nice things to hear from your child's bone marrow transplant doctor! She also gave us more good news - Max is now off of the low bacteria diet that he has been on since shortly before the transplant! This was music to Max's ears as he has been dying to eat strawberries and grapes! We stopped and I ran in to pick some up on the way home. He has eaten them for breakfast, lunch, dinner and snacks! He also got to have a treat on the way home yesterday - a McDonald's strawberry shake - one of his favorites that was also not allowed on the low bac diet due to the soft serve ice cream. In addition to this good news, Dr. Davies said that we are a go for our trip to Disney with Make A Wish at the end of April (April 17 - 23rd)! She has already signed the paperwork and one of our Nurse Practitioners has made sure that they have all our reservations ready to go! Very, very exciting! Finally, Max got a second H1N1 vaccine yesterday while we were at the hospital to try to help give him at least some level of protection against that virus.

All in all, our visits this week were positive and we seem to be getting back on our smooth road to recovery for Max. They were exhausting as Max is definitely tired of the hospital and the pokes but, when you leave on a high note, it really helps. 2010 is already looking up!

Alex also had a big week - he returned to preschool on Wednesday afternoon! He really seemed to enjoy it. I stayed with him for about the first hour but, realized shortly that he was having fun and didn't seem to care if I was there or not. He is in an afternoon class so, it is smaller than usual with only 10 kids. Eight of the kids are boys so, Alex is in heaven! He said that he played with several of them when I picked him up and told me that a couple of them were really nice to him. I think it is going to be great for him to be back. It was a big day around here to have someone returning to "normalcy" like that and we celebrated with pizza that night! We will be practicing extra good hand washing when he comes home and saying some prayers that the wrong germs don't make their way home with him.

We had a pretty good snow fall here in Cincy yesterday too and we all enjoyed playing in the snow last evening after Matt got home (thus the pics at the top of the post). It was really Ellee's first time to play in it and she enjoyed a little ride in our sled. I pulled her up and down the street and she kept saying, "go faster, Mommy!" I'm sure she will love sledding down some hills soon! Alex, Max and Matt enjoyed playing tackle football together and Spud ran around with some of the other neighborhood dogs and loved digging his nose down in the cold stuff!

We are off to a good start in 2010 and are hopeful that this will be a wonderful, fun year for all of us, filled with healing for Max. As good as things are, it remains a struggle for me to adjust back to reality. I know with time that things will get easier but, for now, it's difficult. Our eyes have been opened to a world we did not know existed, we have truly learned how fragile life is and our life priorities have been completely shifted. I think about and pray everyday for our friends that remain hospitalized in really tough situations with their children (especially the Akins, the Alfreds and the Martins). I wish there were something more that I could do for all of them and I feel helpless most of the time. I am working on getting Max's Meals really up and running so that at least we can provide families like them with some special comfort food now and then and be sure they know that people are thinking of them. Thank you to all of you that have provided us with donations! We are working on a Valentines Day dinner now and will keep you posted as things progress. These families are an absolute source of daily inspiration for me. Thinking of them and reading about their struggles reminds me constantly about what is really important and makes me appreciate every moment that I have here with my kids.

We have been incredibly blessed throughout this journey and have learned a whole lot about life. We are so thankful for the support that all of you have provided us along the way and continue to provide us now. I can't tell you how much your notes, emails, cards, phone calls, packages, etc. mean to all of us. They brighten our days. Thank you.

More soon.

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +275: Goodbye 2009...Hello 2010!

2010-01-01T16:43:00.003-05:00

It's day +275 for Max and New Years Day...Happy New Year! We have had an eventful past 10 days and definitely sent 2009 out with a bang but, not exactly the kind of "bang" we would have liked! I'm going to start with the good stuff and I'll get to the rest in just a bit...

We enjoyed a wonderful Christmas Eve and Christmas last week, followed by a fun day celebrating Max's birthday. I've included a picture of the kids holding some of their favorite gifts - Max, Tony Hawk Ride (the skateboarding video game); Alex, his Chad Johnson jersey (not OchoCinco, Santa couldn't afford that one!); and Ellee, her stuffed bumble bee and baby doll. Max told me that it was the best Christmas ever and that was an excellent gift for Matt and I!

Max's Meals Christmas Eve dinner at the hospital was a success too, thanks in HUGE part to my mom's friend, Donna Phelps and her great family. They cooked up a delicious feast of roasted pork, scalloped potatoes, salad and green beans that everyone was raving about. They also had some of Donna's speciality deserts which were a big hit! In addition, we brought down a couple of trays of homemade Christmas cookies that the Meyer and Sherwin girls put together and the families enjoyed those too. Overall, we got to serve many of the inpatient families (including several of the kids themselves) on A5 and from the ICU, along with some doctors, nurses and other support staff. I personally got to see two families that are near and dear to our hearts, the Alfred's and the Martin's, and give them all big hugs. Both families continue to struggle with Ethan and Brayton's recoveries from their bone marrow transplants so, it was great just to see them and to feel like we were able to do something, even if it was small, to brighten their days just a teeny bit. We know first hand how tough it is to live in that hospital, watching over your sick child, day after day...so we knew that this time of year has to be especially difficult. We all hope that all the families just got to have a small break from the norm down there and enjoy some home cooked comfort food.

The rest of the week we enjoyed just hanging out and playing with all of the kids new stuff. It was very quiet around here, as usual, and we were struggling a bit with the after-Christmas let down. The kids and I are definitely growing more and more tired of this isolated lifestyle, being here at home 95% of the time, with the exception of a few small trips to relatives homes or to the hospital. With the winter now setting in and the cold here to stay for awhile, it's getting tougher to keep everyone happily occupied inside these walls.

In the midst of all this, we continue to battle Max's cyclosporine level, as you will probably remember from my last post. We have been down to the hospital multiple times each week to have blood drawn so that they can monitor the level of the drug in Max's system and try to get it back up to where it needs to be to prevent him from having other problems, etc. We have gone back to the non-generic version of the drug over a week ago and raised the dosage level 4 times since then, all to no avail. Obviously, each time they want to check Max's blood levels, he has to be stuck with a needle, which he was no longer accustomed to due to the central line he had for almost 10 months. We removed the line, as you'll remember, because we were down to once a month sticks for IVs and the benefits of no sticks no longer seemed to outweigh the risk of serious infection from the intravenous line. So, as luck would have it, one week after we remove the line, we encounter these cyclosporine level issues and have to go in for multiple sticks each week!

We have been getting Max through this the last few weeks by doing finger sticks rather than peripheral needle sticks. However, yesterday morning when we went in for our second level check of the week, his fingers just wouldn't cooperate. The blood just kept clotting up and wouldn't drip out enough to fill the two small vials that they needed. Finally, after three finger sticks, the nurse was able to fill the vials. During our visit yesterday morning, I asked the nurse to have our Nurse Practitioner, Paula, come in to look at Max's eye again (the same one that had the styes last week) as it continued to be red in the corner of the white part. Both Dr. Joshi (our regular outpatient clinic BMT doc) and Paula checked out his eye and then lifted his shirt, only to find a mild rash over his tummy and back. Much to our surprise, they think that Max is experiencing a mild form of graft vs. host of the skin and have put him on an eye drop and lotion three times a day to try to combat it. They think the redness in his eye may also be GVHD presenting itself. They are not overly concerned at this point and believe it is from the cyclosporine level issues we are experiencing but, as a result, we will be back down there next week for rash checks and an Opthamology appointment. As Paula said as she was leaving our room yesterday, "you all are going out of 2009 with a bang with that rash!"

We arrived home from the hospital at about noon yesterday morning, tired and hungry as we were only expecting our visit to take about an hour and it ended up being about 3 hours! We were planning to rest for the afternoon and get ready for a fun evening with the Meyer family celebrating New Years. Unfortunately, at 3:30 pm yesterday afternoon, Paula called me to say that the blood had hemolized (clumped together) from the morning and was therefore giving them erroneous readings on some of the tests. Dr. Joshi was insisting that we came down again to have another draw to be sure the levels were alright. I wasn't sure how to break this news to Max and when I did, he was not happy. But, we pulled ourselves together and decided to make the best of it, promising some packs of basketball cards for him if he could just do it one more time. Much to my dismay, things got worse once we got down to the clinic. The nurse, who we know and love from all our time down there, came in and said that we were going to have to do the peripheral needle stick to get the blood, not a finger prick since that had caused the clumping issues that morning. Max began to freak out about this and wouldn't let either of us touch him. At one point, he had me and the nurse both in tears as he shouted across the room, "I have been through enough today, Mom! I have had three sticks already! I am NOT doing this!" It ended up taking three nurses, along with me, to get the blood drawn and Max and I were both exhausted.

On the ride home, we decided that 2009 just wanted to give us one last really shi$%y day so that we would always remember what a crappy year it was and appreciate all the great years ahead! I told Max that I have been thinking for some time that while 2009 may be one of our all time worst years, I think 2010 is shaping up to be one of our best! We talked about all the fun things that lie ahead this year - our trip to Disney with Make A Wish; a trip down to visit Great Grandma (my Grandma) in Marco Island, one of Max's favorite places; Aunt Sarah's wedding in March; our trip to Hilton Head with the Meyer family; another possible trip to Hilton Head for my cousin's wedding; being able to play with lots of friends again; being able to go shopping at Target again (one of Max's favorite stores) or to fun places like the movies, Ollie's skate park, just about anywhere that Max loves to go; just a general return to a more normal 8 year old life. We are hoping and praying that this will all be possible for Max in 2010. We are all very ready for it and greatly missing it.

After talking about the fun to come in 2010, we also talked about the fact that we did have some fun times in 2009 - our trip to the Reds game topped the list; our 100 day party; many days/nights having fun with our cousins. The list was quite a bit shorter than the fun we plan to have in 2010 but, there were good and fun things that even Max could list from 2009. After all was said and done yesterday, we were able to gather ourselves back together, muster up some remaining energy and enjoy some fun with Matt's sisters, their families and his mom ringing in 2010.

Times have been a bit rough again lately. In the BMT world, you never really know what lies around the corner. Things can be seemingly perfect, only to find out the very next minute that they are not what they seem. We are very optimistic that we will get through this bump in the road again with Max and get back onto smoother highways but, we have to admit that this journey continues to be difficult. We know that it could be so, so much worse and we are eternally grateful for the many, many blessings that have been showered upon us along the way...but, we also have to be honest...this is getting old. We are doing all we can to live in the moment and make the best of what we have and where we are each day but, we all have our tough moments. I don't think it would be right if we didn't have them.

One thing is for sure...2010 has got to be a better year. You can bet that you will see us thoroughly enjoying every fun moment that we are given in 2010 and sharing them with all of you.

More soon...

Peace, love and Happy New Year,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +265: An Exciting Week...With A Few Bumps!

2009-12-22T22:25:00.006-05:00

It's day +265 on Max's post-BMT journey and we have just arrived home from a wonderfully fun evening with the Meyer family. During the holiday season, we all traditionally take a family trip downtown to see the cool train display that Duke Energy has and then go visit Santa at the downtown mall. However, this year, because of Max's continued isolation restrictions, we couldn't take our usual trip downtown so, we came up with an alternative. We all met up at Molly and Jim's house in West Chester (Matt's sister) and had a very special surprise visitor - Santa! Ellee couldn't believe her eyes and literally ran across the room to jump into his arms and give him a big hug, while asking at the same time, "Where's my bumble bee for Christmas?" You see, she is in love with bumble bees and has been asking Santa for one for the last few weeks. Obviously, he wasn't able to produce a bumble bee from his sack so, he presented her with a cute little teddy bear which she loves. The boys all enjoyed his visit too. Each of them sat on his lap and told him what they wanted for Christmas. We are all feeling like this just might be the last year of the "magic" for many of them as they have all voiced some skepticism (except for Alex, thankfully) so, it was great to get to capture those moments one more time.

After Santas visit and pizza, we all piled in the minivans and headed to Sharon Woods Park for their Holiday in Lights display. You just drive through a bunch of lighted displays in the woods while listening to Christmas tunes. We all enjoyed it. Overall, the alternative plans proved to be a success! All three of our little munchkins are currently tucked into their beds, fast asleep, with visions of sugarplums dancing in their heads!

I decided to stay up and blog as the next few days will likely be busy and I really wanted to give everybody a quick update and wish you all a Merry Christmas! We had some fabulous news last week with regard to Max's progress, once again. His immune system testing that they had drawn and sent to the labs about a month ago came back good enough for him to stop all the profilactic meds he was taking! So, we are now down to just one medicine twice a day - his Cyclosporine (for continued immune suppression the whole first year)! HUGE progress! We were all thrilled and did several happy dances that day!

Unfortunately, we have had a few minor bumps the past few days with Max and are headed back down to the hospital in the morning for a blood draw to check his Cyclosporine level - the second one of the week, unfortunately. Last Friday at his regular monthly Day Hospital visit, his Cyclosporine level was very low and they attributed it to two things - the stoppage of his other meds and a change in the brand of Cyclosporine that he is taking. When I went to refill his Cyclosporine last week at Children's, I found out that they have been covering our costs at their pharmacy this entire time as our insurance apparently doesn't cover their pharmacy for some reason. Unbelieveable that they have been doing this and we didn't even know it - shows what an amazing organization Cincinnati Children's is!!! Anyhow, we had to switch now to a pharmacy that will be covered (at least partially) and when we did that, they gave us a generic brand of Cyclosporine and ultimately ended up affecting the level of the drug in his bloodstream, a very important piece of his recovery. So, the doctors increased his dosage last Friday and we headed back down on Monday to have his level checked, only to learn later that day that it had further decreased! In an effort to get it back to where we need it to be to prevent graft vs. host disease and other potential complications for Max, we bought enough of the non-generic drug from the hospital to get Max through until Kroger (the other pharmacy) can get enough of it themselves. Oh, the little things that you never think would amount to anything!!! We're getting the level checked again tomorrow morning and hope it will be back where we need it so that we are back on track with this medicine again and Max doesn't have to get any more sticks this week (or next for that matter)!

Besides that, Max has two small styes in his right eye which they are treating and seem to be clearing just fine - just more prescriptions to chase down this week! We did have another rather large bump late last week. Ellee caught the stomach bug that is going around on Wednesday night and was up all night with yucky stuff coming out both ends. Despite my best efforts to protect myself from it, I ended up with it Thursday night and lost another night of sleep trying to get through it myself! It took me about a day and a half to recover from it but, thank God, it stopped with me and has not gotten any of the boys yet, including Matt! We were a bit freaked out, to say the least, because Max may have to be admitted for a bit if he happens to catch it. I took Ellee to get her hair cut last Monday at a local kids hair salon and, despite my best efforts to keep her hands clean, the little bug got her and eventually me too! Ugh - not fun. But, I told myself that it is hopefully over for me this season, at least! Now I'll be available to clean up anyone elses puke and other stuff if it happens to rear it's ugly head again around here!!!

The last week has been busy medically once again and it reminds us that, although Max has made tremendous progress which we are so grateful for, he remains in a somewhat precarious state. The wrong germ could still send us back to the hospital, even just for a day or two stay, and that would be quite disruptive to the routine we have now developed. We just continue to tell ourselves to go one day at a time, be grateful for how well Max has done thus far, and take things as they come...live in the moment. No better time than Christmas-time with three young ones to do that!

We are all greatly looking forward to the next few days. We will be spending Christmas Eve at Gaga's house (Matt's mom), celebrating with the entire Meyer family. I'll be heading down to the hospital yet again this week that afternoon but, for a more enjoyable reason this time. I'm meeting the wonderful caterer there with my parents at 4:30 to set up a yummy, home-style dinner for the families of the patients on A5, courtesy of Max's Meals. We do have a couple of BMT friends down there inpatient right now that I am hoping to hug while I am down there. I know how tough it will be to be in that place at Christmas-time and I'm so grateful that Max's Meals will be able to provide just a tiny bit of comfort to them at this time. I am certain that the meal will be much better than what the cafeteria down there serves and I know how nice it felt when we were there and someone brought even just a coffee cake in to let you know they were thinking of you. Thanks, again to all of you that have already supported Max's Meals! Great things are happening already!

On Christmas morning, my parents and Matt's parents usually come here to see the kiddos open their gifts. Of course, that is a joyous occasion! I am already losing sleep with excitement over seeing their reactions! After that, my sister and her family and my brother will join us for brunch. I always make the traditional egg casserole that my Grandma made for us when I was a kid and having it on Christmas at our house has become our new family tradition. Later in the afternoon, we'll head to my parents to celebrate with my family. It will make for a couple of long and tiring, but cozy and memorable days.

Saturday (the 26th) is also an extremely special day around the Meyer house - it is Max's 8th birthday!!! Most of our families will be travelling to visit other family members that day so, we are postponing his birthday celebration this year to a later date. However, we are working on trying to come up with something special for us to do as a family. Max would really like to go sled riding but, with very little to no snow around Cincy right now, that doesn't look too good (we did have a small bit of snow last weekend and enjoyed making a family of snow men in our front yard)! We are thinking of trying out the tubing at Perfect North Slopes but, are trying to decide if it's too many people for Max to be around. I'm thinking with the 30 degree weather outside and his mask on, it might be safe but, we'll see. We'll let you know next week what exciting thing we end up doing!

We could not be more grateful for the opportunity to take part in these celebrations with our families this year. We have thought back many times lately to this time last year - Max's bruises had just started appearing and we were wondering about them but, really not overly concerned, just thinking they were somewhat typical for a 6/7 year old, active boy. We had no idea how our lives would be forever changed in just a few short weeks. Our world was absolutely turned upside down and our previous confidence in life was shaken to the core. We endured some really tough times with Max - IVs, transfusions, CT scans, x-rays, EKGs, a pic line, a central line, chemo, surgeries...things a parent would never, ever want to see their child go through. But, we feel like we have come out on top. Max is winning this battle against Aplastic Anemia, thanks to many, many blessings we have received: Ellee and her fabulous marrow; Alex and his never-ending commitment and friendship; our families and their constant love and care; our entire community and their unending support; the amazing hospital just 20 minutes from our doorstep; the gifted medical staff we have worked with...the list could go on for hours and I've already written too much! Good things are coming out of this experience. We have learned so much about life and what is important, valuable lessons we will all take with us forever. Spend time with those you love and care about and live in the moment - you never know what tomorrow will bring. Focus on that and the rest will just fall into place.

We believe that our family's story is one of hope and inspiration and shows that miracles really do happen here on earth. At Christmas-time, we want to thank all of you for your continued support and loving care. We hope you have a very, very "Marrow"y Christmas!

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +257: Feeling More and More Normal!

2009-12-14T14:18:00.010-05:00

It's day +257 of Max's post-BMT marathon and things remain good...thank God! We have been enjoying life away from the hospital for over 10 days now and loving it! We have not been up to A5 (the Hem/Oc and BMT floor) for over 3 weeks, something we have not experienced since this ordeal began last January 12th! It feels GREAT! We are loving being closer and closer to "normal" again! At times it's a bit scary, not seeing a CBC (blood levels) from Max for that long feels a little bit like driving without knowing where you are going but, we are getting more and more used to it all the time. Like I have said before, getting further and further away from A5 and Children's Hospital (at least in the capacity of having Max as a patient there) is the goal after all!

So, life is good. We are greatly enjoying the simple things. I knew you would all like the pictures in this post of the kids just being the kids! Bathing together again - YIPPEE!!! Dressing in their Bengals gear to root on the team together in front of the Christmas tree - YIPPEE!!! And I knew you all would love the picture of Spud cuddling on the couch with the boys. He has really become a part of our pack - we all love him and are enjoying him more and more each day. Of course, he continues to challenge us regularly with his "puppiness" but, he is calming down little by little and learning lots all the time about what is acceptable behavior around here. My sister in law, Monica, told me last week that I should share a couple of funny episodes that we have had with Spud for all of you, just to give you a good laugh. So, here goes...

As if we don't have enough craziness around here with three little kiddos, last week Spud decided to help himself to the Christmas tree ornaments several different times. He would just casually walk over to the tree, sniff around and, when no one was watching, pull off an ornament or two and sneak off somewhere to chew on them! Needless to say, I now have the tree blocked off so that he can't continue this and ruin all our low hanging ornaments! To top that little trick, however, he managed to get a hold of a dirty diaper of Ellee's last week and run around the backyard with it, with me chasing him all over, trying not to gag! After a half hour of chasing him around in the 20 degree weather, I finally had to give up. When he finally left it alone, I made him stay outside in the freezing cold for about two hours to "degermify" and then I wiped him down, top to bottom with Clorox wipes and made him drink a whole bowl of water to clear out his mouth! Disgusting, to say the least! Needless to say, I have moved the diaper disposal can to a place where he can't get anywhere near it! I am finally getting smart and puppy proofing this house even more than I already did. It certainly makes my life with Spudder-Dudder a lot easier!

Despite all these little incidents, Spud has definitely worked his way into all of our hearts and we are willing to put up with the extra chaos for him. He was neutered about three weeks ago and has definitely settled down a bit from that too so, we are making progress toward the end of puppy-hood, slowly but surely.

Beyond all that, we have really settled into some little routines around here. Max has tutoring at least four mornings a week, sometimes five and is Skyping three to five times a week with his class too. We are continuing to work on the best times and activities to Skype as it can be challenging for him to hear and follow along at times but, overall, it has been wonderful to have him connected like that. Alex is beginning to gear up for his return to school on January 5th. I have talked to his teacher and we have come up with a few things to help with the transition. Hopefully it will go smoothly and he will really enjoy it. I know it will be good for him to have some time with kids his age again and really to have some time away from his big brother. Max tends to be a bit controlling of little Alex so, being able to make some decisions on his own will be good for him again! Ellee is keeping us all laughing still, all the time. She is definitely exerting her two year old independence these days and showing us her personality more and more all the time. She loves to read books, sing and dance and spends most of her time looking at books or watching a couple of favorite videos she has of kids singing children's songs. She knows all the words and sings right along with them. She has already picked up a couple of Christmas songs, Rudolph and Frosty and her new favorite dance is the Hokey Pokey. She is a total joy!

We definitely have moments of frustration and boredom around here but, overall we have found ways to keep busy here at home and have enjoyed our extra time to just hang out together. I still love that I have the time to sit down and play a board game with the kids, to take a walk together each day with Spud or to read books together in front of the Christmas tree. This is something that I don't want to lose as we transition back to reality this spring so, I am going to make it a priority to find this time still, despite the craziness of life in the real world.

I wanted to also take the opportunity to thank my mom's good friend, Carolyn Maffeo and her nephew, Wilson, for helping Max get a very special surprise a few weeks ago from one of his favorite NBA players, Kevin Durant. Wilson works for the Oklahoma Thunder and Max and Carolyn had discussed this a few months ago. Max had told Carolyn about Kevin Durant and how much he liked him and thought he was just an incredible player. So, Carolyn talked to Wilson about Max, who in turn talked to Kevin and, low and behold, Carolyn showed up at our house a few weeks ago with an amazing pair of Kevin Durant's specially made Nikes - size 18!!!!!!! Max LOVES them and proudly shows them to everyone who visits us. You can see them on Max's little feet in the picture. We are hopeful that one day he will actually grow into them and wear them in one of his NBA games! ;) Thank you so much Carolyn, Wilson and Kevin!!! We have some more thank-you's coming your way too!

I am thrilled to report that Max's Meals is off to a fantastic start! We have gotten a wonderful caterer and friend of my mom's to volunteer to provide a Christmas Eve meal to all of A5 down at the Hospital! We could not be happier about this and are really looking forward to helping out with the dinner on Christmas Eve. It is like a dream come true for me that this is becoming a reality. I have wanted to do something since we were inpatient and I learned of the struggles so many families have down there so, the fact that it is going to happen and that we are going to be able to begin to give back already is just the greatest gift I could ever receive! The hospital was equally excited and is hopeful that we will be able to provide meals on an ongoing basis. They know how much they are appreciated by the families and how much it means to these people just to know that someone is thinking of them. I am beginning to try to think of ways to raise some substantial funds for Max's Meals through grants or fundraisers but, in the meantime, I would LOVE any support that any of you would like to provide through financial donations. You can send me a check made out to Max's Meals or give a donation at any Fifth Third bank here in Cincinnati. Thank you so much to those of you that have already supported our new adventure! We are looking forward to posting more and more good news about the success of Max's Meals!

As you can tell from the post, things around the Meyer household are good...really good. We continue to pray daily for Max's healing and ask for good health, strength and happiness for all of us. We definitely feel like our prayers are being answered and we are eternally grateful for that. Matt and I have said several times lately that we just cannot believe or underestimate how blessed we have been throughout this adventure. We are coming up on a year from when it all began now (Jan. 12, 2009) and it seems hard to believe that it has been that long. As we look at pictures from last Christmas, we get the chills, realizing that we had no idea what lay ahead of us. I think that those pictures will always be good reminders of what can be in life and how important it is to live in the moment. You just never know what lies ahead. We are extremely grateful that our journey has gone as smoothly as it has and that we have witnessed such a miracle in our lifetime.

Many of our BMT friends continue to have difficult struggles and challenges. We ask for your continued thoughts and prayers for Ethan (http://www.caringbridge.org/visit/ethanhenry), Preston (http://www.caringbridge.org/visit/prestonsnead), Brayton (http://www.caringbridge.org/visit/braytonmartin) and Matthew (https://www.carepages.com/carepages/babyandrewakin). We know how difficult this journey is and we also know how helpful and comforting it is to know that people are thinking of and praying for you...just like all of you have done for us for all these months.

Thanks for your continued support and love. More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)