Day +1026: Christmas, 10, Day +1000

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!

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!!

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

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

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

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

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)