Day +573: Good Stuff!

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!

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

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

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!!

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!

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!!!

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)