Wednesday, March 10, 2010

Day +343: Looking Back...Moving Forward

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)


  1. Wow, one year! Hopefully the hardest year of your lives is behind you and things will continue to get better and better. Always thinking of you! Jen

  2. Think of you..all the time.. love you all so much...Carolynn and Bob

  3. Looking forward to the one-year anniversary and the one-year celebration. How amazingly flabbergasted are you when you look back and realize that you've been dealing with this - all of this - for over 400 days. On one hand, it is only a little over a year - but when viewed (or when attempting to view) the day-to-day scale, I am sure that it is (literally) incomprehensible. And probably frustrating that words - silly, little words - just won't (can't) do it justice.

    Perseverance - what a great word and retrospectively (always retrospectively) what a great sense of accomplishment. Rock on.


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