Sunday, May 2, 2010

Day +396: Return to Reality

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

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

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

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

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

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