Wednesday, July 14, 2010

Day +469: A Couple of GREAT Days

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

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

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

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

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

More soon...

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

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