Monday, June 29, 2009

Day +89: Very, Very Thankful for Yet Another Great Week

It's day +89 today and we could not feel more grateful for the progress that Max is making and for his current state of health! He continues to get stronger and more energetic everyday and his blood counts continue to get better and better all the time. The ANC or infection fighting white cell count that I was concerned about last week when I wrote has been showing some improvement. As of Friday it was up around 1100 which is almost normal (1500 is normal) and the doctor's were hoping that was a sign that maybe Max's body was already fixing the potential antibody issue that they thought might be occurring. Only time will tell for sure. We go in again tomorrow for a lab visit and will know where his ANC is sometime tomorrow afternoon. If it has continued to rise or stayed steady, the hope is that we will not have to do anything and the antibody issue that they thought may have existed will be resolved. I'll keep you posted. His red cells and platelets have remained stable at relatively good levels (considering he is still under immune suppression medication to help prevent graft vs. host disease) and that is a wonderful sign that Ellee's marrow is working as intended in his body.

We could not be more grateful for all of this. We have kept in touch with many of the families that we met while we were inpatient in the Bone Marrow Transplant (BMT) unit and a large portion of them are dealing with much, much worse at this point. Many of their children are struggling with engraftment of the donor marrow, viruses and other setbacks that have made the transplant process extremely difficult and unimaginably scary for all of them. We think of these families often and pray for them everyday, hoping that things will turn around for all of them and that they will soon be experiencing the healing that we have seen with Max. I truly believe that we have been brought through this process for a higher purpose and I believe that even more strongly when I realize over and over again how blessed we have been in this situation. It makes me determined to "pay it forward" in the future and I am contemplating the best ways to do this everyday. I know that I am going to do a couple of things regularly, once we are through the healing process a bit more and I am able to get out a little easier. I plan to donate blood and/or platelets as often as I can and I plan to make meals for the families in the BMT unit (I am currently trying to determine how to get this "legally" done on a regular basis). My eyes have been opened to a world that I never knew existed and I am forever changed by this experience and feel highly motivated to do something to help ease the suffering of so many others that I have seen.

With every passing day, Max's life gets closer and closer to the "normal" that we knew before. He has been playing with his small group of buddies often lately and totally enjoying it! I have included a picture from last Thursday of Max and Alex with their buddies, Raad and Giana from down the street and their cousin, Will. We have also been getting out quite a bit more often lately and it has felt so good to all of us! Last Friday we went up to West Chester (north of Cincy) to visit Matt's sister, Molly and her boys, Andrew and Jacob. It was such a treat to be able to get out of the house and play somewhere different, although I have to say that we all came home exhausted! It's so funny how something simple like that tires us all out these days. We used to do that without even thinking twice about it! Last Friday evening, the boys were surprised to learn that Uncle Patrick was home from the Bahamas! We enjoyed a wonderful, very normal feeling evening at my mom and dad's house with all the Sherwin family cousins (Heidi, my brother's wife and Susie, my brother's daughter were also in town from West Virginia). Saturday morning we headed up to the Farmers Market here in Anderson (our area of Cincy) to take in a benefit concert by Kevin Sharp (a county singer and cancer survivor) that donated money to the Children's Hospital Music Therapy program, which Max took part in while he was there and thoroughly enjoyed! We kept Max in the shade and had him wear his mask and stay back from the other people that were there. Not quite "normal" but, it was great to get out! Finally, we had a very busy day yesterday, Sunday. Max and Alex got to go to a birthday party for a friend of Max's at a local park and Max even did a little bit of scootering at the skate park there! Dad made sure to minimize his sun exposure and keep a mask on him the whole time but, he really enjoyed it. HUGE steps toward feeling "back to normal" for Maxer! In the afternoon, cousin Will came over and did the slip n'slide with the boys. Last night we went over to Matt's mom's for dinner to celebrate the engagement of Matt's sister, Sarah to her boyfriend, Ryan (Max, Alex and Ellee already call him "Uncle Ryan" but now it's official)! A very busy few days for us, to say the least! So, today we are taking it easy and having a nice relaxing movie watching afternoon! We all needed it! Max was really worn out last night and his body was telling him that he should slow down for a bit. His legs were quite sore but, his smile never stopped.

The little things that we took for granted before are so huge to us now. The new perspective that we have on life is wonderful and, again, we are just so grateful. We can't explain why we have been so blessed in this process, we can only be thankful for it. We intend to do all we can to remember these blessings and do our best to make a difference for others in the future.

Thanks for continuing in this marathon journey with us. More soon...

Peace and love,

Kristi (and Matt, Max, Alex and Ellee)


  1. "When normal becomes extraordinary." Godspeed.

  2. I previously sent this via email to Kristi and her family. She gave her permission to publish it here as a comment. A part of me doesn't want to put it out there as it might come across as a bit pious on my part - not my intention, as this was written on the fly as a public comment.

    I admire you for your traveling along your journey with your head held high. Here is the rest of my comment that I wrote, but didn't want to offend you by hijacking your blog:

    "When normal becomes extraordinary." I think that I'm paraphrasing your words, but I quite like them.

    The hardest part of the journey is nearly complete . . . but the most challenging part is just beginning. You've been to the brink and you've looked over the edge and you now know what the bottom looks like and feels like - in a way that is only yours.

    The challenge is (a) to never, ever forget (b) to educate others to what you've seen and how its improved your life and (c) to be able to temporarily wear the shoes of others that weren't able to return from the brink. Sounds like you're already on your way - good for you and good for others.

    "When normal becomes extraordinary." Godspeed.


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