Day +94: Riding the Rollercoaster of the Bone Marrow Transplant Process

Happy 4th of July to everyone! I hope you're all enjoying a fun summer day of cookouts and fireworks, etc. Unfortunately, it is rainy here in Cincy so we are certain it is putting a damper on the festivities around town. We were able to take in the parade here in Anderson Township this morning which was really enjoyable. Max got in the car to go home and the first words out of his mouth were, "wow, that was fun!" Made our day, to say the least!

We've had another good week but, again, not without its worry and rollercoaster ups and downs. We were down to the hospital for our routine Tuesday and Friday visits, although we were moved up to Thursday because of the Holiday for the 4th on Friday. Overall, things remain good with Max. We did get some especially good news...the neutrafil antibodies that they suspected may be causing his ANC to go lower are not there. In addition, his ANC seems to be stabilizing over the last two weeks again so, we are thankful that one issue appears to be resolved as of now. Unfortunately, we did get some concerning news on Thursday, although the doctors and nurses are telling us it's fairly typical and we shouldn't worry. Max's engraftment percentage (the percent of blood cells being produced by Ellee's marrow vs. Max's own tiny bit that was left) which had been bouncing around between 96 and 99%, has now fallen down to 90%. Our concern, which the doctor's share, is that it fell pretty rapidly this past week. At this point, they are going to keep a close eye on things and see what happens this week. As Dr. Joshi, one of our favorite outpatient BMT doctors said, "We don't have a silver bullet to ensure that we got all the cells out of Max's body that we wanted to before the transplant, we only have shot guns (referring to the chemotherapy that was used to prepare Max for transplant). We used those shot guns and, unfortunately, we didn't get all the cells that we would have liked to. Thus, there is a bit of a tug of war going on in Max's body now between Ellee's marrow and his own. What we need to try to do over the next few weeks is find just the right balance with his Cyclosporine level (the immune suppression drug he is on) to enable Ellee's marrow to mature and take over, without allowing Max's marrow to get stronger or causing him graft vs. host complications, if possible."

Not what I wanted to hear, to say the least. My mind immediately went to, "oh, no...what if this doesn't work and we have to do this over again. That would be my worst nitemare. I can't stand to see Max or Ellee go through anything more!" Thus, the roller coaster ride of the BMT process. It's tough. We are so thankful for Max's progress so far and hope and pray that this too shall pass...but, it's impossible not to worry. We try everyday to turn our worry into prayer or some other positive energy but, it's been tough. We know that they have many things that they can do to attempt to save the graft of Ellee's marrow in Max but, we just hope and pray that they won't have to do any of them. We hope and pray that the issue will resolve itself with time. Only time will tell.

We have done our best to not focus on this situation this weekend and to enjoy some 4th of July fun with our families. We went to a really fun cookout last night at Matt's sister, Monica's house and Max and Alex really enjoyed playing with their cousins, Will, Ben and Jacob. Cousin Andrew was sick so he didn't make it. We have also enjoyed hanging out with my brother, Patrick this past week. As I've mentioned previously, we hadn't seen him in over a year and it's been great to have time to just hang out and play with him (he's in the picture with the boys). My family has been on vacation this past week out west. My mom and dad are with my brother, Mike and his family in Jackson Hole, Wyoming and my sister, Kim is with her family in Thompson Falls, Montana visiting her husband's family. We have all missed each other this week. Being apart is tough right now, even though they need to take vacations and continue on with life. It's hard to be apart...everyone worries and thinks about us back here at home. They know that we would love to be vacationing too! Just another part of the rollercoaster ride. One second we are so thankful to be where we are and to have Max doing as well as he is...the next second we are feeling sorry for ourselves and thinking about how much fun this summer would have been. But, overall, we know that this is temporary and that with time we will be able to be a family again outside of this house and enjoy the wonders that life has to offer.

I don't mean to be negative today, I just want to be somewhat realistic with all of you loyal followers of this marathon adventure. As well as it's gone for Max, it has not been easy. We know that you all know that and we are sustained by your continued support, prayers and encouragement. We know that we need to journey on, taking one day at a time and doing our best to remain focused on the positives, with the hope that Max will be healed soon and able to return to the full life of a seven/eight year old boy.

More soon...happy 4th!

Peace and love,

Kristi (and Matt, Max, Alex and Ellee)