Posted 4 hours ago
The last 24 hours are difficult to share and full of contrasts…highs and lows. I’ll start with some news we got this afternoon. Maddie’s test results from this week’s blood test are in and they show that only 5.7% of her bone marrow cells come from the cord blood donor and the rest are her old cells returning. This is a marked drop from last week’s numbers and it puts her right on the border of possible transplant failure. According to our doctors, studies have shown that when that number gets below 5%, there are is no chance of recovery and the process is considered to be officially unsuccessful.
Maddie is scheduled to have another bone marrow procedure done Friday morning, in order to discover a more definitive prognosis. The results from that won’t be in until early next week. If this transplant does not work, there is one last matching cord blood donor that Maddie can use for a second attempt at transplant. This means that Maddie would basically start the whole process over as soon as her body is ready again. The second cord blood matches Maddie slightly less than the first one did. The team is searching the international database to see if any new matches might be found, but nothing has surfaced so far.
In contrast to all of this dire news, the short term issues of Maddie’s health have been improving. Her fevers have been gone for a few days now. She has perked up and felt a lot better recently. Her white blood cell count has been climbing steadily, but this good progress could be coming from old cells inveterating. However, this temporary status has taken care of all known infection in her body for the time being. This allowed for a very important surprise yesterday afternoon. The doctor permitted a one-time 30 minute visit with Sydney in the room! They were not allowed to have much physical contact and they both wore masks, but the time together was magical. They laughed, talked, played and walked around the room together. The effect on Maddie was an infusion of joy and energy. Her sister blabbed on and on about it in the car afterwards, as well, saying, “I see Baddie!” As parents, our hearts experienced the bitter sweet taste of seeing them together for the first time in 40 days, but knowing that this ordeal is far from being over and we simply don’t know how it all will end.
It is a very difficult time right now, because the prospect of transplant failure means the inevitable return of cancer. Yet, at the same time, Maddie physically looks and feels the best that she has been since late May. We are trying our best to not give up hope, but in all honesty, an improved result next week would shock us…a welcome shock, but a shock nevertheless. We are also extremely grateful for the blessings of a sibling visit and less suffering for Maddie these past few days.
Needless to say, we covet your prayers for us.