Donor Chosen and Risks Outlined

Meeting day Tuesday wasn’t great.  We heard a lot of what we had heard before, only this time all at once as part of signing consent forms. We consented to let the doctors do whatever they need to for the transplant as well as any emergency that may arise.  We consented to allow several research hospitals to use Jordan’s information and extra specimens for research.  And we consented to all the risks that are inherent in anesthesia, bone marrow transplant, and any surgery including everything from a slight rash to sudden death. 

While sudden death is very unlikely, the doctors informed us that Jordan surviving the next few months is also unlikely.  Since the viruses have spread throughout this liver, lungs, stomach, and bowels, what is likely from a clinical standpoint is that either Jordan’s lungs will inflame so much that they will no longer be able to oxygenate his blood, or his liver will stop functioning.  The lead physician in the meeting made it clear that even with the transplant, it will take a miracle for Jordan to survive long enough for the new T-cells to take effect…; good thing I believe in miracles. And I believe in promises. 

I believe in the Lord’s promise of peace in this world and eternal life (family life) in the world to come.  With literally hundreds of people praying for our family and many fasting as well, we are already feeling a level of peace that is itself a miracle. 

In addition to these meetings, we were informed that Aaron has been selected as the donor.  Michael was originally supposed to be retested yesterday to see if his white blood cell count had increased, but since the doctors didn’t know why it decreased in the first place, they decided that using Michael introduced too much risk of new infection for Jordan.  In our minds we hoped it was Michael but in our hearts we felt it would be Aaron so again this feels right. 

For Aaron’s part, he sailed through another blood draw without a complaint and was elated to get the chance to pee in a cup as Michael had done.  It is never difficult to convince a boy to pee into something new—especially if it is likely too small to actually hit. 

Fortunately, the more we learn about the actual harvesting of the cells from Aaron and infusion into Jordan the less concerned we get about this part of the next several months.  Apparently the harvesting process consists of a general anesthetic for Aaron (that is the scariest part and carries low risk) followed by 2-4 pricks through his skin to reach the bone near the hip on his back side.  The doctors then hit the bone marrow about 20-50 times on each side to get the “juicy” cells they need.  The recovery for Aaron is expected to be 2-3 days of some minor soreness and the procedure itself is only about an hour. 

For Jordan, the infusion process is only about an hour and similar to getting blood so it has a very low risk. The risk for Jordan comes really after the cells are infused and over the next few weeks as follows:

If Jordan gets the T-cells he needs from Aaron that know how to fight the Adenovirus and they choose to aggressively attack the virus, this may be too much for Jordan’s little body to handle and he will likely get much sicker, which could be life threatening.  We would expect to see this in the first 1-2 weeks after the infusion. 

If Jordan doesn’t get the T-cells that know how to fight this virus, Jordan will need to survive another 2-3 months while the T-cells from Aaron mature and train to fight this virus.  The doctors feel it is unlikely (except for that miracle) that Jordan can survive this long without a functional immune system given the fact that his copy numbers (viral particles) with the Adenovirus are already more than 9 million.

If Jordan does get the T-cells he needs and they only mildly attack the virus as we hope and Jordan’s body holds on, he has a 10-15% chance of developing Graft Versus Host Disease (this would be a 30-50% chance if he didn’t have a matched sibling to be the donor so we are very blessed there), which could lead to anything from a rash to death.  The only way to fight Graft Versus Host is to suppress the immune system response through steroids which in Jordan’s case would decrease his new immune system’s ability to fight the viruses. 

If he gets the T-cells he needs and doesn’t develop immediate GVHD, then there is a 50% chance of long term GVHD, which can require 3-4 years of hospitalized therapy (intermittent, not ongoing) and can be fatal. 

SOOO, there is a lot happening that introduces risk, but the doctors are doing all they can to mitigate these risks, and so are we.  For the doctor’s part, to alleviate the likelihood of GVHD since it is especially difficult to fight in Jordan, the doctors will partially suppress his immune system through medication—MMF and Cyclosporine.  These are experimental drugs for this purpose but the other option of killing all T-cells through chemotherapy is too dangerous for Jordan. 

Our part is to continue building a community of faith to strengthen and support our own.