A Fighting Spirit

Jordan is a fighter—that much is for sure.  Without a functional immune system and with two nasty viruses in his system, he has managed to grow stronger and fatter.  With one of these, the Adenovirus, spreading in his lungs, he manages to keep breathing on his own.  And with more than half his life in a hospital bed, he manages to keep interacting, smiling, and melting the hearts of the nurses, doctors, and those who love him.    

Today we had to become fighters too.  We were informed this morning that the Adenovirus has spread not only to Jordan's lungs, but to his stomach and his liver.  His liver is expanding and some of the functions the liver provides such as assisting with blood clotting, are starting to weaken.  With the virus in his stomach, Jordan has been throwing up with so much force that blood vessels are exploding in his eyes, leaving him with red eyes and dark rings around the eyes.  To offset this, doctors stopped feeding him through his g-tube and are instead feeding him through an IV for at least the next several days.  Combined with more severe fevers, the doctors expressed worry on their faces that we have not seen before and began discussing the "what if's".  

I remember the "what if" game from grade school.  "What if I had a million dollars?", or "what if I could fly?".  We never practiced the "what if my son was in the hospital fighting a virus and with all the modern medicine and knowledge available there was no way to save him?"  We have to begin this discussion with our children, while at the same time balancing our own hope so as to keep all the positive energy we can.  We certainly have hope in the Lord that the outcome is His will, and we have hope in the future that there is joy there regardless what happens now, but that doesn’t diminish the helplessness we feel.  

For now the doctors are moving ahead with the transplant as quickly as possible without putting Jordan and the donor at any more risk. We have already seen many miracles in this process, including finding out that all 3 of our other sons are a match—not only for the bone marrow, but also blood type.  The statistician in the lab stopped trying to figure out the likelihood of that happening, but needless to say it is extremely unlikely.   For whatever reason having all 3 match was necessary and fit into the plan the Lord has for Jordan and so those prayers were answered and we are very grateful for it.  That means that instead of taking only the match, the doctors are able to test all 3 brothers for the healthiest immune system. 

The other factor in choosing the donor brother is the one that is most likely to have had the Adenovirus since that means the donor brother could provide T-cells that already know how to fight this virus. Jordan needs as much of a head start for these T-cells as possible to give him the best chance to hang on. 

As it turns out, Mikey and Aaron are most likely to have had the Adenovirus and so we figured Michael would be choice; but his white blood count is down due to an unrelated infection he is fighting and that moves Aaron to the front of the line. 

Miracle two is that Aaron agreed to be the donor and go through the blood tests required for donor screening.  As of yesterday, he refused to do another blood test after already giving blood twice in the last week and he threw a major fit the second time.  We talked to him and asked him to help and offered him treats and he said “no, I not doing it” after every attempted bribe.  With all the kids have gone through I put my foot down and told the doctors that we would not force Aaron to go through this because I wasn’t going to hold him down and traumatize another child.  They told us we had 24 hours to decide and that they would use Tyler if needed.  So we prayed that the Lord would teach Aaron and soften his heart so Jordan would have the best chance possible.

This morning I asked Aaron again if he would help and he said, “no”.  Then I got down on a knee and told him, “Jordan needs you.” Aaron looked me in the eye with a somber face and said, “okay Dad, I will do it.” Then he brightened up and added, “I am so excited.”  And he was. He gave blood without complaining and stayed happy about the chance to help his brother.  This truly was a miracle.  (To be fair he was also happy about not going to church which might have helped, since he gets shy about going to a new congregation.)

Now we need just a few more miracles. One to get Jordan through the transplant, one to have his new T-cells fight the viruses without taking too much of a toll on his body, and one to keep his body from rejecting the transplant and causing Graft Versus Host Disease, which can of itself be deadly.  Then perhaps we can consider moving back home to a new “normal”, whatever that will be.