SCID and Seattle

Post from May 11, 2013

The doctors finally determined what Jordan's issue is, and it isn't great news.  He has Severe Combined Immunodeficiency (SCID), which is what the "boy in the bubble" had in the early 1980's.  Basically, it means the immune system is not functioning properly and Jordan's T and B cells are extremely low.  In fact, he may not have any T cells at all, which would mean he can't fight disease. This is apparently what has been happening--he contracted two nasty viruses and they are taking a toll on his body from day to day. Some days he seems to be doing much better and then the next day he seems to crash because of the viruses.

While I have read that only 1 in 1 million children have this disease, it is visible enough that a lot of genetic research has been done on it, which keeps us hopeful.  The possibility of a future for Jordan, however, is not an easy road. At the very least, the doctors believe he will need a bone marrow transplant, which is why they are sending us up to Seattle Children's Hospital where there is an immunology group.  We have known this for about a week and have been waiting for a space in the ICU at Seattle Children's for several days.  Today we got notified of a space about 10am and we are headed up in just a few hours.

As for the rest of the family, the kids are still in school so I will settle in with Jordan in Seattle and just take it a day at a time. Ryan should be coming up later in the week and bringing the kids the following weekend.  My mother and father are in town as well to help out and everyone in the ward and in our community continues to bless our lives with their kindness and care.

I will add some pictures to this post a little later.