We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.
Wednesday, December 11, 2013
Here through Christmas, but good news.
Great news for Alice.
The tests came back negative for GVH and CMV in her organs. Such a relief, we
can now focus on her shingles virus and CMV in her blood. She will receive a
steady dose of anti-viral medicine. The trade off will be that it will cause her
counts to go down. It will still be a difficult recovery but a more possible
recovery none the less. We will be here for at least a couple weeks, which puts
us here through Christmas. That part is a bummer for sure, but it still feels
better to know that the situation could have been worse. Her rash has been
progressing and her counts dropping, but that is to be expected for now. She
will probably need blood tomorrow. In terms of her recovery it has been
necessary to take a step back in order to move forward again.