The Natalie & Alice Fish Story

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.

Tuesday, December 10, 2013

December 10

It has been a tough few days for Alice. Most of her time has been spent muscling through the uncomfortable pain on the left side of her face and leg. Her vomiting was so consistent that I could plan on every half hour to be by her side with a pink bucket to catch whatever came up. Sometimes there would be blood in the mix and others only bile. Understandably she has no apatite and certainly does not want anything to do with anyone touching her. It is so sad to see her this way. I can tell the doctors and nurses are more concerned too because they usually see an Alice who is excited to be in the hospital. We don’t know what is happening to her. Both Lisy and I are of the opinion that GVH has set in. Nevertheless that doesn’t explain the pain she is having in on her left side. 

Alice’s face has broken out in what seems to be a small rash on her left side. From her bottom lip up to the left side of her head are red dots. I called the doctors in to show them the new discovery and it became more clear to them why she the pain exists on her left side. Shingles. I’ve never had shingles before, but our Matthew has. I recall him complaining of pain in his back for a couple days before the rash presented itself on his leg. The doctors reported that Alice’s rash placement is not common. Usually the symptom is pain in the back and rash on the legs, shoulders or back.

 Another bit of bad news is that Alice’s tests have shown that she has CMV in her blood. The CMV is very concerning because of the possibility of it making its way into her organs. In addition, we have still not received word on whether she has GVH. If the tests come back stating she in fact does have GVH and CMV in her organs the doctors will have to play a difficult game of balancing the way they will treat her. When fighting GVH an increase of steroids is the path. When fighting CMV and the Shingles virus an increase in anti-viral medicine is the path. The balance game comes into play with how each of the paths cause the other to react. An increase in steroids will suppress her immune system which will slow down GVH, but allow the Shingles virus and CMV to run amok. An increase in anti-viral medicine and decrease in steroids will allow the GVH to progress. It would be a difficult situation that could turn in to a more difficult circumstance. We should know the results of the biopsy by tomorrow. 


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