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.

Saturday, July 21, 2012

Graft vs. Host Disease

Day 213 Natalie, Day 186 Alice 

It has been a discouraging day for us.  Due to Alice's scope looking healthy and good we were hopeful that pathology would say that she does not have GVHD.  When Dr. Boyer came in to see Alice on rounds, he was optimistic that she would be clear of GVHD.  A couple hours later he came in to deliver the news we were hoping not to hear.  She has a pathology grade 2/3 graft vs. host, which is considered advanced, however, in a clinical setting she shows less severe signs than the results pathology indicated.  Basically it means that her body is managing the GVHD better than what her labs indicate.

They feel the reason she has GVHD is because of the rapid tapper of the anti-rejection medication. It has been very tricky with Alice, the doctors felt they didn't have a choice regarding her tapper because she was threatening to loose the graft.  Her total body chimerism is down in the 40 percentile currently.  It's difficult to understand what her body is doing.  Normally you don't see GVHD until the chimerism is almost all donor.  Alice is not following the rule book and it's puzzling the doctors.  The treatment for GVHD is adding immune suppressants, such as steroids and increasing her anti-rejection medication called cyclosporine.  This is one giant step backward in her recovery (almost two months worth) and adding a complicated twist.  Her graft will become even more fragile with the added immune suppressants.

Tyler and I are having a hard time sorting out our feelings, yet we feel hope that she will pull through...if the graft is lost, the thought of repeating transplant is overwhelming...especially in her fragile condition.  Alice is a strong girl and will never give up easily...nor will we.

It's interesting how we naturally as human beings find something hopeful to hang on to when disheartening news comes our way.  Quickly, we begin looking at all the advantages we have in our court.  Her situation could be much worse, although we are concerned we feel that she has many good things going for her.

If anything, sometimes all you have to hang on to is hope, faith, and prayers.

When I tucked Natalie into her bed tonight she willingly and so easily put on her nasal cannula, and peacefully went to sleep....just one more thing to be thankful for.  What a sweet thing that was for me.

Lisy


2 comments:

  1. Oh how sorry I am to hear this news! You guys are going through such crazy times! Prayers are coming your way from EVERYWHERE!!! Hopefully sweet Alice will feel better soon!

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  2. You don't know me but I saw your blog posted by a friend and have been following since the girls were getting ready for their transplants. I am amazed and inspired by your love and strength and faith through all of this. I have been and continue to pray for you and your family. I am sorry to hear of Alice's new diagnosis. I wish that it wasn't so but if anyone can fight through this it's little Alice and your family and I know you will all be stronger for it.

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