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.

Friday, February 8, 2013

GVHD and More Blood

Pathology confirmed today that Alice indeed has Graft Vs. Host Disease.  Her gut needs to rest completely.  No more watery apple juice and chicken broth.  Before the doctors delivered the news of no liquids, Alice said to me,  "Mom, I don't think I should eat anymore."  Then she looked up to her TPN bag hanging on the IV pole and said, "That can be my apple juice."  TPN is yellow.  I said, "You are right Alice, your tube is happy to have apple juice and not your tummy."

Still Alice was sad and upset when the doctors said no more clear liquids, however, she managed well enough.  Maybe our previous conversation helped her accept the news more easily.

She received more blood today.

Most likely she will stay at least another two weeks to ensure her gut heals properly.  Sadly she will need to stay on immune suppressants much longer now.  It will be a while before we taper her again.  Possibly two years before she is off immune suppressants.  At that point if she rejects again we will consider transplant over again.  Obviously we hope that her body will be happy with its new marrow by then; we still feel good about her transplant (donor marrow).

News flash--The whole warm antibody thing was inaccurately communicated.  Apparently she does not have a warm antibody detected.  This is big news and good news.  Basically this simplifies things more.  The doctors are starting to feel like they have a better grip on Alice's situation.  Likely her blood lines are all attached to the GVHD process and once it is under control we assume she won't need more transfusions.

Alice and I had fun today making many many Valentines.  It has saved us from being overly bored or watching too many movies.  Uncle Josh came to visit again and went home with a Valentine for him and one for McKenzie with diamond rings to go with it.

We changed Alice's dressing today and she was given Hello Kitty slippers for being so brave.  She was very happy about that.  All in all she is in good spirits, happy, and sweet.  I will say, if you want to see her in a bad mood   tell her that you need to take her blood pressure.  For some reason Alice has decided she no longer likes to cooperate when having her blood pressure checked.

Alice gets to have another sleepover with Aunt Amber tonight....FUN!

Natalie called me today and was so excited she could hardly talk.  She kept saying, "I got a receipt, I got a receipt...over and over."  I was so confused as to what she was talking about.  Finally she slowed down and told me that she waited in the line at the dollar store all by herself, paid for her item, and received the actual receipt in her own hand.  She felt so grown up and excited.  She had bought a Valentine for Alice.  Went home and wrapped it up with ribbons.  What a fun moment in life; such simple things as this creates mountains of maturity.


IV bags, IV bags, and IV bags....always something running.

Natalie found the cutest elephant book at parent teacher conference.  When we came home I found her reading it to her elephant friends.  She was determined to find an elephant book at the school book fair.  This was more important than visiting with the teachers...I am so glad she found it.
Nothing makes Natalie more upset than when Matthew mistreats her elephants.  He thinks it's funny--teasing is the fastest way to sour a moment around here.

1 comment:

  1. I am so sorry! BUT atleast you have an answer! Emily is having surgery on Monday morning...if it isn't too early I will stop by. She has to get tubes in again so it's a quick one...I wish you all the best!