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, December 23, 2011

Day Plus 1 and First Blood Transfusion

This post is a day late, I started it yesterday, so don't be confused about the dates.

December 22
Today was day plus one, yesterday was transplant day zero.  They say Natalie should engraft somewhere near day plus 21.  The preparatory regimen chemo days were negative days counting down to transplant.  We are so glad to be counting up now. :)  Natalie had a good day.  She was able to Skype home a bit.  Natalie received her first blood transfusion today.  She is at the point where they will become more frequent.

They just finished changing the broviac dressing.  This is not a fun thing.  Her skin is tender and a little raw under the tape.  It hurts her to remove the tape, then they have to clean it with alcohol...which stings terribly.  Normally this is only done once a week, but because of all the problems she has had with her old line it was being changed many times.

Blair is well, and feeling so proud of himself.  He is receiving extra special care and enjoying every minute of it.  He is very sore, able to walk (small steps), but it hurts to sit and bend.  His throat is sore from the breathing tube during surgery.  We are so proud of Blair.

I snuck over to Pleasant Grove while Josh waited in the car with Alice and Evie, so I could run in and give Matthew a hug.  I have been missing him badly.  He has been with cousins and uncles, and didn't seem to miss me as much as I was missing him.  He was playing on his cousin's Wii, no wonder he wasn't homesick.

Lisy
Posted by at 10:58 AM

2 comments:

  1. LindaMay 22, 2017 at 4:49 AM

    My prayers are with the kids and I hope that they will get well soon. I cannot imagine pain they are going through, have no words to say here

    ReplyDelete
  2. essay bestMay 24, 2017 at 7:49 AM

    We are hopeful and praying for the good health of this cute baby, I can understand her situation that she is facing. May you will be fine soon dear

    ReplyDelete

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