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 10, 2012

Day 24 Alice--Day 51 Natalie

I'm sitting here next to Alice's bed watching her sleep. I keep an eye on her heart it reaches 175+ I will push her button for more morphine. Within 10 minutes her heart rate will slow a little as her body feels a titch of relief from the pain. Wow, this has been a struggle for her little body. She's hanging in there with all her might.
Alice's breathing/airways have suffered more than we had imagined. Natalie did very well considering the circumstances. Her determination may have played a big role in her recovery. She had a better understanding of what to expect than Alice has. Natalie also received sibling marrow.
Sweet Alice is just too little to understand what is happening. But she is a fighter, and she will press on.
Yesterday the lab called to confirm that Alice's CMV (cytomegalovirus or common cold virus) tests came back positive. She was positive for CMV prior to transplant, but apparently her levels are higher due to being immune suppressed.
Alice's white count is rising, however, no ANC. The considerations are that her body is being suppressed due to the virus and/or the white cells are being used to fight CMV and cannot mature into neutrophils enough to engraft. Therefore, the doctors added a new medication called Foscarnet which should slow the CMV and allow her body to engraft. Natalie required this same treatment. It is a common thing in transplant patients.
We will try not to be overly concerned at this point, unless of course we do not see improvement in the next few days.
Today Alice has wanted to drink lots and lots of water. That is great, however, she really hasn't kept any of it down. At least she is trying. Yesterday I ordered her some rice and toast. She ate some rice (maybe 20 grains) but it was something. She shared some with her friend Katie one grain at a time. Katie works here at the hospital and visits on occasion.
Physical therapy resulted in the therapist holding Alice in her lap because she was too tired and weak to play. She turned down the opportunity to bowl...soon enough she will be ready to knock the pins down again. Although, she will never turn down a foot rub. When she wants her feet rubbed she will pull them out from the blanket and point to them.
On the other hand, Natalie is home keeping everyone on their toes...we can hardly keep up with all the games and fun. :) She keeps busy, and loving every minute of it. Natalie walks around the house all day with a little smirk on her face because she is so happy to be home and feeling better.


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  2. You don't know me, but I just wanted to let you know that your whole family are in my constant thoughts and prayers. I look for an update daily, praying for good news. Thank you for keeping all of us (including some of us whom you have never met) updated.
    Meichelle Johnson

  3. By the end of this, I think you guys should each be awarded an MD. You know as much as some of the doctors, I'd wager.