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.

Wednesday, January 11, 2012

Natalie Continues to improve and Alice's treatment moves forward


Natalie's ANC count reached 1300 today. It is good to hear each morning from the doctors how pleased they are with her progress. They decided to take her off of the bone marrow booster medicine today since she seems to be producing enough on her own now. It was the doctor's thought that this particular medicine was the cause of her nausea and aches. We will know tomorrow if the retraction of the treatment has helped her feel better. If it does not help, further tests to see if she has contracted graft vs. host will need to be implicated.

Natalie did find some time today to pull more shenanigans with a whoopee cushion on a nurse. She gets the biggest kick out of jokes. She also painted turtles with magnets on them to give to those who come to visit her.

Alice seems to be having a ball playing with all the toys she can get her hands on. She also insists that the "Backyardigans" are to be played all the day long. The Backyardigans have worn me out. Tomorrow however she starts her ATG (rabbit anti-bodies) which brings on the nausea and achy symptoms.


Here is fun video of the two chatting over Skype. This activity happens several times a day between them.

Tyler

Posted by at 11:22 PM

3 comments:

  1. StrongsJanuary 12, 2012 at 8:28 AM

    Holy smokes Natalie...1300! That is awesome! Now if you can just get feeling good too...that would be even better. We so love when there are videos posted. The whole family gathers around and we watch and rewatch them. It almost makes it feel like we got to visit you...which is something we really wish we could do. I am so glad that Alice has you and the backyardigans to help her feel better. Keep improving!
    We love you all- The Strongs

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  2. AnnaJanuary 12, 2012 at 11:18 AM

    How fun that you sweet girls get to see each other. You are going to have a life-long bond, I'm sure. Best of luck and prayers for everything to keep improving.

    ReplyDelete
  3. TaraJanuary 12, 2012 at 11:28 AM

    Wow Natalie! We are so excited your numbers are getting so high. I bet Alice is so grateful to have you so close to her. What a good big sister you are. We wish you luck with Alice as things will start to get more difficult. We are praying for both girls every day. We love you all!

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