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 3, 2012

Day 17--Alice

Alice spent most of the day awake and talking. This is BIG. She must be feeling a little better. We hope she is turning the corner. Her white counts came up more today. We think she should engraft in the next few days. This is Wonderful. The physical therapist came to work with her today. She was too weak to bowl standing up. However, she must have bowled for an hour on the floor. Another infusion of platelets today.
Her breathing has improved some, still vomiting a lot. She gets to see Mom tomorrow!
Below is a follow up story KSL did on the girls.
Posted by at 9:42 PM

2 comments:

  1. ValerieFebruary 4, 2012 at 6:40 AM

    Dear Fish family,
    I started... and finished reading your blog yesterday, I just couldn't stop!
    I saw my father-in-law go through stem cells transplant 5 years ago so I can relate to what you are going through... to some extent. I have a 3 years old daughter and am pregnant with my 2nd baby. I cried a lot through my reading...

    To Tyler and Lisy : I just can't imagine what you are living... no child should be so sick and go through all that... but two of your children at the same time... I admire you so much for being there for all of your children through this and never letting them down. I will think of you and pray for you everyday.

    To Natalie : When I first saw a picture of you before the transplant, I thought: what a beautiful girl! Well, you are a thousand times more beautiful today!!! Being SO strong and SO brave shows in your face and in what emanates from you. You are a hero Natalie, a true hero! I might not know you personnally, but I love and admire you with all my heart!

    To Alice : You are so sweet little Alice, you prove that being strong and brave has nothing to do with being big... maybe you won't remember much of this when you grow up, but a lot of people will remember your courage and your strenght. You are a little sunshine, I am so happy you go through the transplant at a young age, you will fast live a wonderful healthy life! I love you and admire you with all my heart too, and since you are still in the roughest part, I will say a special prayer especially for you everyday until you go back home feeling well!

    To Blair : You are a true hero too! You gave your sister the most precious thing you could give anyone... It took you lots of courage too, I'm sure it wasn't easy and it must have been scary sometimes! I thank you personnally for giving your marrow to your sister.

    To Matthew : You are no less a hero than anyone in your family. Your parents said you were holding everybody together. You made a lot of sacrifices for your sisters, and it's not over yet... I really admire your courage for being the big brother who is there for everyone. They will always be so proud of you and so grateful for you always being there when they need it the most...

    Big kisses to all the family, I will follow your blog and pray for you everyday!
    Valérie

    ReplyDelete
  2. AnnaFebruary 4, 2012 at 5:49 PM

    I'm sure Alice is a pro bowler by now. She is such a sweet little one. I'm so glad she's starting to feel better!

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