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.

Tuesday, October 29, 2013

Good News!! Day 12

Tyler called me at home this morning just after I had dropped the kids off at school, I had been up since 4:00 a.m.  I just couldn't sleep so I decided to start my day early, nothing productive came from it, until of course I received Tyler's call delivering the news I so desperately wanted to hear, but surely wasn't expecting so soon.  Alice's ANC is 200 today!!

This is a shock for us and for the doctors.  I wasn't sure if what I was believing was really true, could it be?  It's only day 12 and she is already showing sings of engraftment.  It's possible that she could engraft over the weekend or into the beginning of next week.  This is much sooner than we anticipated.

Honestly I get teary every time I think about it.  I feel like crying really hard because I am so happy and relieved.  The fact that she is already producing white blood cells is huge.  This means sores will begin to heal, even in the next three days we will notice a difference in her pain levels.  If I could describe my feelings right now in a familiar setting, it would be like a child anticipating Christmas morning, or driving into the Disneyland parking lot....times ten.  I am SO EXCITED, We are SO EXCITED!!

I switched places with Tyler today as planned; when I saw the nurse practitioner, I had to ask more questions because I just wanted to talk about the good news in more detail.  Her doctors feel like it's happening so fast because she received a very healthy dose of stem cells from the donor...the donation was considered "packed" with stem cells.

Today was good, despite the fact that Alice spent most of the day grumpy.  Little things were making her mad easily today.  When Irish our nurse came in to tell me that we needed to change her dressing today, I thought, oh my, she is already so upset, this is not going to be good--well Kevin and the Burchalls came to say hello...just in time.  When Alice heard that they had arrived, she requested that Kevin hold her hand during the dressing change.  He told her stories of the crazy Turkey he had growing up, it seemed to work quite well.

She had a lot of fun and even laughed plenty with her changed the rest of the day for the better.  I tried to capture some of the fun in the video.  If you listen carefully she says the word idiot.  She called me a little idiot today.  I was surprised, and I don't think she even knows what it means, she heard it on Despicable Me.  We had a little chat about using better words, but it still gave us a giggle.



Britta, Alena, Seth, Kevin, Lori, Sydney, Alice and Kate.

She sat this way for a while, it was probably just easier to leave the tissue in her nose rather than continue to wipe it...don't we all know what that is like.


  1. Unbelievable!!! We are so happy and excited for all of you. Love and prayers continue here on our end.

  2. Our family is jumping for joy as we read this!! Yay Alice!!!! We will continue to send prayers your way.

  3. I have followed your blog for a very long time and am so happy to hear the wonderful news!!!! More good things are to come :) I do not know you, but I think of your family often :)

  4. Congratulations Fish family!!! Ryan showed signs of engraftment on day 11. I am so happy for you all.

  5. SO EXCITING!!! This is such great news! Alice is SO TOUGH!! YAHOO!! I love the video! Irish is the best!

  6. So glad to hear the terrific news!! I've been following your blog for a long time and glad to hear things are moving along faster for Alice this time!

  7. There's been so many receiving good news today. This just sent me over the edge. Crying with happiness!!! Keep it going Alice!!

  8. So good to hear the great news! Way to go Alice!