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, February 12, 2013

Platelets and Advancing Diet...School?

Yesterday Alice received more platelets and was able to advance her diet to chicken broth and minimal watered down apple juice.  So far so good.  She has a chart on the board showing what is allowed to have and at what time.  The clock is just above it.  By the time we finish our stay here she will be a wiz at reading charts and telling time.  She has four puzzles, each 24 pieces, she has them down.  She can finish a puzzle in record time without help.  There are some advantages to sitting around all day.

She has good spirits and is starting to put on more weight...we are happy to see her feeling better and looking more healthy.  Her gut is beginning to heal as the diarrhea has stopped.

She wanted more apple juice so bad...she said to me, "Mom, but I will have gluten free apple juice", hoping that would make it okay.

The doctors want to preform another bone marrow biopsy soon to get a better idea of what is happening in her marrow.  Possibly they will see something helpful and possibly they will not.

Alice is such a delight to be with.  I love my time at the hospital with her.  Still not sure how long we will be here.

While I came to switch places with Tyler, our neighbors/friends kept the other children.  Tyler and I were able to grab dinner together in the cafeteria, believe it or not they have the best onion rings...well we don't eat   at too many other places so the competition isn't too stiff.  Still, I would say they are Yummy!  I think I'm going to get some more before they close...onion rings before bed can't be all bad. ;)  I used to eat my Grandma's Swiss cookies in bed all the time, could that be why I always had so many cavities...hmm?


Just happy

Shhhh......don't tell anybody!   Most likely in less than two weeks from now the doctors will give  Natalie the green light to return to school, she was told that she could go back in January for the past year, recently when she learned that it was February she was crushed and heart broken.  Tyler and I decided that her emotional health is as critical as her physical health and made the decision to let her go to school.  Her first day back was today and she only went half day.  The whole class was thrilled to see her, she had instant friends and willing classmates to show her around.  She may not be there full day for a while and might even miss a lot still, but at least she had this moment to be a part of something she has wished for, for a long time.  The doctors might say differently, however, we will cross that bridge when it comes.

She had her backpack on at least two hours before it was time to go.

Okay, I really dislike these carts for two reasons...they are full of germs and terribly difficult to drive.  I never let my kids ride in them.  Blair and Evie wanted it so bad, I gave in.  I used at least 6 sanitizing wipes to clean it.  Stores should love me because I clean all their carts like they are brand new...and often I bring my own wipes.  Well anyway, Blair and Evie must have thought they were in Disneyland.


  1. YAHOO! School...don't worry, we took Emily before they gave us the green light too. They shook their heads and said she would get sick. I finally just told them if we needed to, we would pull her out...she did fabulous! Congratulations Natalie! and CONGRATULATIONS Alice! We had so much fun seeing her the other can you NOT love that face?!!! Enjoy the time together...and of course, the onion rings!

  2. How wonderful that Natalie is back at school! My girls will be so excited to hear it. They always remember her and Alice in their prayers. We love you all very much.

  3. Yay to school!!! My heart breaks that these sweet littles have so much knowledge at such a young age. They are surely wise beyond their years.
    I hope you have a blessed w/e!