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.

Sunday, December 25, 2011

Day Plus 3 and Christmas Eve

Merry Christmas Eve to all!

Natalie, Tyler, Evie and I are spending the night together. Evie is sleeping in the bathroom in her mini pack n' play. :) Natalie in her hospital bed, Tyler in the fold out chair bed, and I curled up in a ball at the bottom of Natalie's bed...hmm. We will see how long that lasts. Actually I do sleep quite well in small spaces, by morning all my children are in my bed lying every direction. I've learned to find sleep all sorts of funny ways over the years. Tyler, on the other hand already has plans to find an empty couch on the 2nd floor somewhere. We are pros when it comes to finding a place to sleep in this hospital. We know all the couches, chairs, sleep rooms, etc.
Truly it will be a memorable Christmas.

Tyler and Natalie have been reading all day and having a wonderful time. When I arrived they were watching the first Harry Potter movie. They just finished the first book.

The nurse has reminded Natalie that Santa comes to the hospital too. She was concerned that the hospital does not have a chimney...but they do have a helicopter landing pad just above our room. That sounds even better.

Today she has been nauseous again, she is receiving a medication called methotrexate, for clean up of any lasting T cells or B cells. It is a chemo, which will also help prevent graft vs. host disease. She finished the main chemo therapy, but this is an extra medication for post transplant to ensure that her body won't reject the new marrow.

I find it a bit troubling when the nurses are required to wear special thick purple gloves when administering the chemo chemicals, in the event that any of it touches their skin, yet it goes through a direct line by the ounces into my child's little body. It truly is one thing to imagine, yet another to actually watch. This was a hard realization to swallow, thus we are so thankful for the miracle of new marrow for her body, that can replenish all that has been taken.

Natalie was able to Skype to family again, and what a highlight this was. When Natalie saw the picture below she just giggled, it was fun for her to see so many bawled heads.

Natalie's Uncles and Cousins...and Matthew!

More Uncles and Cousins. :)

Wow, what a good looking bunch of guys!

Thank you to so many for making Natalie's life that much sweeter.
We have been blessed so much...Santa will be coming this year for our children. This sweet blessing was something Tyler and I were not able to accomplish without others.



  1. We love you guys. I'm so glad that you all got to spend Christmas Eve together. I noticed that Josh and Matthew had shaved heads at Sacrament Meeting today. You really have the best family in the world. Thanks for keeping us all updated.

  2. Merry Christmas Fish family!! We are so glad she is doing well thus far. How fun to spend a night together in the hospital - even if it was a little crowded! I saw Jake at church today and I was touched to see his head. What great uncles and cousins and brother to support her like that!

  3. Ok, I am finally getting updated! Tyler & Lisy, I am going to share a secret with you that I discovered on one of my MANY LOOONG nights in PCMC. Finding places to sleep is not always easy. Especially the comfortable places!

    Go to the second floor same day surgery waiting room. No one is there after hours. Behind the desk there is a consultation room. Slip in there, pull the recliner out into a bed, lock the door, turn off the light and enjoy the best, undisturbed sleep you will find in that whole place! :) There is a little bathroom across the hall. I was up and out of there by about 7am and well rested....which is a big big deal when you are dealing with anything there! :)