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.

Monday, March 4, 2013


This morning came fast and early.  I knew this would be the case...It was a late night.  I will say my least favorite part about being here is waking up to the loud scale and vitals at 7:00 a.m.  Truly 7:00 a.m. is not early in the real world, but in the hospital it feels like 4 o'clock in the morning.  For anyone who has spent even one night in the hospital can attest to this.

I've tried to convince the doctors that the weight and vitals can wait.  My petition didn't get very far...of course I knew it wouldn't.  I know they have schedules to follow and decisions to base off this early morning information.  Currently there really isn't a perfect way to please both sides.  I do have a list of ideas/inventions that will make any hospital stay easier and more efficient, inviting a better sleep environment.  All I need now is plenty of spare time to make these ideas realities. Hmmm...oh and I might need some scientists, engineers, medical experts, etc.

Alice's ANC was actually 200 today.  This is great for her.  She received platelets and more Neupogen (and will continue to receive Neupogen each day at home); she will be checked in clinic on Monday, possibly to receive blood.  She came home on an additional antibiotic called Cefepime; while in the hospital she was on Linezolid as well, another antibiotic.

We are so excited that Alice came home today.  As we were driving home she continued to tell me to drive faster because she wants to see her family.  What a sweet thing it is to be all together!

We had an amazing dinner together provided by a sweet neighbor/ward member.  We had a quick family home evening discussing how we need to be more careful with germs now that Alice is more fragile.  The kids have heard this drill one too many times and didn't seem too thrilled about it.  The night ended in front of the T.V. watching Peter Pan, with Natalie cranking the volume up and the rest of us suffering through.  Everyone was fighting over who gets to cuddle with Mom.  Alice had her double pump system running while Evie taunted her with tugging on it.  And all the while Tyler slept through the whole thing.  He managed to be left alone on the couch.  I love my family, even when we are wild and obnoxious.

Welcome Home has been a long month!


Room packed up and ready to go.  She insisted on wearing her Minnie Mouse dress home ("the most beautiful dress she has ever seen"), so I had to go back to the car and get it out of the bags I had previously taken to the car.  It was all worth it.
Why do these masks make children look so cute. 

She was afraid to get cold outside.  It was windy and cold...good idea Alice.
 I had to post this made me laugh so hard.  When I pulled up with Alice from the hospital Tyler was just returning from an errand with the kids.  He pulled Evie out of the car and this is how she was.  I'm still laughing.  Tyler said he was just dropping the kids off somewhere and Evie had no business getting out of the car....thankfully according to the way she was dressed!  Seriously how many Dads can relate to this--and Moms.  I can!


  1. Congratulations!! Your kids are so adorable! I LOVE Alice's smily face she drew :) We are crossing our fingers that this will be a very LONG stay at home! ENJOY!!

  2. Hurray for home, Alice!!!! Evie's pic wins...way to go Tyler :)!!!!

  3. Evie's picture and your story about it made me laugh myself to tears. I am thrilled to see how well Natalie is doing. We will continue to pray for Alice. She is so adorable! We love and miss you!