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, October 20, 2013

Methotrexate, Day +3

I had a hard time sleeping last night. When I called to tell Alice and Tyler good night, I could hear Alice crying in the background. She was in pain, and miserable. I started crying myself. Needless to say this is why my night was hard at home. I almost sleep better at the hospital because I am with Alice and know everything going on rather than home wondering. Tyler takes such great care of her; it's really just me feeling away from the scene.

Early this morning Blair woke me to inform me that I promised him I would teach him how to sew something for Alice as we were headed to the hospital that morning to visit and switch places.

We sewed a little rice bag for her so she would be warm.  He wanted to do most of it himself and did a great job.  Matthew made one too. 

We anticipated attending the 30 minute sacrament meeting at the hospital, the children were dressed in their Sunday clothes; however, we were too late for the meeting.  Thankfully the hospital came by with the sacrament and even provided a primary lesson for the kids.  It was cute.  I was so glad we could be there for Alice; she really enjoyed having the lesson as she had her family with her.

After an hour it was time for the kids to say good-bye and let Alice rest.  Tyler left with the gang; I pulled up my sleeves and disinfected the room as I normally do when the kids leave.  She bathed and then rested on my lap for the next two hours while I stroked her hair and sang songs and read books to her.  I could do that all day.

Grandmother and Amberly came to visit.  Initially she was too weak to interact.  She later gathered some strength and emptied her stomach into the pink bucket—then she was ready for play.  She really enjoyed their visit. 

Alice received Methotrexate today at 8:00 p.m.   I really don’t like this drug.  It’s hard on the tummy and makes Alice feel so terrible.  The next couple days following this chemo are rough.  I thought it was her last dose of chemo ever…but I forgot we have one more day on day +6.  We can do it, we can do it!  We will find a way to celebrate on day +6….of course with some Zofran and Morphine.   Almost there little Alice! 

Alice requires oxygen at night…since transplant day, mostly.  She officially stopped eating on transplant day as well (ironically the last thing she ate was a blueberry muffin—and I didn’t take one bite of it, until she was done of course).  She drinks water with ice currently, but it all comes back up after a few minutes...still she likes the feel of the cold water down her throat. 

She rarely complains…just cuddles.





  1. I can't stop thinking about and praying for all of you! My heart just aches to know you have to do all this again! How we love you!!! Keep taking it one little baby step at a time....The Lord is by your side!

  2. All of your Kids are so cute Lisy! So cool the Hospital taught Primary. Love that little Alice, she is one tough Fish. Keep hanging in there, you and Tyler are the Best Parents.