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.

Thursday, March 6, 2014

A Wish Bone

Every time I think I am going to get ahead and post promptly...I find myself a week later realizing I have yet to post.  I am so glad Tyler has been good to keep the record updated.


Friday evening the 28th of February Alice came home from the hospital.  She was there only three days, which was a nice surprise.  We weren't sure what to expect with her and the Croup.  Thankfully she recovered well and quickly with little intervention.
A regular position for Alice.

Ready to go home...thanks Emily for sending us on our way.

Alice's Tummy:
It's been a long rough recovery...her tummy is trying so hard, but struggling.  She sometimes poops a dozen times a day, and vomits plenty.  At one point we decided to just simplify things and remove her diaper, put her on the little potty and move her around the house as needed.  She could "go" whenever and give her little bum a break from diapers and increased rashes.  The picture below might be a little too much but someday it will be appreciated for what it's worth.  The hard part was trying to eat a decent meal while her business was going on next to us.  It didn't take long before it made us all giggle at the reality of the situation.  I will admit it did require a little focus on my part to pretend the smell wasn't affecting my appetite.  The kids cherish dinner time, as they each take a chance to tell about their day.  Don't be mistaken, eating around the dinner table doesn't happen every night, as often as possible though.

March 4th, Natalie had a 4 hour long psychology review in Salt Lake through the neurology departments psychologist Dr. Burr.  We hope to learn and understand more as to how her brain processes information. Long day for Natalie.  I was thankful that Tyler took her, I wasn't feeling up to it.

Clinic today (March 6th) went well, no infusions required...just the typical labs and medication review. Tomorrow we will learn if her CMV levels are finally low enough to take her off the IV ganciclovir, which contributes to her suppressed counts.  Crossing our fingers!  If not, she will go another week on ganciclovir before we check her CMV level again.
Counts today:
ANC 300
Hemoglobin 12.9
Platelets 147
Good news...liver function tests have continued to improve.  We know it's because of the TPN (IVnutrition), why they had been so high; glad we are past that point and pray that we can continue to avoid TPN.
Clinic days...this is my version of a time laps :)  I know it's boring!

Alice keeps asking us, "What's wrong with my tummy?" and "When am I going to get better?"  I can't imagine being nauseous all day for months on end.  I was explaining to her that her food and drink needs to learn how to leave the stomach and go to the intestine, it has forgotten and needs a little help.  She said, "I know what's can't see where it's going, maybe if my stomach had a light the food could see where to go."  Later I found her with a flashlight, shinning it down her mouth.  Oh Alice, I want to make this all go away.

We have been working hard to make homemade bone broths and all kinds of foods that help the gut heal.  It seems to be helping!  We saved out one of the wish bones for the kids to enjoy breaking.  Matthew and Blair claimed the wish bone.  I told them to think of their wish but not to tell.  Matthew ended up with the bigger half and of course they told me their wishes.  Matthew wished for Alice to be all better and sweet Blair had secretly wished that Matthew could have any wish he ever wanted.  So for Alice, not only are WE earnestly wishing you well, but many many others who know you or know of you are too.  It will will happen!



  1. Alice, you are so precious. I'm glad you're home with your awesome family!

  2. I think Alice is on to something…keep shining that light sweet girl!! Keep taking this one step at a time my friends!!! We love you guys!!! Can't wait to hear how Natalies appointment went. I hope you find the much needed answers to help her!

  3. She is such a sweetheart. I wish we could take the hurt away and the confusion. You are amazing parents Lisy and Tyler.

  4. Lisy! You guys are so amazing..I wish I was one of the Fish kids, getting to take pottys at the dinner table seems like a pretty good gig to me. I love you friend, sending prayers and hugs your way :)

  5. Your kids are so sweet! I'm glad the croup didn't last long and that she's taking baby steps in the right direction. I'd be surprised if your doctors haven't tried this, but on the off chance that it hasn't been tried yet I thought I'd mention it. Caleb has delayed gastric emptying which was contributing to him vomiting many times a day--his body can't digest food fast enough, making him unable to take in enough calories to grow and survive. The main drug used to treat it is eyrthromycin, but that didn't touch his vomiting at all. It just caused diarrhea. He's been on augmentin for over a year now and it has made a world of difference! He missed it for 4 days over the holidays (ran out of refills on the weekend, offices closed for the holidays, etc) and he was back to puking daily for a month. We had to increase his dose by 2ml at that point (from 10ml/day to 12ml/day) because he just couldn't bounce back from it and he had gained a fair bit of weight in the previous year, and even just that little change made a huge difference. I guess my point is, if you've tried one thing and it didn't work, don't be afraid to try something else. I'm sure you're in good hands and I hope she's back to her old self before much longer!