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.

Wednesday, March 7, 2012

Day 50 for Alice -- Day 77 for Natalie, getting closer

The medication routine is getting smoother. We are adjusting more each day. I spoke with the BMT clinic today and they said both Natalie and Alice can come down a little on their Cyclosporine medication, which is the anti-rejection.
The nurse came and adjusted Natalie's mag fluid infusion to run during a longer part of the night. This will eliminate one more reason to wake during the it can wait until morning.
Also they said that Natalie's vitamin D levels have dropped. Her new dose is now 10 times the old. This should help. Obviously the sun provides the best form of vitamin D, however, this time of year it's hard to find a warm non-windy day to be outside. Also both Natalie and Alice cannot be in the sun much because the chemo has made their skin very sensitive to sunlight. Even driving in the car with the sun shining through the window is a danger to their skin...they can blister very easily, and are at a much higher risk of developing skin cancer. Many new lifestyle changes ahead for us. We are going to keep the sunscreen business's profit margin plentiful.

The girl's oral medications...Alice's side is on the right. A fair amount more in medications than Natalie.

It's a bit of a chore keeping up with all the pharmacy changes, refills, deliveries, pick ups and supplies. Sometimes the deliveries come short of a supply. I have learned over the years to always ask for one more of everything in the event that something isn't delivered. I have fallen back on that cushion many times already. An extra set of tubing, or an extra needle have proven this idea worthy. Today I should receive the missing box that didn't show yesterday.

Last night when I tucked the girls into bed, I looked at the two of them as they share a bed, sleeping so gently, with their fluid pumps in the center of the bed, and thought to myself how sweet it was to see two little bald heads poking out of the covers. I am so grateful that they are home and safe. I sometimes forget all the craziness that has taken place over the past few months, when I see something so clam and sweet.

Tyler and I sat down with the children yesterday to discuss how we want to spend our time, while we are in quarantine. We agreed on a suitable schedule for everyone, including the two little ones...aka naps! I sat down a few weeks ago and wrote a list of all the things I could think of that would have been fascinating to me as a child. I have at least 80 subjects on the list. We call this list our discovery list. Each morning once the medications are administered Tyler or I let the children chose a subject from the list and we google anything and everything about it. Today they learned about tipis-tepees. Blair said that Indians are really good at making them, but now they live in a real house...and of course Matthew wants to make a real tepee today. I told him I would help him once he shot and skinned a real buffalo.

Natalie is hard of hearing due to so many ear infections. The doctors said the chemo may worsen her hearing as well. This has been a challenge in our family. We have to be so loud to communicate around here. When we read to the children we practically have to shout unless there is zero background noise. Evie and Alice make for sufficient background noise that is for sure. Natalie must say "I can't hear" two dozen times a day. I'm certain hearing aids are on the menu for her, as well as cosmetic dentistry.

What she has ahead of her regarding such things is miniscule compared to what she has accomplished already with her health. The major hurdles are behind us now.

On the other hand, Alice can hear a pin drop in a crowded room. She has been fortunate to avoid the problems Natalie has not.

All five children in one little place. We love it!

Alice is getting slightly stronger. We are trying to think of creative ways to motivate her to use her legs. I set up a picnic party on her table, she stood and played long enough.


  1. I love the picture of all five kids. It's funny, because some people look at our trials and say, "How can you do it?" But the reality is that often our trials force us to see and be truly grateful for our blessings. I also love that you learned about tepees. I bet your kids and you will look back on this time with a smile. Someday. Maybe not today...

  2. We did the same thing with Emily. We would study any subject...she LOVED dogs! We also went to Orem library and got about 50 books at a time (I would clorox wipe them down) and then she could read till her little heart was content. It really is a time where the kids can gain a passion for learning because they are subjects they enjoy! You guys are doing so great!!

  3. I love little Evie poking out from under the table! So precious!