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, April 2, 2012

Another Day in Clinic

The days are going so quickly. It's Monday again, (our clinic day) and thus the routine begins. Here is how it goes. We wake like every morning not sure what day it is for the first five minutes, then I say to's Monday, we can't be late this time. We hop out of bed thinking we have plenty of time to get everything together. I'm getting ready, while Tyler removes the girls night pumps, helps them get dressed, we draw all their medications to take with us, attempt to pack a sterile lunch which does not need refrigeration, change diapers, nurse the baby, find masks that seem to always hide from us, and feeling like we are making good time we are still 20 minutes late. However, we have shone improvement over the weeks. :)

The girls are doing well and the doctors are pleased with their progress. Alice has provided a small concern only in the back of the doctor's mind at this point. She dropped her ANC to 300, therefore, was given another shot in her leg of Neulasta. Because she has proven to drop in counts routinely there is a question formulating regarding her body's old cells still lingering. Next week they will run a chimerism test to verify what percentage of her marrow is donor vs. host. We hope 100% is donor, otherwise more chemo may occur in her near future. We feel confident that the transplant will be successful in the end, it may be tricky getting to that point this first year of recovery.

Alice no longer needs her night dose of steroid, this is great news for all of us. We hope this will help her sleep better at night.

Natalie's ANC is good at 1800 her nightly fluids will be replaced with magnesium fluids again. Still no great news regarding her Wendy's burger. Maybe in a few weeks, but no lettuce and tomatoes on the burger. Wow, what a silly thing to ponder over, but it's a big deal for her.

A dear person whom we have recently met works for Wendy's and just gave Natalie some free meal cards to ensure that she will have all the Wendy's she can handle. Wow, Thanks!!

This video was taken just after we arrived to clinic. Alice had a lot to drink during our 45 minute drive. I had packed an extra pair of pants for Alice. As for Tyler; well, we should have packed an extra pair of pants him too.

Special primo parking...personally I never wanted to qualify for privileged parking but I will say that it has been nice to always have a front row spot available.

Natalie getting her labs thankful we don't have to deal with needles.

Wow, many tubes to be filled...lots of tests. They take many labs at there 100 day mark. Next week we will have a mini consultation with the doctors regarding all the labs. Big milestone. Also next week Natalie will have a CT scan done on her lung to follow-up regarding the concern we had pre-transplant, she will also have another hearing test preformed...we already know the results will not be favorable, she struggles to hear.

That was maybe 40-50 ml of blood altogether.

Alice having her labs drawn...not nearly as many tests as Natalie.

Lisy with the girls, Natalie just had her dressing changed. Never an easy thing.

Tyler with the girls...heading home!


  1. You will be so glad you are documenting all of this. All of the things that seem so common and everyday at the moment! love the sign in the parking garage...brings back many memories :) The masks are darling too! Good luck to Natalie and her test results and Good luck to Alice. We will pray for no more chemo! You guys look great as always!

  2. Great job, guys! I'm not sure I've been anywhere on time since having kids. Thanks for keeping us in the loop on what's going on. We love you all.

  3. I have thought of you guys SO MANY times over the past several months, and especially the past week. I've been home with 3 sick little had RSV and Abbey and Bennett had pneumonia. It was a stressful week trying to stay on top of meds and keeping all kids comfortable. I thought of you many, many times and the strength you have to care for the girls and your family. A week of respiratory illness is nothing compared to what you have been through! On several occassions, I thought to myself, "Look at what Lisy has done. I can do this." You have given me strength and perspective. Thank you!!! Abbey (my 2-yaer-old) asks on a daily basis to "see Alice". She loves to watch the videos and look at the pictures...and especially loves the video of Alice walking (you are still probably getting at least 10 video views a day-all from my phone, by Abbey). When you are able, we will have to meet at a park so Abbey can meet Alice in person. (Sorry Natalie, Abbey's love for Alice must be something about the toddler connection). Lots of love, thoughts, and prayers from our family to yours...

  4. these girls truly are "super heroes"...they continue to amaze and inspire me!