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, May 14, 2012

Day 145-Natalie, Day 118-Alice

Today in clinic we learned that Natalie's stomach trouble, nausea trouble and diminished appetite stems from a source, in which can be managed much easier than what we hoped it wasn't (GVH). Her troubles have been validated by an x-ray of her abdomen. She is terribly constipated. This seems to always happen after hospital stays, her symptoms began after her previous week long stay. Lying in bed all day and eating hospital food is a bad combination. We should have known it was such, however, we have been so concerned with graft vs. host, which causes problems in the gut, that we overlooked what was happening.

Upon arriving home from the hospital we played a cool game with the least we made it sound that way. We passed a ball around and said something we like about the person who possessed the ball, the reward for saying something unique was an individually wrapped prune. Natalie won three of them, she ate them all. If we continue playing this game the rest of the story is history...

Also, I rubbed her tummy clock-wise with some essential oils to help the process along, some hours later she had to potty. Hopefully we can keep it.

Her labs were great and the doctors are super pleased with her progress. Counts are good. IgG levels are good, her ANC was 2100. Her red blood cells (Hemoglobin) stayed at 10, normal is 11.5-15.5. A little low, but heading in the right direction. Platelets 94, a little low. Normal is 150-400.

Natalie is getting closer to normal. Once her health is stable then the real fun begins. We have some other things to work on...side effect stuff, and there is plenty of that. For example, she is terrified of taking baths, she worries that her line will get wet, that water will get in her ears, and she hates to be cold even for a second. The list is long, but hopefully as time passes she will overcome the anxieties that have developed over time.

We are so proud of her everyday, she really is amazing. I continue to be reminded of how many uncomfortable things she and Alice endure. Yesterday I was drawing the girls meds and a drop of the cyclosporine landed on my finger, I got curious to what it tastes like, so I tried it. WOW, it was horrific!! A tiny drop burned my mouth for at least an hour plus. I couldn't believe it. We mix it into chocolate milk to make it more mild, but I never realized how bad it was.

Alice is great. Her labs were the highest they have been yet without the assistance of any bone marrow stimulants. Her ANC was 1100. We will find out by the end of the week or Monday what her chimerism was. In two weeks she will be off the steroid completely. This is a big step and will shed some light on what is really happening regarding her engraftment analysis.

Well, that is the news from clinic. We are happy to learn that it wasn't as bad as we thought. Lately I have slacked a little with the blog. I have several posts in my drafts that are halfway done. Tyler and I have been trying to go to bed earlier so we can stay healthy, which means my time to get things done is limited. I suppose I need to be more efficient. I want to invent a clock that can slow time down, because I have a bazillion things I want to do, but never seem to accomplish them. Does that sound familiar to anyone? Time is our friend not our enemy...right?

I can account for at least 2 hours of my day spent under the stairs in the play closet with Alice and Evie. We had a very exciting tea party that lasted a long time. I even caught some on video,  it's actually pretty funny.


Natalie and Alice waiting outside the hospital while Mom is refilling all the medications at the pharmacy.

1 comment:

  1. Good news! Isn't amazing the roller coaster ride from clinic visit to clinic visit! I seriously would feel like my head was spinning!
    Natalie is doing so great...the anxieties are definitely medicine related. Emily used to think bugs were on her arms..she had scratches and little scabs everywhere from trying to pick them off. Slowly the anxieties go away and become faded memories. It's so strange because I remember stressing about them so much :) Emily still won't take showers and she hates her ears getting wet, maybe from the hearing loss, I am not sure.

    You guys are doing so great! Keep up the great work and don't worry about us...get to your blogging when you can :) You are putting the most important things first; the best things first :)
    Have a wonderful week!