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 15, 2012

A Good Day

Well it happened, we finally feel like we found some rhythm in our routine. I woke up tired from another long night, but I promised myself I wasn't going to nap or feel sleepy, until I accomplished the many things I've had on my list. I love to work, and lately I've only had time to care for the children every moment day and night. Although taking care of the kids is first priority, it does feel good to get stuff done so that I can feel productive. I know my enthusiasm sounds as if I invented something ground breaking, but I actually just organized the toys and clothes and the usual meds. Believe it or not, this is a big task for us right now. :) Grandpa Fish came and helped a lot in the garage and helped sterilize bathrooms, etc.

Too often I dream that I can stop the clock and have more time to do things...I would work myself to death I'm certain--Although I would spend many hours just writing thank you cards to so many. I know it's not necessarily possible but in our hearts please know we have many lines that can't make it to paper...let alone the post.

Tonight when I took another stinky diaper to the trash, the can was already to the street; (hooray we are not going to forget the trash this week) Once outside in the dark I stopped for a moment to take in a deep breath and looked upward. Wow, I noticed one star in particular much brighter than the rest and I immediately got the chills. I usually do every time I stop to admire the heavens above. However, this time it felt different. It's amazing what we live under, I always try to imagine that I can see for thousands of miles into space...I wanted to be an astronomer as a kid, as well as a marine biologist, an olympic gymnast and even the president of the United States, well I think I currently have the best career anyway.

One of the neatest things I've done was to look through by brother's telescope to see with my own eye Saturn's rings. Woah! I remember the days as a kid when we spent more time outside than inside. Just because the sun went to bed did not mean that we had to, things may have been a little different then, but it wasn't unusual for us to sneak blankets out to the trampoline after my parents went to bed so we could sleep under the stars. Maybe life has become too busy for things like that, but hopefully not. Maybe someday Tyler and I can take the kids camping and such without worrying about getting sick.

When I saw the sky I thought of this quote, so I wanted to share it. "As truly as we must face unpleasant realities all of our days, let us recognize and praise the thousands of beauties of life around us." --Paul H. Dunn

Okay, so I will now give an update on the girls. Alice is no longer crawling...doggie days are over. She is walking everywhere and it is wonderful. She will be able to drop another medication now that her body is moving more. She wants Mom all the time...if someone stands between us she will cry that she can't see Mom anymore. We are hooked at the hip day and night. We were worried that she was getting a fever the other day, but nothing came of it. She has been extra fussy so we are watching her closely. I think she is feeling better but at the same time becoming aware of how much more she still needs to heal.
Tyler and I had to change her dressing early (it's only been a couple days) because it started to peel off. She was not happy about that. We are getting better at this dressing change thing; as long as we have back up supplies for all our mistakes...we are good.
Make A Wish called today--Ann Marie ;) The girls have their keys from Make A Wish and they are protecting them for the day they will unlock their wishes. Oh what a beautiful time that will be for Natalie and Alice.

Natalie has been having a great time filming herself being silly on her iPad. She then shows the videos to Alice and the two laugh and laugh. Natalie took her notebook with her today on a bike ride and decided to draw pictures of everything she saw. She had all kinds of things in her little notebook, later I found out that she wanted a flash light to shine into a dark tunnel so she could draw some spiders. I was so glad she couldn't find a flashlight...too many germs in that tunnel.

Here is a video of Alice eating a banana...had to get it on film-before transplant she would not touch a banana, now she wants them all day long.


P.S. One bright little star gets me so excited....does this mean we have been in quarantine too long?


  1. I love your perspective on life! Make a wish trips will be just what your ENTIRE family needs to heal! It was amazing to us how good it was for all of us. Alice looks so good. I am so glad she is eating :) Keep up the great work and remember I know how to clean with the steamer...ANYTIME you need me I would LOVE to come over and help!

  2. I love the stars, too. Someday we should camp out on the grass with our kids and stargaze. Wishes and stars really go hand in hand.

    I haven't stopped smiling since last night. We had so much fun with you and your wonderful family. As soon as you guys are all better, our kids will have fun playing together, too.