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.

Tuesday, March 6, 2012

The Day That Got Away

Today was one of those days that seems to happen where you simply go throught the motions and before you know it, the sun is setting. Lisy was able to take off for a while today and run some errands. I stayed back and held down the fort. It has been a struggle to keep things steril as we would like. It feels so good to be home, but there is still a dull fear I have that should I forget to clean a germ infested object; the girls could be infected and we find ourselves back at the hospital.
Alice threw a fit tonight as she pleaded with us to not hook her up to the TPN bag. We go through this each night. However, this evening she was spent. It took us a while to calm her down, but she certainly seems to gain strength in resisiting as the days go on. I don't blaim her. The video posted of her is at the end of one of her TPN doses. Matthew and Blair who make an appearance are doing, as of late, what they games. It is a struggle to monitor their play, as it seems to keep them occupied so well while we tend to the girls. I assume we will pay for it later, but these days we have to pick the battles the best we can.

Natalie is steady. She asked that I shave her head again. Her hair is coming in, but not as full as I thought it might. It will take time, and she is in no hurry for it to grow back anyway. However one of the meds she is on (cyclosporine) is causing her to grow in plenty elswhere. The video posted of her shows a little of where her hair is and isn't growing.


  1. Your kids are so darn cute. I just want to take them home with me!

  2. It is so hard to handle the routine when you get home! You not only have 2 kids to take care of but the other 3 as well! My sister gave me some great advice when I was feeling bad for "neglecting" our other children. She talked of always feeling so horrible for not giving her 5 kids the same attention then it dawned on her that there is a time and place for EVERY child to get the attention needed. With time I have seen this come and our attention has been able to go to our other children in ways I never thought possible. a little oldest never got her mom to help at school but now that she is in high school I am the team mom for her XC and Track team! I love how you said you have to pick your battles so true!! We spoiled Emily with more TV etc. then ever but we look back and honestly wouldn't do it differently. Your kids need something to look forward to to keep their minds off of everything. SORRY for the long post. I feel for you guys and we are cheering for you!! You are AMAZING parents!! As for cleaning just do the best you can. Let the boys go around with clorox wipes cleaning the doorknobs and helps :) Keep up the great work and know we are still praying and thinking of you guys every day!

  3. oh by the way, about the will come in evenly even though it doesn't look like it! The cyclosporine is insane!! We shaved a smily face in our daughters back when she was so itchy she wanted it gone! They seriously look like little monkeys! CRAZY! Our daughter enjoyed not having to do her hair too! You look adorable Natalie!!!
    heres a link if you want to see
    fun memories :)