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, October 16, 2012

Clinic Free Week

Natalie and Alice did not have clinic yesterday.  This is a first for Alice to go two weeks without labs, etc.  Natalie was so happy to have a week off.  Alice didn't seem to care either way.

Natalie developed some itchy skin, possibly hives two days ago.  We wondered if maybe she was experiencing some graft vs. host.  I called to Salt Lake and they said to give her Benadryl every 6 hours for 24 hours.  If the rashes respond to the Benadryl then she does not have GVH.  So far so good.  It is possible her antibiotic is creating the rash.  This is something we are sorting out.

We always worry about the girls regarding the good flora in their systems after such prolonged uses of antibiotics.  They eat a lot of yogurt, however, the doctors suggest not to use probiotics just yet.  It will be a hard transition for both of their bodies to find a good balance.

Sometimes when I find myself in la la land I imagine that I am microscopic and can travel inside the human body.  I envision myself investigating all the processes of the body and solving all mysteries and wonders of what is happening inside and what to do about it from an outside approach.  I'm sure one day when we learn the mysteries of God we will realize how simple it all is.  Simple yet fascinating.

Alice had an appointment with the orthopedic doctor today.  Her x-ray indicated that her leg is healing, however, she is required to stay in the long leg cast for another 10 days.  She is almost two weeks behind schedule of a normal healing process.  We expected this to be the case.  When they switch it to a short leg cast she will be allowed to walk on it.

It hasn't been as hard as we expected with her in a cast.  Because of her forced stationary state she has lengthened her attention span and can play for hours by herself with only a toy or two.  Whatever is in her reach becomes entertainment.  I think some good is coming from of late she has been trying to walk on it.

Maybe I could use a broken leg...all the reading I wish to do might come to pass. ;)

Thanks again for your love and support.


Matthew's game...who would have thought there would be an owl at a flag football game.  It was awesome, Natalie couldn't keep herself away from the owl.  The girls don't normally go to the games, but this was a nice surprise.

Alice found her money bank and said, "Mom, I am ready to go buy ham!"  She loves ham sandwiches, and we were out of ham far too long according to her.  It's one of those things when you head out to the store and your kids tell you what they want and somehow you forget to get it....over and over again.  I counted her money and she had enough to buy a quarter pound of ham.



  1. I wanted to make sure Natalie received the email letter I sent through the hospital link on your page while she was in the hospital. I think I sent it a day or two before she left. I sure hope she got it.

  2. I don't think that I have ever known a kid that wanted to buy ham with the money in their bank! :-)

  3. I want to go to a football game and be that close to an owl! I heart owls!

  4. so adorable! I LOVE your updates. You are always in our prayers...the girls look good! :)

  5. I love reading your updates, and I am so happy the girls are doing well. You inspire me as a cancer mom.