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, January 10, 2013

Round 3 and The Flu

I intended to post earlier this week, however, I have been under the weather and have felt very little motivation to do much of anything.  Monday night I substitute taught a Pilates class...had a great workout, the next day my muscles were sore, more than normal.  I thought it was from the class, although it was the beginnings of the flu.  I spent all day Tuesday cleaning the house and making sure I sterilized thoroughly.

Matthew has been sick since Friday...a full week now.  We had him tested and he was positive for Influenza A.  He has missed practically a full week of school.  Poor little guy.  Evie got it next, then myself.  Blair seems to be slowing down as of today.

My sweet friend has brought dinner by two nights in a row.  I was especially thankful as I wasn't feeling entirely well to cook a meal.

Natalie, Alice and Tyler are well presently.  We hope that the flu shot that Natalie and Alice received will protect them from this terrible virus.  It's strangely true that the house isn't well and Natalie and Alice are not the sick ones.  We hope it remains this way.  Natalie practically eats  an entire bag of cutie oranges herself each day...maybe all the extra vitamin C will keep her going.

Wednesday Alice received her third round of Rituxan.  It went well.  Getting to the apt. was the challenge.  We had a long night with Evie, by morning we were exhausted.  The keys were lost...I finally found them in the girls' dollhouse.  Needless to say we were not on time to the appointment.  Next week will be better.

Today (Thursday) Alice had an early appointment with the orthopedic.  I called and cancelled it because it wasn't absolutely necessary.  Later today Natalie had an appointment with the pulmonologist.  She didn't want to go AT ALL.  She has long passed her threshold of doctor's appointments.  She fights it entirely.  This month is busy.  We hope she can manage enough to tie all the loose ends so she can return to school and feel like a normal girl...that is all she wants.  Speaking of which Natalie has complained less this week about not being in school because Matthew has been home to provide company on her level.  There is always a positive among a negative.

Natalie continues to ask about her Wish.  It sounds like it may be just around the bend.  She is desperately in need of something wonderful, new/different, exciting, fun and adventurous.  The person who created the Make-A-Wish foundation is someone well as those organizations/individuals who provide funding.  The children find much hope and healing through this program, I'm certain of it.  We are tremendously thankful to be a part of it.


Alice in clinic...enjoying the newest toy at the clinic--a Minnie Mouse bow shop.  She is much better  at leaving the toys behind, because she knows they will be there when she returns.

Pulmonary Function Testing.  It's exhausting, but Natalie did great.  An hour of  aggressively working the lungs would be tiring.  


She just wanted me to take a picture of her.
They boys though the nose plugs Natalie had to use today were pretty cool.



  1. Happy Healthy thoughts coming your way!!! I hope you are all well soon. It went through our family...NOT FUN!!!

  2. Praying for all of you. I am glad to see all those great pics and see the kids smiling.