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.

Friday, September 27, 2013

Evie The Nurse/Campath Rash

I took the videos a week ago of Evie giving the girls their medicine.  They are such great sports to let Evie do this...honestly Evie is crazy about it.  She can be very insistent...and so we all give in to Evie and cooperate with her demands of being Nurse.

Today Alice did alright with her third infusion of Campath.  Each dose gets bigger and infused over a longer duration of time.  Today she developed more rash on her body.  It was worse than yesterday, but thankfully the rash responded well enough to the hydrocortizone and Vistaril.  I really hope tomorrow's dose won't be too much for her.  It will be the highest and last dose.  Of course the real trouble from this drug will present itself in a week or two.

The schedule of Campath is as follows.
9/25--3mg infused over 2.3 hours
9/26--10mg infused over 9 hours
9/27-- 15 mg infused over 8.5 hours
9/28-- 20mg infused over 10+ hours

Tyler and I switched places today.  We were happy to see each other.  He was ready to go home, but didn't want to leave.  He kept saying...I don't want to stay, and I don't want to leave.  He wanted to be home but didn't want to leave Alice and I.

Alice is still on target to go home Monday morning if all goes well.  The nine day break will be good for us as we prepre for the long stay.

More news tomorrow.



  1. The video with Natalie- I was waiting for that! Her reaction is priceless!

  2. Those videos are adorable. We miss you all so much!!!! We think of you often. Sending prayers your way. Love you!!!

  3. Those videos are darling! Your girls are such great sports! They just take one after the other and just get it done :)