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.

Monday, September 24, 2012

Clinic and Cake Pops

Good reports came from today's clinic visit.  Natalie's counts are great.  Alice's counts are well enough.  Her ANC was 700.  Next week we expect her to require more Nulasta as her trend has indicated.

Just in the past two days we began to see enough improvement with Natalie's lungs to feel better about her recovery.  Her fevers have gradually disappeared.  She even seems to be doing better with her saturation levels at night.  I noticed two nights ago that she was at least two feet away from her oxygen source and her level remained above 90 for a good 30 minutes.  This was exciting for all of us.  We are more aware of her asthma needs and perhaps this is partly contributing to her improvements.

I think today was our new record time for Clinic.  We left the house at 9:00 a.m. and returned by 1:00 p.m.  There were no infusions or shots today.  Natalie was able to do her labs with a finger poke....YEAH!  Next week won't be so easy, as she will require more labs than a finger poke can provide and Alice may require an IVIG infusion and possibly some Nulasta.

We are moving forward one day at a time.  Surely there are many days we feel like we are going backwards, but in reality we are moving ahead just helps to see it in a more tangible way.  Today was a good day to feel more substance to the girls' recovery.


We are still wondering who is Danika the Cat.

Headed out the door for clinic.
Alice dressed herself.
Last night after baths I decided to see how long the girls' hair has grown.  Neither have had it trimmed and both were exactly three inches.  So in nearly 9 months time their hair has grown three inches.  Is this slow or fast?  I don't know.
She was very confused as to why I wanted to measure her hair with a ruler stick.
Okay, have you ever seen such cute cake pops.  Gluten fee even.  Natalie and Alice had a wonderful time eating them as well as the rest of us.  Alice played with hers for some time before eating's like a toy.  Alice and Natalie packed a few up and took them to the hospital to give to the doctors.  By the time we saw the doctors they hadn't any to give.     Alice was running around sharing them, so excitedly; and when only two remained she and Natalie decided they were too good to pass up and helped themselves.  One of the doctors likes to bake and decorate cakes...I did my best to explain to her how darling they were.

Minnie Mouse--Perfect for Alice.
That poor little elephant--he didn't stand a chance with her.
Amazing talent.  I can't believe how cute they are. 

They almost look too good to be true.  Someone knows Natalie has a fascination with Elephants.

She eats the nose first, it's a gummy worm and the ears are a mint cookie.  Thank you for the cake pops!
Evie loves the cereal boxes. 
Once she snacks in them, we usually dedicate the rest of the box to her.  This is where she goes when Mom is scrambling to fix a meal.


  1. Those are the cutest cake pops! I love their hair! It is getting so long, I don't know if 3 inched is fast or slow either. Hope you guys are doing well!

  2. So great to hear your good news! That is such a cute story about the cake pops! Hope progress continues! :)