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.

Saturday, November 3, 2012


We had a wonderful/healthy Halloween.  The older three kids didn't miss a house in our neighborhood.  They may have covered the block a few times.  Natalie was determined to get the most candy...she did, almost triple.  I suppose because they used scooters and bikes they had an advantage.

The past week has been nice as we haven't had a clinic visit.  More often than not we are feeling more normal...I guess normal is relative.  It has been a few weeks or more since our last hospital stay.  We aren't sure how to feel.   When do we put our guards down and take in that big sigh of relief?  We know it's yet to come and some time away, however, we also feel much closer to where we hope to be.  Of course, we will always need to be cautious...forever, but within the next several months we might just live a fairly normal life: 
And at what point are we speaking too soon?  Hmmm....well, you can never be excited too soon. :)

Tyler and I were talking the other day regarding this subject...we have so many feelings attached to our current situation.  Some feelings are strong one way and others are mixed in the middle.  We look forward to jumping into "normal" life with both feet, although deep inside we know we will miss this time more than any.  The amount of time we have spent together truly is unique, and definitely has been most healing for everyone.
One might think after being with someone constantly, you would tire of them...the contrary is true.  Surely when life pulls each of us in many different directions, it requires more effort to stay connected.

Natalie is incredibly anxious to return to school, however, when she does, she may miss home more than she anticipates.


Mario and Luigi

A real live porcupine

Her hair is the perfect length for spiking

Alice's dream came true...she became a Care Bear, just so happened that our neighbor had a Care Bear costume.

Silly Evie

Dad working hard to have Blair's Mario pumpkin finished by Halloween night

Trick or Treating in the neighborhood

Dad and the Ladybug handing out candy...if you look real close Tyler has Natalie's iPod on his lap.  He was checking up on what is going to become of this presidential election between trick or treaters

Blair asked for a Mario pumpkin--it turned out great

Matthew carved his own pumpkin this year, Jack--he used a stencil--looks awesome Matthew

The after Halloween candy assessment--so fun to sort through

Evie was fascinated with the candles inside

One proud boy

Tyler's pumpkin...need I specify?  Tyler asked that I explain this in one word--HELLO.

Lionel and Jack...buddies
The other day Tyler sent all the kids to clean their rooms.  I later made inspections and this is what I found in Alice's room.  Life in a boot!


  1. Wondering why no Uncle Eddy? That was the BEST costume of the year...the porcupine is pretty rad too!jamie

  2. I love this post...miss you guys!! candace