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, October 7, 2013

Past Week

I haven't felt like posting recently...for two reasons, I'd rather be doing something else and I haven't had the words to express myself.

I feel like I can't get enough time with Alice before she goes back to the hospital for more treatments and transplant.  She is so happy, fun and energetic right now....I know it's just a matter of days before all that will change and I don't want to miss a moment of her in the meantime.  The image of her being so sickly on her bed comes too easily to my mind.  The worries of something going wrong and changing our entire world keep me awake at night when I should be sleeping.  I can't help the thoughts and feelings that creep into my mind and heart of her leaving us.  The possibility is there, as it always has been, but this time we understand that the possibility is greater.  With all this said, I wish not to convey a sadly tone, but yet desire that our hopes are bright and that Alice manages well as she obtains good health.

I told Tyler yesterday that I wish I could stop the clock and live life as it is now...forever.  I used to wish that all the time in college, because I wanted more time to catch up on all my homework and projects, to feel ahead and on top of things; now my desire for time to halt is surely more sincere.  

On Wednesday Oct. 2nd, Alice had a clinic visit with BMT.  Her counts were still okay.  Everything was quite good; her platelets were 38, not low enough to infuse, Hemoglobin was 10.3.  We decided to wait until her admission to ICS on Wed. Oct. 9th to check them again…she seems to be doing well.

On Thursday Oct. 3rd, Natalie had a full day.  She had a hearing test, labs and a visit with ENT.  Her hearing test worsened since the tubes were placed, as expected.  We will re-check in 6 months.  Her tubes look great.  She did well with the labs; Matthew came to provide extra support.  The lab technician even provided him with a prize.

Before the appointments we managed to leave home early enough for a tour of the Beehive house.  Natalie wanted Matthew to experience it just as Blair had several weeks ago when he came along to support Natalie.  I think the added activity eases the dreaded feeling that Natalie associates with doctor’s visits.

The Beehive House

The kids were memorized by the toys they had back in those plastic toys. 

The Dinning Hall
Lion House Pantry for lunch
Natalie loves the food.
To the hospital we go for labs.
Hearing Test 

Around The House

Blair looks 40 years older...

Natalie held a somersault contest.  

The final score board.

Grandpa and the little girls.

Evie had frozen blueberries, and the kids thought she lost a was funny.

I love when they have fun together...not always is there such harmony.

Evie, Bonnie, Paige and Alice...cousins.

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