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, July 19, 2012

The Fight....and....The Attitude!

Alice woke today sad and hungry.  She is tired of having chicken and beef broth.  "No more broth," she says..."My tummy wants eggs and sausage"!  We sat and cried together for a while.  The child life specialist came in with some shaving cream and toys, even that couldn't distract her from the hunger pains. 

Her hemoglobin was down to 6.9.  She is receiving blood currently...and sleeping too.  I thought I would start on this post while she is sleeping.  With blood products they pre medicate with Benedryl, which in our situation has proven to be a tender mercy as she is able to sleep though the transfusion and the hunger pains for a couple hours anyway.  Tomorrow she will receive her colonoscopy, hopefully in the morning.  Although, the scope will be over she will not be allowed to eat until the results are determined, which could be as late as Monday.  Needless to say we are in for a long weekend...especially for Alice.

I will be praying for her little tummy to be comfortable.  Maybe tonight she will be past the hump of hunger pains and will find some comfort.  Kind of like fasting--after so many hours you don't feel the pain, just weakness.

She received IV nuepogen to help boost her ANC--it had dropped to 200.

Alice did not need oxygen last night.  Improvements are happening.

Over the past couple months I have thought of a quote/story I came across some time ago.  A friend of mine shared it with me and I love it.  It's called The Fight...and...The Attitude.  What I love about it is the attitude.  Hard things happen in life and our attitude is sometimes the only thing we can control.  To choose is a gift--one no one can take away...and to choose to be happy is a choice only we can make for ourselves.

     "I did not provoke the fight so I feel no remorse for what I was forced to do.  We were arguing, and seeing that I was right and he was wrong, he decided to fight to cover up his stupidity.  He swung at me first, but being in top condition, I was able to act quickly and block his punch neatly with my head.  Whereupon I jumped to the ground, knocking him down on top of me.  Then, I placed my ear in his mouth and poked his finger several times with my eye.  His teeth hurt so badly from the strength of my ear that he became irate and tried to kick me, but I cleverly blocked the onslaught with my ribs and face.  I scrambled to my feet and ran to my car in hopes that I would get away and save this man from my deadly hands.  Before I could start the engine, he pulled me from the still open door.  That was it, the last straw.  I lost all control.  There would be no mercy! Taking him in my death grip I punched him in the knee two or three times with my stomach, then hit him hard in the fist with my teeth.  He had it, I could tell after that, he didn't even try to pick me up off the ground.  He was too chicken!"

I hope that makes you it always does me.  This poor person had no room in their heart for self pity.  What a beautiful thing. :)


                              Broth, water, jello, and grape slush are the staple around here.

                                              Blood transfusion half way finished.

 Luckily Alice did not have to change blood types due to transplant...her donor was also O+; makes it a bit easier.

Peacefully resting...note the bottle isn't just juice.  It has a added laxative to prepare her for the scope.  So far she has had two bottles--we are on target.

Alice later felt better and wanted to play in the shaving cream

Looking a little puffy.  Her kidney function is normal though.

Tyler said Natalie woke up this morning and put her Make A Wish T-shirt on and the button, she wore it all day.  Is she excited?  Glad Tyler got a picture of it.


  1. Just had to check in & let you know we stopped by the blog tonight. Love to Alice. Love to you all.

  2. You don't know me, but I have been following your blog for a long time. (Following sounds far better than stalking... at least to me :D) Anyway, just wanted to let you know that you all are in my thoughts and prayers. You are my hero as a mommy, and I am always thinking and praying about you all!