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.

Tuesday, December 17, 2013

Dec. 11th - Dec. 17th

I haven't posted in a while, so I will give a quick update and for record purposes I broke each event down by the day.

Alice is doing a little better.  Her shingles seem to slightly be improving.  Her morphine dose has increased so it's hard to say how much of her improvement is real or just masked by the pain killer.  Her rash continues to spread down her left leg and onto her left foot.  The rash on her mouth and along the left side of her face seems to be improving.  She has been talking more.  This is always very reassuring.

Oh how we wish she didn't have to experience the shingles.  A friend asked me how she got the shingles. We are realizing it was inevitable, apparently we have learned that the antiviral that she was receiving (foscarnet) which was to protect her from the Zoster virus (chicken pox and shingles) from reactivating, wasn't effective.  Her body has created a resistance to this drug.  Unfortunately we learned this the hard way.

Also we have learned that CMV (Cytomegalovirus) isn't responding completely to the treatments.  This virus has mutated within her body and therefore will become harder to clear.  The infectious disease doctors said they have had some success in the past with treating mutated CMV.  Mutated CMV and resistence to foscarnet are both rare.  We aren't so worried about the shingles as we are the CMV.  At this point we believe that CMV is only in her blood...with that said, CMV being in her blood it has the potential to enter any area of the body, including organs...anywhere.  Currently she is on gangcyclovir (anti-viral) to help combat this virus.  We will know by next week how successful gangcyclovir is/was.  Truly the best treatment for CMV is a mature immune system, unfortunately Alice's immune system isn't considered's working though!  And this we are thankful could be a much bigger battle.

We anticipate she will be home in time for Christmas if the NJ tube holds true. :)

When came to be with Alice a few days ago I began cuddling with her and loving her.  I said, "I'm going to eat you!"  She said to me, "If you gobble me up the nurse will say, 'Where is Alice'?"


December 11th

ANC- 700
Hemoglobin- 8.9

Received IVIG--this will help her immensely with her battle in fighting these viruses.

A visit from Natalie, of course before we knew Alice had the shingles.

December 12th

ANC- 300

Received blood.  Also she needed a dose of neupogen to boost her white count.

Feeling the pain of shingles, with no outward signs.
So happy to be back with Alice tonight.  Our new room with the double doors.  Her smile is the best and biggest smile I have seen in days.

December 13th


You can see that she responded well to neupogen, her ANC bumped up, this is new for Alice.  In the past it had little effect on her because her body was so full of mal-functioning antibodies, the antibodies would gobbled up any new cells the minute the neupogen stimulated them.  So this is good news.

Aunt Amberly stayed the night with Alice tonight.  Thanks Amber.

Little Zoe came to give gifts to Alice.  Sweet Zoe is familiar with hospital life and oh so cute.  She explained to Alice a little about Disney World.  Alice seemed interested and when she is feeling better, I'm certain she will have more questions for Zoe.
A visit from Barbie...always fun.

December 14th


Grandpa stayed the night with Alice tonight.  Thanks Grandpa.

Just being cute even with the shingles.

Grandpa sent me this picture of the Elders bringing the sacrament to the room...later Alice was able to have a Primary lesson too.  We are thankful to be a part of this even away from home.

December 15th


I came in from doing laundry and she had this crown on...just hanging out.

December 16th

Hemoglobin-14.5 (not sure how accurate this is)

Such a disappointed princess look.
Now that's a little better...maybe her recent win helped her feel better.

This is the game...Pretty Pretty Princess.  She loves it.

Enjoying her new nativity set.

And of course Mom's make up always helps boost her spirits, and provides a little moisturizer on those dry lips...there is some benefit to her using my make-up.

December 17th


Today we placed a NJ tube.  It was time to take the next step in helping her along.  The oral medications were becoming too overwhelming.  An NG tube wasn't an option as every time she vomits it would come up.  I made sure the doctor knew that I wanted this to stay down.  Her feeds will begin to run 24 hours a day into the NJ.  The rate will start very slow and continue to increase as she tolerates it.

Going to fluoroscopy to get an NJ tube.

A little nervous, but she did awesome and held still.
All done Brave Alice.


  1. BRAVE BRAVE ALICE!! We love you! Keep smiling and wearing your beautiful crowns! You are ALWAYS in our prayers!!! Have your mom give you a BIG hug from the Heaps family!!!

  2. She and your family are thought of and prayed for! What a strong spirit!