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 24, 2013

Merry Christmas Eve

December 21st (Day +64)

ANC 500
Hemoglobin 9.1
Platelets 144

Infectious disease doctors stopped by today, the rashes along her face, foot, leg, and back are looking darker, which means they are beginning to heal.  The sooner she can clear the shingles the better...obviously, but then her immune system can focus on the CMV.  Currently her forces are split between two major viruses, she needs to win first one battle to be able to successfully win the next.  So anyway, the infectious disease doctors were happy enough with her improvements.  By next week we should know how well the CMV is responding to treatment.

My Sweet Grandma Duncan passed away this past week.  We will miss her.  I was blessed to live so close to her and would visit with her as often as I could.  I have learned so much from her over the years.  She is someone I wish to become.  Even her last words to me were..."How is Alice?"  I know she will watch over Alice...she worried about her just as I do.




Grandma Duncan and I...this picture was taken at my Grandpa's funeral just a handful of months ago.


Jake and Tami visiting from Huston, Josh visiting from Hawaii.
We've had some visits from our far away family, who have come into town for Grandma's funeral.

Little Evie, picking out a few of Alice's things...hoping maybe she can get out the door without Alice noticing.

A lovely visit from Grandma Schellenberg...all the way from Spain.

And of course Cooper....we love Cooper visits.  He knows how to cheer Alice up in a hurry.

December 22nd

ANC 100
Hemoglobin 10.9
Platelets 110

Alice will start receiving neupogen daily.  The gangcyclovir that she is receiving to fight the CMV has a side effect of knocking down her counts.  Her counts should recover when she no longer needs gangcyclovir.

Each of the nurses have been asking Alice if Santa knows that she is in the hospital.  Without hesitation, she nods YES.  I do believe Santa is very aware that she is here.  I told her that Santa always goes to the children in the hospital first.





December 24th

ANC 100
Hemoglobin 8.0
Platelets 143

Today the doctors came in to deliver some good news.  Her CMV level dropped to 4.2 from 4.4, this is excellent news...because it could mean that she is responding to some of the treatment and we are heading in the right direction.  I was so happy to hear this.  Honestly, this is the best Christmas surprise I could have asked for. 

It seems as though she still has some new shingles (spots/bumps) appearing around her body.  We keep thinking that the shingles should be on it's way out, but not quite yet...although, the pain seems to be slightly less.  The morphine continous pump was reduced from .5 to .2 with the ability to add an additional dose of .5 when needed.  I almost feel like her nausea has improved with less morphine, however, we still have to push for the additional help when her pain flares up.  Eventually we can drop the continous.

Alice needed blood today, her hemoglobin wasn't quite low enough but because tomorrow is Christmas they decided to give it to her today.

Lisy--Merry Christmas!

Having a very sleepy day
Cousin Paige came to bring Alice some Christmas cheer.  So cute, thanks Paige.  When Paige found out that Grandma Schellenberg  was coming home from Spain to attend the funeral of my Grandma Duncan, Paige asked her mother Amy if she was coming from Space...where she had been with the stars.  Kids are funny! 

Little Everett, sweetest boy ever!  Paige and Everett are Joe and Amy's children.

This darling note came with the LDS representative when he delivered The Friend Magazine.  I agree, we hope for Valentines Day we are home. :)

2 comments:

  1. Merry Christmas to your family! We prayed for little Alice tonight and hope she has a very Merry Christmas.

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  2. Merry Christmas! I love your beautiful family and I'm so glad Alice is heading in the right direction. I hope and pray that she continues to improve by leaps and bounds! She is such a beautiful soul :)

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