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.

Friday, September 6, 2013

Clinic, Surgery, Cascade Springs

Tuesday Sept. 3rd. 
Alice had a record day in clinic.  She did not require blood or platelets.  Her platelet count was 29, still low but not low enough to need an infusion.  She will have a blood draw over the weekend to make sure that it hasn't dropped too low.

When Alice came home she ran to me and said, "Mom, I got no platelets and I got no blood".  By her statement it would seem the contrary to celebrate, but of course I knew what she meant.  It was so cute.  She shared the good news with everyone.  How strange it seems to contemplate the things she was saying.  To hear a four year old brag to others that she didn't need platelets or blood like she just won a soccer game or something was so strangely darling to me and sad at the same time.

This is life as we know it...and to Alice it's as normal as any other life out there.  Each night when she says her prayers, these are her words, "Please bless that I can get back to the hospital and bless Natalie to get better".  Oh Alice how you love the hospital.  We are grateful for the fact that Alice loves to be at the hospital.  How much harder this would be if it were a constant fight and struggle for her to be there.  Tyler and I talk of this often and truly appreciate this blessing.

Wednesday Sept. 4th
The morning came quickly for me.  I woke at 5:00 a.m. and began dressing and preparing for Natalie's early morning surgery.  I woke her shortly after to bathe her and give her all her medications before she could no longer take anything by mouth.  She was so helpful and cooperative.  Originally her surgery was scheduled for late afternoon.  When the same day surgery called to inform me of the time, I kindly asked them to bump us up if anyone cancelled.  Often times people cancel.  I was so excited when they called back and told me they have switched her to the beginning of the schedule.

Dr. Muntz did a great job placing the tubes in her ear.  He also took a glance at her lungs and sinuses.  Her lungs had some thick mucous in the top.  This is no surprise to us.  Overall she looked great.  Had she not been on Clindamycin (antibiotic) already for the previous week, it would have been an entirely different story.  Hopefully with the tubes back in her ears she can avoid future infections and many antibiotics she otherwise would have required.

Early Morning and lots of waiting.

Saying good-bye to Mom

All done and too sleepy to stay awake

Big appetite--donuts, chips and cookies are not your typical post surgery snack.  This is what food services sent that was gluten free.  She didn't mind.  :)
Blair loves to give Natalie her medicine...he asks everyday and she sometimes will let him.

Thursday Sept. 5th
Today we celebrated Troy's birthday.  Troy is Tyler's older brother by two years.  Troy passed away when he was 14 years old.  Each year Tyler's family likes to do something in memory of Troy on his birthday.  We decided to go to Cascade Springs and be together as a family.  We had taco soup, watermelon and dessert. When Tyler's family first moved to Utah from South Carolina they went to Cascade Springs their first fall in town.  It has many memories for them as Troy was still with them.

After a long winding drive in the canyon this rainbow was a pleasant sight to welcome us to our destination.

Alice and Kymball got a hold of my camera.

Alice, Cooper (her best friend), Blair, Garrett and Natalie

Grandpa Fish, Aunt Kim, Evie, Addie and Matthew

Lisy, Karina, Adam, Tyler and Paul

Bentley, Amberly and Karina

Aunt JessIKA, as Alice pronounces it.

The famous tree to climb at Cascade Springs.

Aunt Kim and the kids.

Aunt Kim (Tyler's Aunt) and I...saying good bye as she leaves for South Carolina.


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