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, June 6, 2013

More Good News and Happy Birthday Matthew

June 3, 2013

Today was Clinic for Alice and Matthew's Birthday.

ANC - 3000+ (increased)
Platelets - 39 (increased)
Hemoglobin - 10.5 (slightly decreased)

Alice's counts were good enough to make us all smile.  No infusions today!! We were in the clinic just over an hour.  Alice again was unprepared to leave as she usually expects to stay a while.

Her hemoglobin dropped a little, which isn't too alarming.  We anticipate her body needing more time for the red cells to replenish completely.  The next two weeks we hope to see a steady level in her hemoglobin.

Tyler and I are feeling more and more confident in Alice's chances of avoiding a second transplant.  It's beginning to look this way, however, we are still waiting to see if the Graft Vs. Host will stay away as her marrow is beginning to revive itself.

It's hard to believe that just a month ago the thought of Alice producing ANY of her three blood lines seemed impossible.  There is plenty of unexplained occurrences in the medical world.  Our explanation for Alice is a little miracle.

Thursday June 6th

Natalie had a clinic visit today in Riverton with the pulmonary doctor.  This was a follow-up visit.  Her lungs look great and she does not need to return to pulmonology for three months...Yeah!!!
Natalie said the apt. was good because Matthew and Blair came along.

For some reason I can't write today, my words and thoughts are all over the place.  I thought I would just post of bunch of pictures of what we have been up appears as though things are normal around here.  :)

Friday Night Barn Party

Lovin the Country (near Fairview)  Good times at the Schlappi's barn.

Does he look content?
Natalie and her Cousin Marina

Evie's first time on a horse

Alice's first time on a horse--this was a little brave of us...especially considering we took the horse's winter coat off with our clothes.

Roasting hot dogs, smores, and cherry pies.

Just relaxing by the fire.

Matthew, Levi, and Anna.

Fun times with Uncle Tyler. 


 Sunday at Grandma and Grandpa's Schellenbergs...they leave for their second mission in one week.  Off to the Madrid Temple.

Alice and her cousin Paige at Grandmas.

Alice and cousin Malia.
Sunday and the Sandbox....bad combo.
 Grandma Duncan and Uncle Dean, we suggested that my grandma sit in the drivers seat for the picture.
I'm a great Aunt!

 Memorial Day 
At the park with cousins, Hailey and Marina.

Memorial Day at the Park.

Cooper and Alice

Kindergarten Graduation

The "Car Pool"

Will, Levi and Blair.  Friends and first cousins.

Last Day of School!!!

 Matthew's Birthday

Happy 8th Birthday Matthew! I always make the best looking cakes ;)

Matthew made his own birthday game with the help of Grandmother Fish.  He wanted to play pin the Book of Mormon on the Missionary.  

Grandma and Grandpa Schellenberg

Alice has been working hard all year doing her preschool work at home.  Learning Dynamics has been so wonderful, they put all the work together for Alice and brought it to her each month.  Alice even worked on homework it the hospital while inpatient...and she loved it.  Learning Dynamics called and invited Alice to be a part of their last day of school, Circus Day!  They were even willing to bring the circus to her, however we felt it would be alright for Alice to be there and see the other children.
We are so thankful for their generosity.

Her Teacher for the Day.

She's a Fish--short! These kids are a tad older than her.  If you look really close you can see that Alice and the boy next to her are holding hands...they just did that--so cute.

Watching a circus on TV

The balance beam

The parachute

Just grabbing some things for ice cream sundaes to celebrate the end of school.


  1. Lisy! I am so happy for you guys, so much great news, especially for little Alice. That is way cool about your parents serving in Madrid, you have the neatest family and I can not believe your a great Aunt! actually..... I kind of can believe it. So happy you guys are having some "normalcy" in your life. Hopefully we will see ya around this summer, maybe like Kohls or somewhere neat like that:)

  2. Congrats!! Happy Happy Counts and Birthday and...well EVERYTHING!! Your family really does look "normal" in these pictures ;) We love you guys!!!

  3. what a blessing from God. many prayers that this upward trend continues. :-)