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.

Saturday, August 24, 2013

Clinic-School Starts- Natalie Raises Her Wish Star


Tune in to Channel 5 KSL for the complete space journey of Bobble Head Blair.  Sunday Aug. 25th at 10:00 p.m.  Those who are not local, we will post a link of his space journey and the news story on our blog.  It's so cute!!!

Monday--August 19, 2013

Alice had clinic today, she received Platelets and IVIG.  It was another long day but again she did well. Tyler spoke with the doctors a bit about Alice's up coming regimen.  The team decided to not take the radiation/chemo route; Just chemo....however, it's not your average chemo.  It will be aggressive and it will be hard.  Our team here in Utah is in discussion with the doctors at UCSF regarding the subject.  We are hoping for the best.

I stayed home to help get things ready for the older kids to start school in the morning.

We officially moved over the weekend.  We are starting to feel more organized and ready for school to start. We have little furniture left in our name and therefore the entire move was quite manageable.  We stretched it out over several weeks, which made it much easier...little by little it came together.  Many thanks to everyone who helped as we made the transition.


Tuesday--August 20, 2013

Natalie, Matthew and Blair started school today.  It's hard to believe that summer is over and school is back in session.  They have great teachers and already know a handful of classmates.

Natalie will go all day, hopefully she will manage fine.  If it becomes too hard for her physically then we will consider cutting the day shorter for her, but she seemed to have plenty of energy all summer long.

First day of School 2013!!  Third-Natalie, First-Blair and Second-Matthew.


Wednesday--August 21, 2013

Natalie completed her Wish journey tonight by raising her star to the ceiling of the Wish House.  She has been anxious to do this for a long time.  She was excited, but hardly shows it in the video and pictures.  She has a funny way of showing emotions.  In fact, she came down with a fever literally one hour or less before her star party.  We are not sure why she had a fever, it may be her ears or just something random passing by.  Luckily Aunt Karina came prepared with some fever reducer...you would think we would have been more prepared.
A nice welcome coming into the Wish House

The gardens...everything about the wish house is designed after a child's description of what a child thought it should look like.

Alice and her buddy cousin Cooper

Nicole and Natalie, this is inside the wishing room...only one with a key can enter.  Natalie was so proud to be the one with the key who could unlock the door for all of us.

Kenzie, Evie and Addie having root beer floats.

Far table: Blair, Luke, Lizzie, Jordan, Matthew and Kymball.

Cooper, Jessica, Roslyn, Garrett, Karina, Adam and Bentley baby.

Our awesome Make-A-Wish friends, Ann Marie and Daniel.


A dreamy starry night pillow case from Grandmother.

Star Fish from Grandmother.

Natalie wrote some things on her star.  She can always come back and find her star among all the others.  The cute little fish she drew will be a nice symbol to stand out in the group.



And there it is...the one with the ring and yellow string attached to it.


Thursday--August 22, 2013

Natalie missed school today, she had another terrible fever and headache with chills in the night.  She ended up sleeping in our bed to stay warm between Tyler and I.  Once the Tylenol kicked in she was okay.  It's always strange trying to piece together what might be going on in her body.  She will see the ENT again soon and this is when we plan to schedule a time for her to have tubes placed again :-(

It might be the only thing that will help with the fluid and pressure build up.  We worry that her natural drain tubes don't work much at all.

She is so sweet...and such a trooper.

Lisy




2 comments:

  1. I hope both your girls just start feeling better. That's really neat that the story is airing on KSL already.

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  2. Dear Lisy and Tyler:
    Just read your blog and our hearts are so touched about learning of the illness that your daughters have and the treatment that they have endured also what the two of you have been going through. We know that you have family and friends there but we wished that we were there with you too to help and give comfort.

    Please know that our love and prayers are with you and your little ones. Little Blair looks like our great grandson John who 3-1/2 years old. What a Hero Blair is for his sisters. We watched the video on the internet and sat there and cried. You both have always been in our hearts since you left Arizona. You were not forgotten. Just wished we had known sooner what was happening with your little girls.

    I guess facebook is good for finding friends and loved ones.

    Hope this week will be a good one for all of you. We love you.

    Sigie and Ward Davis

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