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.

Wednesday, April 10, 2013


Because I am behind this week, I will make this post in segments so I can keep it all organized.

Monday April 8th 

Alice had clinic.  Counts:  ANC 600, Hemoglobin 7.9, Platelets 52.  All counts are low, however, we knew they would drop as they are no longer being artificially supported, yet we hoped for better results.  The doctors are giving her another week on her own before they start boosting her again with the Neupogen.

It was a long day for us.  She required more blood, however, continues to be more difficult to match.  We are thankful for that person who planned ahead and donated at a blood drive.  She did not receive platelets.

Interesting note:  The couple days following Alice's broken bone were miserable.  She was in terrible pain.  Even pain medicine wasn't helping.  She cried all day and night.  Her body was looking very poorly, as her low platelet count began to manifest itself all over her body.  Her little arm was struggling to heal.  Finally, when she received platelets this past Saturday, things changed instantly.  Within hours of receiving the platelets she no longer complained of pain.  Certainly most of the platelets rushed to the wound and began working their magic.  Her entire well being is dependent on others.  It's amazing how life can be shared.

Plans continue to move forward for a second transplant.  Tyler and I are struggling with this decision.  At times we feel good about it and other times we are confused.  Regardless we are heartbroken.  It almost makes it harder knowing what is ahead in reference to a second transplant, where as before we had no clue what transplant was first hand.  It is good to know what we know, yet it's not....hard to explain.  Right now, Tyler and I are just focusing on keeping our minds and hearts filled with faith not's a constant battle.

Thankfully, we know too much to be afraid and hopeless in the end.  We feel best when we are reminded that Heavenly Father is the captain of this ship and knows our course even in the darkest and stormiest nights.  This is reason enough to stop occasionally for that sigh of relief and comfort.

Playing in the wagon.

A much needed hours in a clinic room is exhausting.  She was extra emotional today with every little thing.

Nice and Cozy

As For Natalie

Natalie also had a doctor visit today (April 8th)....thankfully no labs.  Natalie was seen by the ENT, Dr. Smith.  We are very excited to say that Natalie's ear drum has healed nicely.  Dr. Smith gave Natalie the green light to swim and ENJOY IT!!!  This is awesome!!  So, it is true Natalie has already been swimming, and she said to me, "Mom, have you ever seen what it looks like under's a different kind of blue."  I almost wanted to cry.  I then told her, "Just wait until you see the tropical fish in Hawaii!"  She is going to LOVE it!

Coming soon, A post dedicated to Natalie's new water adventure!!

AND...more amazing news, the hearing test (done April 8th) shows dramatic improvement.  She no longer needs hearing aids!  Still high frequency loss, but hearing aids don't fix that anyway.  We have noticed that gradually as her ear healed that she was hearing better, needless to say, the contention level in our home has improved too.  Less shouting.

Still we plug away at the gluten free's getting easier.  I need to do some research on places in Hawaii that offer gluten free menus...this might be tricky being away from home with this diet.  Any suggestions?

Just wearing a swim cap around the house, are we excited?

Evie does everything she sees.
Natalie's sinus infection is healing.  She hasn't coughed in over a week.  Her fevers have ceased and she is feeling great.  Two days ago she had a mini seizure, however, we missed a dose of her Keppra.  We won't make that mistake again.

 Tuesday April 9th

Alice went back to the same orthopedic doctor who helped us with her leg.  They are so great and wonderful to make special accommodations for us, as we have to avoid waiting rooms etc.  Alice was given a darling pink hard cast today.  It's water proof! :)  They will change it weekly because of her risk of bacteria.  She will get to enjoy all the colors of the casts.  She sometimes puts little things in her cast to itch it.  I think it's cute, but she complains of the itch.

Icing her arm before the hard cast.

Pretty in Pink

Evie wanted to wear Alice's old temporary cast.

We are getting too excited for Hawaii, it can't come fast enough.  I'm still sad about leaving my babies, but I know they will be safer in Utah with family than they would be in Hawaii.  We have some packing to do and lists to's going to be so fun!!



  1. We went to Hawaii in January with our daughter who has Celiac disease. We took alot of different gluten free foods with us to cook. We couldn't find much at the stores there. You can get rice anywhere. We did most of our own cooking...only bought rice and some cereal there. We took some pancake mix, noodles of different type, brownie mix for desserts for all of us. You can buy rice cakes there to make pbj sandwhiches on. we didn't eat out much due to cost for 8 and so Kassidy didn't feel left out. You could always find chain restraunts to eat at and browse their menu's online. We do ask about gluten free items at restraunts. We went to Oahu. Have a great ALL deserve it. My inlaws are missionaries at BYUH right now.

  2. I don't know what kind of phone you have but I know Android has an app
    called "Find Me Gluten Free" that allows you to put in a zip code and will
    tell you what restaurants (and sometimes even menu items) that are GF. DH says there is something similar for the iPhone but he doesn't know the name of the app.

  3. Hey Lisy and Tyler, I have a question for you. But instead of writing it all here I sent a message to Tyler's facebook (It will be in the "Other" messages box). Would love if you could check that. So happy you guys let us follow this journey with you on this blog!
    Chelsy (Tyler's second cousin) :)