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, September 25, 2013


Wednesday Sept. 25, 2013

Welcome to ICS Alice!!!

Alice has been so excited to arrive here in ICS.  Tyler left at 7:00 a.m. for the hospital.  Check-in was 8:00 a.m.  The sunrise this morning was magnificent, it looked like a brilliant sunset.  Alice admired the sunrise  as she and Tyler loaded the car.  She gave each of the kids a hug before she left.  She had to wake them up to say good-bye.  It was precious and I got it on video.  
Her first dose of Campath completed late afternoon.  It went well enough, however, tomorrow's dose will be given slower as Campath can drop your oxygen levels, and her levels did drop a bit while it was being infused.
We worry about her respiratory condition in the coming months as the chemo therapies she will receive have known side effects in this area.
We are going to think good positive thoughts and take it one day at a time.
It's hard to be negative around this "Shinning Star"...just look at those pictures. :)  It has been decided that the theme for Alice's room this time around will be stars.  She wants her room decorated with lots and lots of stars.  Her favorite song to fall asleep to is, "I am like a Star Shining Brightly".  

I was so happy to hear she slept through her first Campath infusion.

The day has been strange for me.  I have missed Tyler and Alice.  Only one day, and I already miss them.  Tonight around the dinner table when it was time to eat and take turns talking about our day, we called Alice and Tyler to include them in our dinner conversation.  Alice is usually the one to remind us to talk about our day.  When it was Alice's turn we put her on speaker phone and it felt like she and Tyler were with us.  FaceTime/Skype is going to be a good thing again at our house.

After dinner Natalie insisted on having a somersaults contest.  She claims she has already done a trillion, two hundred and forty n

ine summer-salts in her life time.  All I could say was...WOW!  
We all sat around and counted while Natalie began the contest; around the family room Natalie somersaulted in circles 201 consecutive times.  It was making me dizzy watching her.
Blair was up next; if you have ever seen him do a somersault you would bet that completing 10 would be a challenge.  He often gets stuck half way in a head stand.  The rounding of the back is rare as he falls over...just imagine this in your head.  Then imagine him doing 219 in a row...I laughed so hard and could barely count.  I kept thinking he would stop but he didn't.  I asked many times if he was okay, he just smiled and said yes.  When he sat on the couch he said, "I feel light."  Maybe it could be harmful...hmmm.
Matthew was next and completed a grand total of 12.  Apparently somersaults aren't his thing.
And this is what we do for fun! 
Natalie wants to know if there are any kids out there who want to challenge she and Blair's record....minus the Trillion...Tyler and I are not sure if that number is accurate. ;)
*No one get hurt while trying, please.*

Going Back Two Days--Monday Sept. 23rd  (Clinic)

Alice had her final tests done before transplant.  She had a psychology exam, and a final health and physical.  Tyler and I received more pharmacy education regarding the chemo therapies and other medications that will be used for this transplant.  Also we had a final conference with Dr. Boyer regarding details and such for the upcoming months.  
Having a ham sandwich in clinic...her favorite food.

While blow drying her hair one night I mentioned to a friend that if I kept brushing while blow drying, her hair might dry straight.  Alice looked up at me and said, "Mom, I want to be the new Alice."  So I made her the new Alice with straight hair.  It was cute and fun, but we still love the curls more.  She later said after the next bath, "Now I'm the old Alice."

Saying Bye to some of our favorite cousins....Malia and Maria Schlappi.

They lost their balance hugging...and started falling back.

And went down.

Tuesday September 24, 2013 (Chemo Eve)

Just having a little family night meeting before Alice goes in...making sure everyone knows what their assignments will be for the next while and discussing how we will prepare for each day.  I would be lying if I said it was successful and productive.

Thank you to everyone for your encouraging words and well wishes...especially your prayers.



  1. Lisy can I bring you guys anything while you're at the hospital? What are Alice's favorite colors?

  2. My heart goes out to Alice and all who love her during her upcoming treatment. I really look forward to your updates and especially the pictures. Thank you for allowing me to come along with you on this journey. xox

  3. LOVE YOU!!! We are cheering for all of you. This is going to be a successful stay for Alice!! I am so glad she is still in the "I love the hospital" stage!! You are in our prayers my friend!!!