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, July 25, 2012

Natalie Goes Home--A Baby Step Closer for Alice

A great day it was.  Natalie prepared to be discharged this morning by gathering her things and all the fruit snacks she had collected from the cafeteria.  She thought it was so funny yesterday when she called to order dinner and the sweet lady asked if she would like two bags of fruit snacks.  Natalie said, "Mom I didn't even say anything, she just knew." 

Trouble came later today when Tyler brought all the kids to take Natalie home.  While we were removing the tape from her IV (an incredibly difficult process) Blair and Matthew saw a stash of fruit snacks--had no idea they were Natalie's treasures she was preserving.  Blair was in Alice's room and of course Alice catches on to the fruit snack frenzy and asks for some.  Blair so generously shares with her.  When I walked into the room I noticed Alice looked very content and her mouth was busy munching.  I asked Alice if she was eating real food this time and she excitedly smiled at me.  Matthew blurted out that Blair shared some fruit snacks with her.  OOPS!  Well she perked up and actually it was great because today they advanced her diet to water only.  She wouldn't drink any because it was not apple juice, although, after she ate the fruit snack she drank water.

It seems as though Natalie enjoyed herself this hospital stay.  Tyler and I gave her as much independence as we could.  She ordered all her meals, slept in her room by herself last night, played bingo and called in her win--and loved the fact that she was the first one to get a bingo.  Natalie even said she was having a good time during this stay.  The only complaint she had was the fact that she forgot to bring Jerome the Elephant.  She talked with her friend Grace for more than an hour this morning, it was great because in the meantime Alice needed me.  It all worked out smoothly.

I know that all of our successes are directly contributed to the many prayers being offered for us.  The truth is when someone is praying for you it is a tangible feeling of encouragement and determination to move forward as well as a feeling of comfort and peace.  Thank you for your support.


Natalie's bed in this room did some cool things...she thought she was pretty funny.

And I thought I was pretty cool to sleep on a couch bed.
Next door neighbors...Alice is standing on a stool.
Bald Brothers!  Yesterday Matthew asked Grandpa Schellenberg for a really short hair cut.  Blair wanted to look like Matthew so he went behind the corner and plugged in the clippers and took off a strip right down the middle of his head.  Luckily he didn't hurt himself, at that point he had no choice to have anything but a hair cut like Matthew's.  The boys love to come to the hospital and visit.  After a few minutes it's time to can get out of hand in a hurry.

Evie thinks the girls' rooms are a playground.  She was happy to see her Mom.
A much needed nap.
Distraction at its best.  This is round one of Mom's make-up.  She completely forgot she was hungry.  I was impressed with how well she managed her lipstick...the mascara is another story.
Round two...she took a little more liberty with this one. 
Just as she was growing impatient again, as the make-up party was over...Alice received a special giant delivery which kept her busy for 3+ hours.  It was a heaven send.  A beautiful castle that was perfect for her age.  We had a wonderful time building/assembling our castle.  Alice said to me when we finished the castle, "Can I take this home...I promise?"  Many times she wants to take toys home from the hospital, until we explain that they need to stay for other children to enjoy as well.  I guess by saing I promise means she is more serious about her request.  Request granted Alice!

We even put together furniture and it was the perfect size for her Make A Wish Barbie. 

Wow...what a castle--she is so happy.

Barbie seems happy too.

This is one serious princess...she had a great time decorating herself some accessories.

Another great distraction...Monster Match.
I was cleaning the room just before she went to bed and accidentally set a jello in her sight and she caught eye of it and the rest was history.  I figured they would be advancing her diet in the morning to clears, so I broke...I confessed to the nurse and he reassured me that it wasn't going to hurt anything....lets hope!


  1. Your family just amazes me!! Keep up the good fight!! The girls are so cute, best wishes to all of you!!

  2. What courageous little girls...I will make sure that one of those Princess Castle Collections goes home with the girls! I'm very touched that this is where it ended up. Please contact me at and I will make those arrangements for you. Sincerely, Anna

  3. I am laughing outloud! Alice is too smart!! Natalie looks amazing! It's the small successes that bring such joy! Here's to many many more! ...Newborn screening passed the board today!!! BIG success :)

  4. Hey, so glad Grace's phone call could be a good distraction for awhile. We are all amazed that Grace and Natalie can talk for so long!!! LOL True girls, huh! Just wanted to tell you Grace remembers to pray for Natalie and Alice every night. Hope Alice is able to come home soon.