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, March 3, 2012

Second Day Home for Alice

Here are some pictures we didn't have time to post yesterday. We were having too much fun being together.

Just enjoying her room for the last time

one of many loads

Empty spaces can be so fun

Having everyone under one roof has been wonderful. I feel such a relief knowing that all my energy can be spent in one place, I don't have to wonder what is going on at the hospital or at home at the same time. It still has not sunk in yet for me. I guess after 80 plus days in the hospital I will have to remind myself that we are stationary now-and together.

We were so excited to take Alice home. We will miss many things about the hospital. We have become so comfortable there and will truly miss all the people who we have come to know so well. It is a wonderful place.

Many visits in clinic yet to come...possible short stays in the future, hopefully not.

Last night after we had dinner and settled down for a second, we had a couple hours before the nurse came to the house to sort out all Alice's meds. We let the kids just gather around Alice on the floor and adore her. She was laughing at everything, soon we all were laughing. It felt strange to look around and count five children in one spot. I remember looking at Tyler across the way on the opposite couch and thinking to myself...this is Heaven. It was a peaceful happy feeling, until of course nobody could agree on the same game to play, and that peaceful heavenly feeling sort of slipped away ;)...well it was still lovely, just louder.

Three hours after the nurse came we finally had everything organized. Alice has almost double the amount of medications as Natalie. It will be a circus around here keeping track of the medications and infusions. We need at least a dozen timers to keep us on track. Each week maybe we will drop a medication and eventually we will have a bit more freedom.

Matthew had been planning a giant family slumber/movie party to celebrate Alice's return. To say the least it was a very sleepless night for everyone. Between three medication pumps running, Evie wanting to teeth all night, and everyone thinking they had to use the bathroom every hour, just didn't amount to much rest. We will always remember it though, and be reminded not to have another giant sleepover until everyone is at least 10 years old! And best of all Alice woke as usually at 4:00 am requesting the Backyardigans. However, as terrible as that sounds it's not so bad, because she is content to watch it with no volume. It made sleeping more feasible for the rest of us.

Alice has eaten better since she came home, she still crawls everywhere. It seems so strange to see her crawl. It won't be long before she is walking again.

Most of the pictures below are from yesterday.

A well anticipated bowl of cereal

A welcome home hug from Matthew

Happy to be home

Just a portion of our pharmacy chaos

What? Watching another movie!


  1. We love it and love you guys so much. It brings happy tears to my eyes to see you all together again!

  2. So glad you're to this point and into the next phase of things. I'm sure it won't come without trials but you are all together! So glad you've made it!!!

  3. Yay! It's wonderful to hear about your family together again. I'm glad you let them have the sleepover. Even if no one got any sleep. Thanks for sharing the pictures and stories. We love you guys.

  4. We are SO excited for you!! It is so wonderful to have everyone home together...let the healing begin! :)

  5. Awww.. I miss her already! I will miss taking care of her and see you guys but I am so happy to see pictures of her home and in her element with her brothers and sisters. I will have to come over and say hello when you are in the clinic.

    Love to you..

    Nurse Emily