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, January 14, 2012

Day 23 for Natalie, Day -4 for Alice

It's getting hard to keep our days straight. Days become nights and nights become days in the hospital. If you asked me what day it was I'm not sure I would be able to tell you exactly.

Natlaie has been taken off the bone marrow stimulant medication, therefore, her ANC has dropped to 600. This is typical, however, if she drops below 500 they will give her another boost. This particular medication is administered with caution as it can stimulate cell growth which is exactly what cancer is...we don't want to create more trouble. She received platelets again today. She has a very small interest in eating, although, she ate two bites of noodles last night. She worked a little with the physical therapist today and another school educator.

Alice...just isn't Alice. It takes a lot to slow her down and take her steam. As of last night she hit her wall. She is spent, it's hard to see her this way. Yet, despite her discomfort she is still as sweet as ever; never forgets to thank the nurses and take her medicine. When she needs to throw up, she will say "Mom, by me" and pat the bed next to her. That means come help me mom.

Luckily her Busulfan (chemo) dose didn't increase nearly as much as Natalie's did. This will be to her liver's advantage. Today she received only one type of chemo, but tomorrow will be yucky again. Sunday is her rest day. Horray!

Alice slept and moaned most of the day, had her broviac dressing changed. She does quite well with the dressing changes. Grandpa came to stay with her and will spend the night. Tyler's sister is staying with Natalie. This has given Tyler and I the chance to go home and be with the boys for a day.

Matthew called me at 7:00 am before getting ready for school, he woke me to inform me that he had a plan. He told me that it would be really nice if I could be there to pick him up from school. He remembered that I mentioned I might be coming home to see him on Friday. He said, "I will be waiting by the flag pole and the big tree, please don't forget to come." Then he hurried to hang up the phone before I could change his mind.

It is hard being apart from each other. Soon enough the girls will be home, and during our required time of quarantine--we will have all the time in the world to be together.



  1. You guys are amazing. I'm sure you're getting tired of hearing that from me. I'm so glad that you have great help so that you can spend the day with Blair and Matthew. They are very tough boys. We love you and miss you very much. I can't wait for the hospital time and the quarantine time to be over so we can see you all again.

  2. Glad you got a little break to see your boys. Just wanted you to know that we are always thinking and praying for you all! Our kids have enjoyed the videos so they can put faces with the names of those they are praying for and getting to see their personalities. We like "silly" here as well, so keep up the good work Natalie :).

  3. I just wanted to post a little note and let you know I think about your family every day! You are in my heart and in my prayers. You have such a beautiful family and it only shows more through these hard hard times. I love you and wish there was more I could do. Best, most sincere wishes, and God be with you!

    ~Jenna Wylie