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.

Thursday, April 18, 2013

Busy Week

It was another long day at clinic (Monday). We were anticipating Alice's numbers this week since it would have been two weeks she had been off of her marrow medicine. Last week her ANC count had fallen to 600. If today it was the same it would have been great news for her. However when the doctor came in and reported her numbers it was worse than we had expected. Her ANC spiraled down from 600 to 100. I sat back in the chair and finally exhaled a breath that felt like I had been holding the entire week. When I breathed back in, it felt as though I was inhaling reality as well as the air, and I became old.

Dr. Boyer, expressed his frustration too as he explained that the next decisions to be made would be difficult. It is concluded that Alice will be required to have another transplant. The difficulty will be deciding on how to give it to her. Will we request more stem cells from her previous donor? Or would it be better to start again with a new donor? There are upsides and downsides to both.

When I think of her lying sick in bed with mouth sores, and getting up only to wretch in her pink bucket, my shoulders sink and my frame aches.

Alice, at least for the clinic visit was happy and played as she usually does. She required platelets and slept through most of it. Upon coming home Lisy and I spoke of what is to come and how we will help Alice over her next bump in the road. 

Today Alice received a new cast and the x-ray shows that her bone is healing very well.  We have been loading Alice up with a calcium supplement.  The prescribed calcium supplement from the doctor included magnesium and zinc.  It made her stomach terribly upset and she vomited with each dose.  The very day we decided to stop the prescribed supplement, my cousin Stefanie showed up with the perfect fix...a more gentle supplement, yet very effective.  How thankful we are for her timing.

Somehow she wiggled her way out of the cast.  It was intended to be loose because she was still swollen at the time it was placed.

We heard her talking and playing by herself, when we checked on her she was playing with her cast.

We gently slipped it back on.

The technician at the orthopedic office went to get the saw, to cut Alice's cast off, when she returned, Alice said , "I don't need that saw, I got it off".

A new green cast.  That is the color she wanted.  

Evie mimicking everything she sees...I helped her put Alice's old cast on because the thumb hole was tricky.

Natalie was very brave today as she needed to get more labs done, which meant she would need to receive a couple needles. She was also asked to be on camera in the process. The footage would then be used in effort to help other children feel more comfortable when they get a poke from a needle.  Knowing Natalie, I was very skeptical on how she would do. I thought the only thing she would show these kids would either be, first: where the best hiding places in the room are, and second: to explain in high decibels how to tell everyone they are "dumb," and follow that up by instruction on how to run for the hills when the needles come out. Alas, I was wrong. She did well, and I'm proud of her. Lisy got it on camera or I wouldn't have believed it.

We will post the video tomorrow.

We are excited for Natalie as we are helping her prepare for her wish trip to Hawaii. For now we will be getting her ready and making sure she feels that we are focusing on her as well as mentally preparing for Alice's next transplant. It is interesting enough that this past week I came to realize how far Natalie has come to having a normal immune system. I watched her splash and swim in the pool today. Her smile and content of being in the water with the other children gave me a sense of relief. Natalie doesn't smile enough, and I guess I can't blame her. From her point of view, I imagine she probably thinks she hasn't had much reason to smile. But lately her smiles are coming more often, and they seem to be lasting longer. I would suppose her smiles to be a bi-product of her feeling normal. And I'm sure the anticipation of flying on an airplane headed to Hawaii has its positive effects too. We are thankful to the Make a Wish Foundation!

The three older kids have been learning some pool safety skills and basic swimming from a great friend of ours, Nicole.  This helps Lisy and I feel better about things, while in Hawaii surrounded by water.

Which brings me to another point that seems to make me sound like a broken record, but each time I contribute to the blog I feel an overwhelming sense of gratitude to all of you, and therefore need to express my thankfulness for what you do for us. We read every comment you send to us. We love them.  We would not be where we are now without all of you. Thank you. Thank you for helping us help our children. 



  1. So excited for you for Hawaii! It will be a trip of beautiful memories and you all deserve it!

  2. You all need will help you have some time away from the future stresses of Alice's next transplant! My heart aches for you! I am so grateful for a Father in Heaven who hears your pleas and is giving you strength to bear all your burdens. I pray these burdens will get lighter and lighter with time! We love you and have a wonderful trip to Hawaii!

  3. I'm so sorry to hear about Alice. I hope Hawaii gives you all the boost you need for that. Our prayers are with you.

  4. keep praying for all of you. Blessings!!!

  5. I been reading your blog for a long time now. My heart aches along with yours when i think of little alice going through all that again. I have a son who is 3 1/2 and when watching the videos of Alice in the hospital during her first transplant makes me wonder if i could ever be as strong as you two are if it was us going through this. Your faith is amazing and I pray that your family makes it through this stronger.