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.

Friday, April 13, 2012

Virus---catch up post

The nurse practitioner called a couple days ago to inform us that the nasal swab they did on Natalie this past Monday came back positive with Adenovirus. She has a cough and stuffy nose. This virus is one that affects the respiratory track. Thus, why she has had a low grade fever. We are watching her closely and will do our best to keep Alice from being exposed. If Natalie's cough worsens she will need to be admitted. We hope it improves, she is on anti-virals and anti-biotics. This virus can also serve as a moment of truth to the new marrow, in regards to her leukocytes keeping other infections from developing. The truth is the IVIG she received two weeks ago is protecting her mostly from a viral standpoint. The new marrow isn't necessarily producing B cells yet, however, the T cells can prevent any secondary infections.

The season change always blows in bugs, and Adenovirus is common in the spring along with many others, in which we hope to avoid.

We received some great news about Alice, her anti neutrophil antibody was negative. This means that her body as far as they can test no longer has antibodies destroying her white cells...big step for Alice, her chances of needing more chemo just went down with this good news.

We are looking forward to Monday's clinic visit, we will discuss with the doctors Natalie's progress over the past 100 days and we will receive all the results from her testing and CT scan. Also we should hear the results on Alice's chimerism test.

Yesterday Tyler and I had the chance to slip away from the house for a couple hours in the afternoon...everywhere we went I was looking for Avagard to sanitize my hands after touching anything. I couldn't believe that hand sanitizer was not on every door and self. ;) It was strange to be out and about, we felt a bit out of place. I told Tyler that I would have felt more comfortable cruising the halls of the hospital. I'm sure this weirdness will wear off.

This morning Blair woke up early and climbed into our bed. He said, "Mom it's my birthday!" Sure enough it is...Happy Birthday Blair. We will make a cake today. He wants to put some race cars on his cake. I think he should draw some roads on the cake with frosting for the cars to drive on.

I was hoping to just buy an already made cake from the bakery, however, the girls would not be able to eat it. Homemade cake is much better anyway!

Eventually we hope to have a giant Hero party for the kids (at a park somewhere). I've been saving all the large medicine syringes from the girls infusions...they will be great for water fights and relays. Tyler and I really want the children to remember the good things and celebrating with family and friends will be healing for them, after all each of them have accomplished much already in their little lives.


......Hi everyone Tyler here....something funny happened this morning. Blair told me about a new game he, Matthew, and Natalie made up. It's called "Carrot Breath." It can only be played in the morning and never after brushing your teeth. Its essentially tag except the person who has the "carrot breath" chases until close enough to breath in the face of the other person who in turn becomes the one to deliver the gift of halitosis. It was the first time I have ever laughed and dry heaved at the same time. Because of the obvious dangers of breathing on each other in such a way, we had to put the co bosh on this "great idea." However, I told him we could play when the girls are better. I also told him it should be called "Dragon Breath." He agreed to stop, but disagreed with the name. I can live with that.


  1. Happy birthday to Blair! And I love the new game. Anna would be especially good at it. Every morning she almost puts me back to sleep with her wonderful "carrot breath".

  2. You don't know me but I've been following your stories for about a month, with my two children, ages 8 and 10. We have had our own struggles, mostly me, but your stories inspire me every time you post. Not only are your sweet little girls heroes, but you both as parents are amazing heroes, along with the other kids in your family. I've always thought while going through my struggles that people should share their struggles more, and I'm so happy you are documenting yours. I think it bonds people and gives everyone hope. Besides the fact that your girls are adorable and my kids love finding out how they are doing each day. Please keep it up, you are inspiring more people than you know!