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, December 14, 2011

The Beginning of the End

My alarm sounded at 3:00 this morning, both anxious and nervous Natalie and I drove out at 4:00am to Primary Children's Hospital to begin her chemo and inevitable marrow transplant. We checked into the ICS at 5am and by 6am she had started on her first dose of chemo. As the doctors have consulted us on what will be a few different types of "chemo medicines" to properly "break down" her existing marrow, Natalie's first dose of slow poison comes by the name of BUSULFAN. Busulfan is a med that is typically used to destroy fast growing cells by interfering with the cells in the growth cycle. The side effects will be nausea and mouth sores. The mouth sores are what I fear the most for her as we all can relate to having a canker sore at some point in our lives. While going through chemo the mouth sores can be so prevalent that they reach beyond the mouth and appear in the throat and sometimes down to the stomach. To slow down the cankers Natalie will have a dose of certain meds and mouth rinse after every meal to prevent the bacteria from building.

Overall a good day as she did struggle with having to receive another IV. The IV was for dye to be place in her veins for a CAT scan. The doctors needed a full body x-ray to utilize as a resource for a before and after study during her chemo. They will be required to watch with a close eye her right lung as the chemo takes hold of her.

It is interesting to me how well she looks at the present, and with this small window of good health it becomes the opportune time to break her down in order to make her strong again.

On a lighter note, before it all began I sat and stared at the tube of Busulfan before the nurse reentered the room to hit the "go" button. Natalie had dozed off; and because it was still early in the morning, perhaps I was a bit tired because I thought for a moment what the initial conversation might be like between the Busulfan particles and Natalie's marrow? I immediately thought of a movie; I don't recall the title nor the exact verbiage, but I imagined that the Busulfan enters the room and announces to all the cells in the marrow, " Everyone, I have come to chew bubble gum and kick tail......and I'm all out of bubble gum." Alas...I digress.

With the first day come and almost gone, I want to say how thankful we are to all of you. Both Lisy and I would not be able to support our family as well as we are with out your help. How wonderful you are.



  1. Tyler, A friend told me about an organization called caring bridge. She said it is a great way to communicate to friends and family when there are medical issues. You might already be accomplishing the same stuff with this blog, I am not sure. Check it out though!

  2. our thoughts and prayers are with you! love, the timmermans

  3. quoted rowdy roddy piper in "they live"! will's favorite movie! he claims it's the best movie ever made. hmmm...i guess he hasn't seen the notebook (enough).
    thank you so much for your updates. i am constantly thinking of you and your family, especially your girlies. our hearts are full with love for you all. we are just a phone call away any time of day or night.
    love and prayers...kelley