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, February 1, 2012

I am I said

In the early hours of the morning I awoke to Matthew and Blair in our bed. I know that perhaps one day I will miss it when our children are too old to come into our room and push me out of bed in the middle of the night. However that "day" was not last night. I quickly realized I wouldn't get any rest with Matthew's knee in my back, so I decided to head off to the couch; both Matthew and Blair looked too peaceful to disturb anyway. I slept well enough until the morning came and I was awoke by Blair dangling two Wii controls in my face requesting me to play with him. I had to decline his request as Lisy and I are trying to clamp down on the video game play. He's got "game fever," so we are doing our best to balance him out with reading and chores. Those games can be contagious; I had to catch myself the other night playing Lego Harry Potter. WOOOOOO, I could have spent all night exploring Hogwarts.

Anyhow, after Lisy had given all of Natalie's medication to her this morning, she went to run errands while I helped the children do their homework. I have so much respect now for those who choose to home school their children. It really does take a healthy amount of discipline to make it a success. I'm so grateful to Lisy, who has the fortitude to head up lessons for the children consistently. We have tried keeping to a schedule similar to school, so its' cute when the kids remind us when it is time for recess.
For recess today Matthew wanted to play the "orange game." It's simply throwing orange balls at each other as we run around the room. Natalie loves it. She is able to keep up for a short time until her joints start to hurt. I love to watch her smile and be happy, so good for her. The balls we use are soft, but carry enough weight that if you throw it hard enough it can deliver a sting. Today's highlight was Matthew beaming me with a fastball between my eyes. I dropped immediately; my eyes watering and seeing stars. After I gathered my senses, I decided it was early out day for school.

Alice is hanging in there. Her throat sores are constricting her breathing such that the respiratory team was called in to evaluate her. Her little body was working so hard to get oxygen to her lungs that they decided in addition to her blow by oxygen she would need a nasal tube, and an additional medication to open her airways. It seemed to work as her oxygen level rose. One of her lines is giving us problems, it isn't flushing. The nurse is working with it and will let it sit overnight with TPA. In the meantime they have to do her meds still, she will need an IV placed to accomplish this because the other line is constantly running. She isn't going to like having an IV placed.
She is very uncomfortable now, but we have hopes that upon the weekend she will show some signs of feeling better. She does not say much, and when she does you can hear the struggle from the back of her throat. We are so happy when she does communicate with us through pointing and waving.

On a different note, after spending so much time at the hospital it amazes me how much higher my threshold is with regards to fluids and odors. Case in point; today I cleaned the toilet on my knees with a Clorox wipe in one hand, and fudge pop in the other. I thought to myself, "this is pretty gross," but I'm good with it. Best fudge pop I ever ate.

Now on a lighter note. The other day I was driving to the hospital, and Neil Diamond was playing on the radio. When Neil started to tell me about where palm trees grow and how rents are low in L.A., he had already (as he always does) sold me on singing with him. With one hand on the wheel and the other playing the air tambourine, I began putting on a clinic at every Foothill Drive stoplight. I'm sure if it weren't for people adhering to the law, they would have passed on the clinic; but it didn't matter, I was making it happen. By the time I arrived at the hospital, I was charged and ready to go. If you too would like to put on a clinic, follow this link and make it happen:

Thank you all for following Natalie and Alice's progress. We are so grateful for your encouragement and love for our children.



  1. Sweet Alice; she is a child of strength and courage! She has the best examples in front of her: Natalie, and the rest of her wonderful family. I am channeling all of the power in the Universe for her to feel better quickly.

  2. Wow! Hooray for the simple things in life: Neil Diamond and a fudgesicle! You guys are good at focusing on your blessings and you never complain. Thanks for being such great examples to all of us blog followers.