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.

Monday, December 30, 2013


ANC: 1100

HGB: 13.8

PLTS: 94

This past week I’ve have to stop a couple times and realize just how long this stay has been for Alice. We’ve had so many stays over the years that most of them blend together now. If it were not for the records we keep as a family, many of the details of our daughter’s journey would be left to the fleeting memories in our minds. It’s been a tough month, and a great month. So many of you have come to our aid and provided to us the love and generosity we could have never expected from the beginning of this journey.  It has been difficult to watch Alice endure a virus that seems to linger far past the expected time it should have taken to expire. I noticed today on her left hand new shingles are presenting themselves. I know when the doctors see this it will tack on more days to Alice’s stay. I hope not, but we know the drill too well.

Yesterday we received a call from the hospital informing us Alice had gagged up her NJ tube. She will require another tomorrow morning. So, tonight some of her medicine would be required to be taken orally. That of course was an event unto its own. Patience and selling were required and after only thirty minutes I had exercised both and achieved success. I really do wish this stay was over with and that we had Alice home. To be honest, it can be much more difficult to have her home, because so much care is required for her. At the hospital the nurses are able to do much of the work. However, there is nothing like having your family all together. The schedule of taking care of a family when one is in the hospital can become confused because it is so difficult to stay on the same page with all of the logistics involved. Many times the kids feel like they have taken the back seat. Helping them understand that we love them just as much can be a difficult sell sometimes.

Above is a time laps I made over the holiday. Usually I will get a full day in, but this time I forgot the camera at the hospital so it ran for a couple days. It may be longer but it shows how often Alice requires care day and night. When it becomes dark you can see the periodic visits from nurses during the night as their headlamps illuminate the room. In addition to the night shots, you can see Alice’s foot movements because of the red light on the toe.

 Some of you have asked how I do the time laps shots. What you need is a camera that has a setting to take a picture automatically every minute or thirty seconds. I think most digital cameras now come with this particular setting. Once you have the pictures you will need some multi-media software to combine all your pictures into one shot. The time laps below was shot at thirty second intervals and combined into one shot at 23.98 fps (frames per second). I'm not an expert, but its been fun to learn.


1 comment:

  1. I hope you guys are home soon and that 2014 bring some wonderful things for your family!