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.

Saturday, March 17, 2012

Broviac Snap

Just now, Lisy is on her way to the hospital with Alice due to her broviac line snapping. The result of the break was due to Lisy picking Alice up and the line being caught in the couch. I wish it could have waited to be fixed tomorrow, but the doctor said to come in right away to have it mended. We put a clamp on it and away they went. I imagine it will be a long night for them both, but I expect them to be back in the early morning hours. Alice was cute as she became excited when we told her that she would be going back to the hospital tonight. She said,"Dad, I go home." Wow....we were really at the hospital too long.

The way the line broke was mild compared to what could have happened. Luckily when Lisy and I changed her dressing last we secured the line tightly, which possibly prevented it from pulling entirely from her chest. At first we called the homecare nurse and they told us to go straight to the ER. Because Alice is a Bone Marrow patient we are not to be caught anywhere near the ER to avoid the risk of exposure to illness, so Lisy called the on-call BMT doctor and it was arranged to go straight to the ICS unit where the IV team could repair the line.

This morning, all the kids could talk about was the leprechaun trap they were going to make. Matthew was on my case about it all day. He opted for "ye 'ol box and bait rabbit trap." A true and tested method for sure. Instead of a carrot he placed chocolate coins. We'll see if it is successful tomorrow morning.

My brother Michael. the Leprechaun

Alice was into headbands today. She saw a lock of hair we had saved and tried to put it back on her head. Then she asked to wear a bow, so Lisy showed her the stash of headbands and bows...she had a great time decorating herself.


  1. I'm so sorry about the broken line. I love the leprechaun trap. Your kids are very creative. I love all of Alice's bows and headbands. Lisy, just so you know, I used your trick on Charlie tonight. He wanted one more lullaby, so I said, "I'm going to go check on Anna, I'll be right back." Here's hoping it works and he doesn't yell at me half an hour from now.

  2. I love the bows! She is adorable - that smile is so contagious! I hope all went well with the broviac line and you got some rest yesterday after what sounded like it would be a long night. We love your posts and videos of the kids. It does make you think she was at the hospital too long when she says she is "going home," but it also makes you grateful to know she is excited to go back and that she remembers the good things about it. :)