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.

Tuesday, December 20, 2011

An Early Morning

I was woke by the nurse this morning around 5am. I could hear some commotion but couldn't see until I got my glasses on. While doing so the nurse explained to me she had found a leak on Natalie's Broviac line and needed to be repaired immediately. I then notice two other people from the I.V. team getting prepped for what was to be a very long hour and a half. They asked me to assist in holding her legs down while another held Natalie's arms above her head. She had an incredibly rude awakening as the third person pealed her dressing off. Just below needles Natalie loathes getting her lines redressed the most. She exclaimed many times that she wanted her mother, and in doing so did it at a decibel that probably woke everyone on the floor. By the time it was over the IV personnel had redone her dressing twice and still were not confident the stint used was going to hold. We went forward however with the administering through the line. At 11am they started her last dose of Chemo. She has taken it well enough; however the we noticed yet again a leak coming from her line.……They just notified me that they will need to repair the line again. If it cannot be fixed they will have to replace the line in its entirety. They have prepped me that will most likely be a long night as the effect of the chemo will set in this evening.
Blair and Alice were up here today too as Blair gave more blood draws for tomorrow's big day, and Alice received her IVIG dose before her stay for chemo starts in a couple weeks.


  1. Natalie-
    That didn't sound very fun! I hope that doesn't happen again. Do you know that the first thing I do every morning is check this blog to see how you and your family are doing? Then, I check it a few times during the day...just in case there is something new; and then, right before I say my prayers and climb in bed, I check one last time. I just wish I could go visit you and give you a great big hug!
    I am sorry for all the poking that you have to put up with. How about each time you get another poke, I save you another hug. You'd better start counting them for me. I will be exercising my hugging muscles so I am ready!
    I love you!! - Sis. Strong

  2. Love you guys! My kids pray for Natalie and Alice (and Blair, of course) every morning and night.