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.

Sunday, January 8, 2012

Day 18-- False Engraftment!

Natalie had a rough night. She had a fever, some vomit and her ANC dipped to 400. Hopefully by tomorrow her numbers can come back up. The doctor said it is normal to dip a little. I was under the impression that with a sibling match it shouldn't dip. Until her ANC stays at 500 for two consecutive days she has not engrafted, which is what we originally thought.

Natalie has struggled today with what we think is withdrawal from the morphine. She was taken off the pump today, but showed withdrawal symptoms so is now back on a low dose and will continue to wean slowly.

Alice will be here bright and early. Oh, I just want to cry thinking about what she is about to begin. I have to take it all one day at a time and remember that when this is all over, we will be thankful we made it through and will have a much better prognosis. Alice is truly in need of transplant, for her little body has been even more aggressive at attacking itself than Natalie's.

For many years I would find ways to boost Natalie's immune system, not realizing that in her unique situation it was adding fuel to the fire. Alice's body is the same but for some reason she seemed to be more sick at a younger age.

Well anyway, now I'm just rambling--I am tired and need to go to sleep. Both Natalie and Evie are sleeping. I better do the same.

I'm glad that tomorrow I will have all three of my girls with me. I won't have to rush back and forth so much. I know Matthew and Blair are well at Grandma Schelleberg's. I will Skype with them each night so they know we are thinking of them. I miss them already.

Thanks everyone for your support. It is amazing how far words of encouragement can truly take someone (for Natalie and her parents). :)

Lisy

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Posted by at 11:04 PM

1 comment:

  1. Jill HeapsJanuary 9, 2012 at 8:43 AM

    My heart is with you Lisy! I was reminded that when Emily was on all the meds she was NOT herself! When she came home there were a few very rough months where she just wasn't very nice! She has a wonderful relationship with my mom and she wanted nothing to do with her. My Mom was so hurt...she knew it was the meds but had to keep reminding herself. We ALL had to remind ourselves to be patient and know it was the meds changing her personality. I am happy to say we got our sweet Emily back! Just a little FYI :) Good luck today...I am praying for you!

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