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

Natalie's Rest Day

I was not able to be with Natalie today, however, Tyler said it was well. This is her rest day from the chemo, tomorrow will be her last day of ATG and then Wednesday is transplant. We are happy to be just a day away from transplant. We know that the worst is still ahead as her body lingers until engraftment. Her risk of illness becomes greater with each day. Today Natalie was able to spend time with Grandmother Fish and the two kept busy enjoying the fun things Grandmother had prepared.
The other day when I was with Natalie, she was talking about missing her friends at school. Not but a few minutes later, emails were delivered to her room from friends and family. Thank you so much for your messages. She had me read them to her each at least three times. It meant a lot.
Tomorrow Blair will have one last blood lab before the big day on Wednesday to ensure that all is well. I know Blair will be okay, although, I wish I could donate in place of him. Tonight I gave him an extra long hug. He is the man of the house right now because Tyler is gone and Matthew is with Grandma Schellenberg. Blair decided that his new sleeping quarters are right next to me in my bed. He and I have been spending some quality time together. I received an entire education today regarding viruses. Allow me to share what I learned in Blair's own words, "Mom, there are a lot of viruses out there. Some are tree viruses and some are leg viruses. I once had a tummy virus, but my leg virus hurt more. The tree virus just takes down the tree. And a giant virus can kill a giant." -- My poor children and their intriguing relationship with viruses and bacteria’s/germs. Let's hope over time they won't be afraid of normal things in life. :)
Tomorrow Alice will also be going in for a routine treatment of IVIG (good antibodies) to hold her over until her transplant process begins.
Well now that it is already tomorrow...it's 18 minutes past midnight, I better get some sleep. More ahead this week, as much will be happening.
Love,
Lisy

3 comments:

  1. I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


    Susan

    Low Platelets Treatment and Natural Remedies

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  2. The Talbot family prays for each member of your family every day.Blair is so brave. Let him know that Benjamin can't wait to play with him again. Your kids are going to be able to face the "normal" things of life and so much more because of all this experience they are getting.
    Heather Talbot

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  3. Your family is in our prayers and contact thoughts wishing you all the best. I love being able to read your blog and staying updated. Keep your chin up!!

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