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 19, 2011

A hard night

Oh, how much Lisy and I have to be grateful for.  So many miracles in our lives because of the love and compassion all of you continue to show us.  Every night I record a daily record, and every night lately the ending sentence has been in so many words of, “how can we ever express the thanks and appropriate gratitude to you all that have lifted the burden in order to ease the discomforts of our daughters?”  We love you, and thank you from the warmest spaces of our hearts.

I couldn't go back to sleep this morning.  Natalie has had a hard night.  She is exhausted and wants to sleep, however she is so uncomfortable her body won’t seem to allow her to rest.  The vomiting is starting to become more routine.  Around 4:30 this morning as I held her hair back through another episode, all I could do was offer encouragement.  "Get it all out," I told her, "you will feel better when it’s all out."  How would I know such a thing?  After all my experience with nausea is only from viruses my stomach was attempting to usher out.  Natalie doesn't have an unwanted bug, but instead; chemicals that are flowing throughout her blood stream, causing her body to react in the only way it knows how.  That temporary relief we feel after an episode of nausea escapes her.  I see her asleep now, but her face does not show the complexion of rest.  Thankfully she will have an off day for chemo on Monday.  Tuesday calls for one more dose of ATG and then transplant on Weds.  Two weeks from then, should her body accept the new marrow; she will start to feel better.
Posted by at 5:55 AM

2 comments:

  1. TaraDecember 19, 2011 at 9:28 AM

    I can't imagine what you are feeling as a parent with her being so sick. It is so hard when your children are sick and all you can do is offer a little comfort and sit and watch. We are praying for you and hope she does well with her next round on Tuesday. - Shumways

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  2. AnnaDecember 19, 2011 at 9:48 AM

    You guys are amazing. We love you very much and think of you often. The girls never forget to mention Natalie, Alice, and Blair in their prayers.

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