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, October 13, 2013

Thiotepa, Day -4

Thiotepa began today along with the last dose of Fludarabine.  Alice did very well considering it was her fifth day of Fludarabine as well as adding Thiotepa.  She has been on Zofran around the clock which has kept the nausea away.  She has a great appetite still, in which I'm happy about.

Today's main events were bathing with her new rubber ducky and two Halloween mice-three times.  The rubber ducky was a prize for changing her dressing...a freshly placed dressing...ouch!  The dressing was actually removed and not replaced.  Her line will remain undressed for three days while the Thiotepa is in her system, there can be no restrictions to her skin...also she is required to bathe at least three times a day for the next three days--a very thorough bath.  It's tricky business keeping her dressing dry, protected from tension and germs too.

Thiotepa is yucky and excretes through the skin, causing burning and itching.  She will have a rash, but if we keep on top of it, maybe it won't be too unbearable.  Already she complains that her skin is tender...this is normal.

We change her linens, clothes, etc. three times a day.  Luckily she is only receiving two doses of Thiotepa (1 day).  I must have been exposed to some because my finger is raw and itchy...poor thing--That is Alice, not my finger!

I would imagine that we are seeing the beginning of the yucky days.  I wish to just fast forward the clock past these days until she starts to feel better again, but we will work hard to make it as comfortable for Alice as possible.  We have had another fun day filled with giggles.

Tomorrow, bright and Early I will meet Natalie in EEG...I can't wait to see her.

Lisy




Can you find the bear?

There he is!
Every morning Alice runs to the window and looks for the bear, he is in a new place each day.

2 comments:

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