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, September 9, 2013

Another Quick Day in Clinic

Alice soared through another week of no infusions.  We are so happy the steroids are doing their job.

Her counts are:  Platelets 47, ANC 600, Hemoglobin 9.9

For Alice this is great...for anyone else these figures are horrible.

We learned today that her donor has been contacted again, he is still available and will be ready by mid-October.  Her preparatory Chemo regimen will start the last week of September and will last for three weeks.  The first week of Chemo the doctors will allow her to be treated outpatient.  After that first week they will admit her for the long hall.  Including her prep regimen, transplant, and recovery her estimated total hospital stay is expected to be 7-9 weeks, if all goes as planned.

More dates and details will come next week.

In the meantime, we will pray for her donor to be healthy and safe...as well as expressing great gratitude for him.

Lisy
Play time in clinic...she insisted on the tutu.
Posted by at 7:23 PM

3 comments:

  1. AnonymousSeptember 9, 2013 at 10:54 PM

    She is absolutely beautiful Lisy!

    ReplyDelete
  2. Toni12September 18, 2013 at 1:13 AM

    So excited for you guys, this transplant will do the trick I just know it!!!!!! Let me know if you guys need anything! Especially when she is admitted, we are up there every 2 weeks :)

    ReplyDelete
  3. UnknownSeptember 21, 2013 at 12:57 AM

    Hi,

    Robert Tomlinson MD is now providing stress on quick treatment with quality medical care for you and your family. If you feel that you have a more serious condition then you can get treatment with full confidence, thanks a lot.

    ReplyDelete

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