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, August 26, 2013

News Clip of Bobble Head Blair--Clinic


The first video on the link below is the story KSL reported, the second video was produced by Andrew Smith.

http://www.ksl.com/index.php?sid=26588581&nid=148&title=family-sends-bobblehead-19-miles-in-the-air-to-celebrate-sons-gift

...also I loved the written part of the news story about Alice's donor Michelle.

Clinic

 Clinic today was good, Alice only required platelets.  This is great news.  The steroids are beginning to suppress her unmanageable cells.

Counts:
Hemoglobin 9.8
Platelets 13
ANC 400

We talked more about the preparatory regimen Alice will receive for her second transplant.  She will receive 21 days of prep. in which all drugs will be new to her.  I will include more details later regarding the chemo therapies that will be used.  Originally the doctors discussed using low dose radiation as well...this has been changed, and there will be no radiation used.  We are happy with this decision.

We hoped to use Alice's first donor again, as she is more than willing to donate twice, however, now that Alice is CMV (Cytomegalovirus) positive it is better that we use a donor who is also CMV positive (the risks of CMV spiraling out of control are great if the host and donor are not the same).  We will have more information about her second donor later.

She and I had some good times today in clinic...as usual, she kept me laughing.

Lisy

It makes me sad to think these curls are all going to be gone soon.

This sparkly pink hat is just right for her...she picked it out from the hat rack.

Um...this is what I saw when she called my name, I had been reading...she drummed this up and laughed so hard when she later saw this picture I snatched of her.

We love the crafts....silly puppets!

Receiving Platelets.

Posted by at 6:41 PM

1 comment:

  1. AnnaSeptember 8, 2013 at 3:32 PM

    That picture with the eyes just cracks me up! What a goofy, cute girl!

    ReplyDelete

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