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.

Wednesday, November 13, 2013

Day 27, IVIG---ANC 8100!

ANC 8100, Platelets 63, Hemoglobin 11.0

A new record high with 8100.  I have to admit I almost felt worried when I heard how high she was...still in normal range, but her red cells had dropped yesterday and her platelets some today, so I got thinking maybe her ANC is getting too high.  This is what you can see in Leukemia kids.  Low red cells and platelets and very high white cells.  
Alice's numbers are very good and safe...I had to double check with the doctors to make sure they weren't seeing any trends that pose a threat; Phew...sometimes knowing too much is bad. :)

Today Alice received IVIG.  This will help protect her from a variety of illnesses.

Kennidee came to play for a couple hours.  Alice enjoyed her visit, they made some cute crafts and stayed busy.  Thanks Kennidee!

Alice has been very playful and happy.  I have been away from her for four nights....too long!  I'm back now and ready to bring her home.  They say this Friday is the day.  My time at home these past couple days has been spent organizing my house and getting things in order for her to come home.  Many women from the neighborhood/ward have come to help sterilize the whole house.  What a comfort to us and time saver.  We are very thankful.

Eating a Honey Crisp apple...only one bite, it hurts.

Natalie had a neuro psych evaluation today.  She was tired and very little was accomplished.  Every type of appointment no matter how big or small is always exhausting.  We are tapering off one of her seizure medications and this evaluation could be helpful to us in the future.  Hopefully she will behave better next time.  I can't imagine how burned out she is feeling....wait, maybe I can. ;)

Looking forward to having my husband and children all in one place!


1 comment:

  1. Such WONDERFUL and EXCITITNG news!! Alice, we are SO happy for you! I bet you can't wait to be home with everyone!! Congrats!

    Natalie IS exhausted! I hate those tests anyway! It's so hard thought when you need them and they don't cooperate! Good luck ;)

    LOVE YOU!!!