Fishes for Marrow Wishes: Day 26, BloodFishes for Marrow Wishes

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.

Tuesday, November 12, 2013

Day 26, Blood

ANC 6200, Platelets 71, Hemoglobin 7.7

Alice is slowly adjusting to the NJ tube. She still does not like to take her medicines through the tube...we think she feels the stiffening of the tube as the medicine passes, it bothers her. Even going very slow is hard. She will get used to it more each day.

She ate a bite of mashed potatoes and she ate an olive. Good work Alice! She was proud to announce that it stayed in her tummy too.

Alice's red cell count dropped below the threshold, therefore she required an infusion of red cells. This is still normal, even though she has been independent of red cell infusions for a while. Ups and downs are very common.

Aunt Amberly came to stay with Alice for the night, they had a great time.

There is talk that Alice will come home as early as Friday.

Lisy