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.

Tuesday, June 19, 2012

Clinic--celiac results are back

Busy day in clinic, the girls were very patient.  Counts are well enough--however, lower than they should be at this point.  They fluctuate up and down often.  It's hard for the bone marrow doctors to know how to measure the girls counts in reference to other transplant kids because they have never done transplant on a Leaky SCID patient before. 

Natalie's counts:  ANC is 700, Hemoglobin 9.9, Platelets 79, Chimerisms (whole body-pending, T-cells is 91%, B-cells is 100%)

Natalie's IgA test showed no antibodies for celiac disease.  Very interesting news...the blood testing indicates that she does not have celiac disease, however, they want her to stay on the gluten free diet, at least until her body recovers more.  Then they want us to slowly introduce gluten foods to see how she tolerates it.  I was surprised of the news.  I addressed the concern of the testing being inaccurate because she hadn't eaten gluten for three days before the blood test, however, they reassured me that the antibodies stay in the system for a while...much longer than three days.

Her tummy pain has improved so we will continue with a gluten free diet until otherwise indicated.

Alice's counts:  ANC 400, Hemoglobin 9.1, Platelets 184, Chimerisms (whole body 66%, T-cells 97%, B-cells unavailable)  Her B-cells will be non-existent for a while because she required Rituximab (chemo drug) weeks after the initial preparatory regimen for transplant.  Alice will need IVIG throughout the year regularly.

Both Natalie and Alice had slightly elevated liver enzymes...the doctors will keep an eye on it and check again next week in hopes that it will come down into the normal range.

The girls still require the assistance of the pink bucket each day.  We have them strategically placed in the cars and throughout the house.  The pink buckets have actually become a source of comfort for both Natalie and Alice...sometimes the nausea just goes away once they hold the bucket in front of them.  Alice has nicknamed it "my pink buck".

Lisy

                                    room #4 every week...the dolphin spin wheel never gets old

                                              somebody is standing in the way of her movie

                                                                          leaving clinic

Evie helping Mom clean the gluten free garden peas.  ;)  they made an excellent side dish to the fried chicken Natalie requested for dinner.
                                     
Posted by at 11:38 PM

1 comment:

  1. Jill HeapsJune 21, 2012 at 12:40 PM

    I was sad we missed you in clinic on Tues. You had left just about an hour before! It really is hard for you to know if the counts are "normal" or not. Emily's ANC is 800...4 years after transplant :) I know we have stumped them many times and now leaky SCIDS is a whole new challenge!! Keep up the good work and try not to let the numbers worry you! They are looking good and that always means something! GOOD LUCK my friend! Our prayers are always with the Fishes!!!

    ReplyDelete

Subscribe to: Post Comments (Atom)