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.

Friday, February 1, 2013

Alice is Admitted to ICS

Poor little Alice has not been feeling well, she is really struggling with her tummy and trying to keep her and her graft happy in the same body.  She has been loosing far more liquid than she is taking in.  She ran a fever at 3:00 a.m.; we brought her in to the hospital.  Many of her levels are out of balance (due to the severe diarrhea).  Her Magnesium level is high, her potassium is low, her acidity level is high, and she needs more IVIG.  Her poor little body is experiencing all kinds of unfavorable activity, including destruction of white and red cells.  She has some sores in her mouth that are bothering her, yet all of her struggles seem to be magnified with the high doses of steroid she is receiving (recent change).

She wants to be happy and sweet, but it's just too hard right now.  In a few days she will feel better as her body gains a proper balance and the steroids slow the diarrhea.  She has been so cute with her gluten free diet, doing very well, with the exception of her finding frosted mini-wheat cereal in the pantry with Evie, the two of them had their very own picnic on the pantry floor.  I know the more we pursue this GF diet the easier it will get; including the absence of gluten containing foods in the pantry that she can access.  Everything gets easier with time...right? ;)

The most recent plan for Alice's future is to drag our feet as long as possible and hope the steroids will get her back to baseline, as we contemplate the next step.  Because she has warm antibodies (indication that still remains the host/original antibodies), we will have to depend on time even more.  Time is a tool we hope to use in regards to her original antibodies (life span), in which have been less responsive to the chemo and other therapies.  At least for now this is a less abrasive approach, until further information is available.

I included a little about warm antibodies from Wikipedia, for my journal purposes and to help explain what a warm antibody is for anyone who wants to know.


The most common antibody involved in warm antibody AIHA is IgG, though sometimes IgA is found. The IgG antibodies attach to a red blood cell, leaving their FC portion exposed with maximal reactivity at 37°C (versus cold antibody induced hemolytic anemia whose antibodies only bind red blood cells at low body temperatures, typically 28-31°C). The FCregion is recognized and grabbed onto by FC receptors found on monocytes and macrophages in the spleen. These cells will pick off portions of the red cell membrane, almost like they are taking a bite. The loss of membrane causes the red blood cells to become spherocytes. Spherocytes are not as flexible as normal RBCs, and will be singled-out for destruction in the red pulp of the spleen as well as other portions of the reticuloendothelial system. The red blood cells trapped in the spleen cause the spleen to enlarge, leading to the splenomegaly often seen in these patients.

just loving Dad
After a 3 am admission, she is exhausted
Opps... learning to us a spoon and having fun in the process

chocolate pudding party for Evie ended on a bad note

We have tried many things to help Blair remember to turn in his work, even telling him that monsters live in his cubby at night and his work will be scared if it isn't given to his teacher.  One morning the game Headbands was left out and I had this idea; well it worked, and some.  He was excited about it, his work was turned in.  However, he came home and said some people liked it and some kids in the other class laughed.  Anyway, as parents, we are learning too.  I did instruct him to only leave it on until he arrived at school, which he did.  I still think it was cute...he made it cute.