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.

Thursday, February 16, 2012

No Change in Counts

I have a lot of information for this post, hopefully I can simplify it.

Day 30 for Alice, Day 57 for Natalie

First of all Natalie is doing awesome. When we came in to the clinic on Monday they checked all her blood levels and they were stable and rising. The other levels they checked were consistent to last week. Because her CMV was not going down they doubled her anti viral medication-this means she will have an added infusion into her line. I tried a day or two without any anti nausea medication, and she managed to get through the day with out throwing up--hooray, one less medication to intake. So far, we have eliminated two of them--only nine more to go.

Alice's ANC is still change. Last week the doctors sent out for a handful of tests. The infection/viral tests that have returned thankfully have been negative, more are pending. The main test that I was interested in has reported. This test is called Chimerism Testing/Engraftment Analysis. Basically what this means is...see below (rather than me explaining--I found a great description from the internet)

"A Chimera was a creature in Greek mythology usually represented as a composite of a lion, goat, and serpent. Contemporary use of the term “chimerism” in hematopoietic cell transplant derives from this idea of a “mixed” entity, referring to someone who has received a transplant of genetically different tissue. A test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue."--Seattle Cancer Care Alliance

As of today Alice's blood/marrow consists of somewhere between 70%-85% of the donor and the remaining amount still her own. We suspected this was the case, which partly explains the delay and difficulty it has been for her body to engraft. Her antibodies are aggressive and continue to attack the new cells being made. The understanding is that her body is not making more of her own antibodies (a good thing) but the antibodies that were already in her system pre chemo are lingering and fighting. This means that time is in our court. Those antibodies will eventually die off, but she needs to engraft in the meantime.

The plan is to give her a so called stress dose of steroid to suppress the antibodies attack mode so her white cells can convert into neutrophils. I wanted the doctors to take this route last week, now with the chimerism test results the consensus is steroids. Hopefully this will help her. The next few days will indicate.

The down side is that she will be on steroids for a few months--they need to be tapered over a period of time. Steroids have terrible side effects. We are extremely familiar with them.

Another risk in using steroids is the slight chance of loosing the graft. If the dosing is wrong it can cause her to loose the graft due to over suppression. The statistics for graft loss in this situation is about 10%. We feel confident that this will not happen.

Okay not so simply….that is as simplified as I can be. Trust me, I have much more information in my head, but I will stop here. Sometimes I wish I would have received a degree in something else…I am so fascinated with the microscopic things.



  1. Thank you for the update, Lisy. Sweet Alice is such a strong lady. Please give her an extra love from us. Our prayer for you & your family is that you'll have the strength, comfort & wisdom you need to move forward on this journey. We love you and are happy to do anything for you. Xo

  2. Hey Lisy-Just wanted to let you know I've just started following along and have kept your family and of course your sweet girls in my prayers!

  3. Oh Alice, good luck! We love you!

  4. Wow. First of all, I'm so happy that Natalie is doing so much better. I hate taking medicine--I never like the way it makes me feel. I'm glad that she's slowly decreasing her meds. And poor, poor Alice. Sometimes I watch Charlie and try to imagine him in the hospital without energy or an appetite. It would be so hard for a little two-year-old. We will continue to pray for your whole family. We love you!

  5. Lisy,
    Here is a link to the backyardigans activity page.