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, February 21, 2012

Alice Day 35--Rituximab (More Chemo)

Today Natalie had a clinic visit. She is very willing and happy to go these days because she really enjoys visiting Alice. It makes Alice's day when Natalie comes to see her. Natalie has maintained all her counts the same as last week. We are so proud of her cooperation with everything.

Alice's white count is 2000, and her ANC is 100. The doctors sent out for another Chimerism test. It will take a week to test. We hope her body's antibodies will be less.

Today was hard for us. We spoke with the doctors regarding the next step for Alice. They feel she needs Rituximab (another Chemotherapy idea). She still has traces (15%) of her old cells producing. This is what they reality the doctors as well as us are in uncharted territory. Alice has been a very unique situation and has responded somewhat unexpectedly to the initial preparatory regimen.

She received her first dose of Rituxan today. This is a drug they have given her in the past--several months ago, however, it did not seem to make any difference. She has some very stubborn marrow in her. We hope this time around it will be different considering she has far less to destroy than out last attempt.

This drug should not affect the new marrow from her donor. Rituxan is specifically targeted to eliminate B cells, in which the new marrow will not produce for another six months anyway.
B cells produce antibodies (viral fighters) and T cells produce lymphocytes (bacteria/infection fighters). We can supplement Alice's body with Immune globulin (Ig) which is a sterilized solution obtained from pooled human blood plasma, which contains the immunoglobulins (or antibodies) to protect against disease. We cannot supplement her with lymphocytes.

Thank you to everyone for donating blood, because immune globulin is a product of the blood, in which Alice desperately needs...Natalie too, of course as well as the red cells and platelets. One single infusion of Ig is a combination of thousands of donors.

I wanted to stay with Alice all day, when I had to leave I could see herself trying to hold back her emotions...her little bottom lip was quivering, she wouldn't tell me good-bye. When I was past the doorway and away from the window I couldn't hold back the tears. I quickly gathered myself and said, "Press Forward". That is what we do. We can only take one day at a time, and sometimes that is almost too much. I Skyped with her once I got home and she seemed happier, I felt much better. What really breaks my heart is when she tries to reach through the computer to play with us. I remember Natalie saying once, "Matthew I just want to give you a hug."

On my way home I sorted out many pharmacy issues and home care deliveries...I feel like I'm refilling a med everyday. I sometimes think about taking a break or a nap, but then something is left undone.
I'm so thankful for all the help we receive, this would be impossible without much help.



  1. We are praying for each of you every single day. The girls ask to see the blog each day to see the progress of the girls. We are hoping Alice improves soon and this new treatment will make a difference this time around. Good luck this week. We can't wait for the dinner on Saturday night.

  2. We are praying for you! Alice is going to make it through this and so are you!!! Thanks for the updates!

  3. We will pray especially hard for Alice. And for all of you. Keep pressing forward!

  4. speak with your pharmacy- they should be able to adjust the meds so they can be refilled once or twice a month instead of scattered all over the place. Like if the med needs refill today, refill all that will need refill for next week. Then after that week refill all meds due that week and so one. One less thing to stress about and maybe you can get a much deserved nap.