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, January 10, 2012

Chemo for Alice and Pranks from Natalie

Natalie's levels are climbing. Her ANC is 900 today! More Platelets today. Many tummy aches and pain. She is on neupogen (bone marrow stimulant)which makes her very achy. Each day Natalie spends a half and hour with the PCMC school specialist. She enjoys the fun learning exercises they do together. Natalie has been planning some pranks for the nurses, so we thought we would post some. She loves jokes and anything silly.

Oh and by the way, we did have Natalie change her clothes and wash up after being on the floor. Natalie has had more vomiting today, and some stomach/intestinal trouble. This can sometimes be a sign of graft vs. host disease. We hope this isn't the case.

Lisy's Aunt Michelle came by and took Evie home with her for the day. It was nice to have a free hand today for both of us.

Alice has handled the busulfan (chemo) and fludaribine (chemo) decently at this point. She has been more fussy today and agitated for obvious reasons. Thursday will be a hard day for Alice. She will be given all three chemo drugs, and one being the ATG (rabbit antibody). ATG is our least favorite and most difficult. The nurse removed Alice's PICC line today. She has had a PICC line in her arm since June 3rd last year. It has just become a part of her. Now that it is gone, she might feel like she is missing a limb.



  1. Glad to see that you can have fun by playing tricks on the nurses. When I watched this with my family it made us laugh. We are so excited to see you getting better. Can't wait to see what your up to next.

  2. Great trick Natalie. My kids all got a great laugh from that one. I am glad you are finding ways to have some fun. Here are a few of our family favorite knock knock jokes. Maybe you can try a couple of them out on your nurses next time you get bored. It’s so good to see you smile. We love you. -The Strongs

    Knock Knock!
    Who's There?
    Who who
    I think we've got an owl in here!

    Knock Knock!
    Who's There?
    Ben who?
    Ben knocking on the door all afternoon!

    Knock Knock!
    Who's There?
    Ketchup who?
    Ketchup with me and I'll tell you!

    Knock Knock!
    Who's There?
    Tom who?
    Tom on, you know who I am!

    Knock Knock!
    Who's there?
    Tank who?
    You're welcome!

    And my favorite knock knock joke of all time...

    Knock knock!
    Who's there?
    Interrupting cow!
    Interrupting co...
    Moo! (Be sure to interrupt your victim when you moo)

  3. I'm glad to see Natalie is feeling well enough to prank the nurses. I love how the nurse first called her Alice when she started lifting the covers and that she played along with the prank. Gotta love the great staff at Primary's!
    Does her 900 ANC mean she is now engrafted? I hope she gets feeling better and that Alice can handle all she has to go through over the next few weeks. Call if you need me to bring anything up!