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, October 17, 2013

Transplant for the Pickle Monster, Day 0

Our nurse Britt and the stem cell scientist Justin

Hanging the Stem Cells....ready to be infused.

More Picture from Transplant Day!


Happy BMT Birthday Alice! 

What a day!  Once again Alice's room filled with family, doctors and nurses to celebrate a new birthday for Alice.  She now will have three birthdays in one year.  Her first August 8th, her second January 17th, and her third October 17th.  Just so happened that both her transplant birthdays are on the 17th.  The engraftment guessing calender is posted on the door.  Natalie made her guess for November 9th which is also her birthday.  I hope she is right.  That would be day plus 23....not bad. 

Our hope and prayer is that Alice will engraft much sooner than her last at day 39.  Again the average day for engraftment with this type of harvest is 21 days.

The facts of the day:

--Alice's transplant completed within 4 hours.

--We learned that yesterday enough stem cells were harvested by Alice's donor that two complete seperate units will be frozen and stored if ever Alice needs them in the future.  The stem cell lab scientist Justin worked from 7 am until 4 pm preparing the stem cells.

--Alice's donor is Male, 37 years old, blood type A+, and weighs 185 pounds.  Alice's blood type is 0+, we'll see if she switches over to A+.  A successful transplant doesn't necessarily mean the blood type will change.

--Her vitals were stable until the very end; as the infusion of stem cells were finishing she spiked a temperature and her blood pressure increased.  Both can be normal during stem cell infusion.  She is feeling better now.

--Tyler, Natalie, Matthew, Blair and Evie were all here to celebrate; and through facetime and Skype Grandma and Grandpa Schellenberg (in Spain), and Grandmother Fish (in Ohio) participated.

--Britt was our nurse.  Britt did an awesome job trouble shooting the infusion.  There was a blockage in the tubing that required an expert hand.

--Alice's favorite part of today was the party.

--We learned today that Alice's CMV has reactivated.  She is now receiving Foscanet three times a day to control CMV.

--All but two of Alice's oral meds have switched to IV....(this actually switched two days ago)

--Alice's diet has transferred to chicken broth and pickles by her request.  Nothing else sounds good to her.  The pickles are strong enough that the chemo hasn't altered their taste.  Just before bed she said, "Um Mom I need something...I need six pickles".  This is mostly what she has eaten today.
Alice wanted me to call her the Pickle Monster.

Pictures and Video to come tomorrow.



  1. Thank you for writing today! I have followed your blog for a long time and I said a prayer for Alice today. You have my continued prayers :)

  2. thanks for letting us know.....I feel like I know your family through this blog.....I have a special place for Alice...when I am having a bad day I like to watch one of her cheers me up....prayers...prayers and more prayers!!!!!

  3. Go Alice go!!! All the Strongs are cheering for you!
    Lisy, I tried to stop by and thank you a couple times for your wonderful gift! After reading your posts I can see you were very busy Wednesday! I don't know how you found the time to even think of me. You are amazing. Please let me know when I can help with the kids or do anything at all to help. We are praying for you!!!

    Love you-

  4. Happy BMT Birthday, Alice! If I liked pickles, I'd offer a pickle toast. Chicken broth will have to do.

    I haven't commented for a long time, but I've kept up with your blog. Keeping you in my prayers and wishing you an easy time with grafting.