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, November 14, 2013

Day 28, Packing The Room

ANC 5900, Platelets 67, Hemoglobin 10.4

Alice is ready to head home.  She is excited to be with her family.  After many many hospital stays stretching over 8 1/2 years we have learned a few in which I would like to highlight.  I am fascinated by the concept of accelerated healing when the mind learns that it is time to be better and go home.  Both Natalie and Alice always seem to make huge improvements when they learn that home is just days away.

Earlier this week I was very apprehensive about bringing Alice home, she seemed to be far from ready, once the subject (home) was addressed, she made even bigger improvements. I slowly began to feel better about her coming home.  Truly there is no place like home.  I cherish the comment Natalie shared nearly two years ago when she was preparing to go home after transplant.  She said, "Something inside of me tells me I want to go home."

Tyler and I know from experience that it will be very difficult to care for Alice around the clock.  It's a huge adjustment to care for a post BMT child.  Here at the hospital we are parents, we help assist nurses when needed, but when we are home we are all of the above full-time.  I remember so clearly the struggle of finding a routine with all the children in the mix of the nursing responsibilities.  Each time we found a routine, it seemed as though it was back to the hospital and all that hard work was lost.  I feel confident that this time we know what to expect and sometimes this is enough to make it easier.

Just before posting this I had an overwhelming feeling hit me as I looked at Alice sitting in her bed.  It was a feeling of accomplishment.  We have just endured a HUGE accomplishment.  Nearly six weeks ago, I clearly remember telling our dear friends Max and Claudia that I wished I could fast forward the clock to this moment...and skip all the pain and hardship in between.  Well, we have arrived; it happened and all is well...time to go home and continue healing.

Alice's room is almost bear.  It has been a great time overall and we will miss many things about being here in ICS. Mostly the people.  Plenty of clinic visits to come, and perhaps some visits to ICS, but we can tackle it one day at a time.

Most importantly we are so thankful for those praying for us, this strength is ever so tangible and continues to lift us up.

--I will post the video we take of Alice ringing the bell, likely I won't have time to post tomorrow, but will the next day.

Alice called home to ask if the family will come to watch her ring the bell tomorrow.  I missed the beginning of the conversation, but the first thing she said to Natalie who answered, was, "Natalie, how are you feeling, are you okay?"


  1. That is wonderful news!!! So many blessings. We love you guys so much and miss you tons!! Please send our love to Alice and the kids.

  2. Oh, this makes me so happy!! :D

  3. I am so happy that she is going home. What a sweet little girl. I could sit and listen to her cute voice all day. Thank you for sharing everything with everyone.

  4. She is such an adorable little girl and she has caught my heart! I have been praying for her and Natalie every day! I just love those girls!

  5. She is such an adorable little girl and she has caught my heart! I have been praying for her and Natalie every day! I just love those girls!