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, May 23, 2013

The Sleepy Fairy

Monday, May 19

Clinic for Alice---Good News!!  She did not need platelets.  She is headed into her third week without platelets.  We are so excited that maybe there is some production happening in her marrow.  She did need red blood cells, and again it took a bit of time to match her blood.

ANC stayed at 2000 which is great considering she went from having Neupogen every day to every other day.  Platelets increased to 19 from 17, and hemoglobin dropped to 7.1, thus needing an infusion of red cells.

We are happy with these numbers, and feel a surge of excitement that our ever so small window of avoiding transplant has widened just a tad, acknowledging that we have a tendency to become vulnerable with the ups and downs of Alice's fickle body.

I said to Alice recently that she is a very special little girl...she corrected me and said, "I'm not special, I'm a fragile little girl, with great big plans...I'm gonna change the world."

She loves to read the story of Ordinary Mary who changed the world, and her favorite song is Mindy Gledhill's Whole Wide World.  Apparently she put the two together and does in fact have great big plans.  I don't doubt her one bit...she has enough strong will and stubbornness to back any dream.

I am very happy to announce that Alice has stayed in her own bed every night for the past week.  Bedtime just got easier, thanks to the Sleepy Fairy.  My friend Annie gave me a great idea to leave a note (from the Sleepy Fairy) under her pillow...on the nights she goes to bed on time and stays in bed.  It's amazing how motivated she is to wake up to a note.  She has been collecting all her notes.  We read them over and over and over.  I love it!!

Wednesday, May 22

Natalie had an appointment with neurology.  It was very good to visit with Dr. Bale and discuss her current seizure medication.  He and I were able to thoroughly discuss Natalie's situation in detail and come together on future care and practices.  We hope to transition her to a different medicine in the upcoming weeks.  I was happy for the extra time he spent with us.  She was terribly bored and continually reminded me of how bored she was, but we survived.

Thursday, May 23

Natalie had an appointment with ENT today.  Her ears are looking better, yet still have some fluid in the inner area.  She will remain on the antibiotic for another week and then we will see how she does.  Hopefully she will improve, it isn't out of the question to place drain tubes again if her infections continue to reoccur.
She was less bored today because I let her take a box of fruit snacks with us to the appointment.  Fruit snacks are the way to her heart.


Can't wait to make another note from the Sleepy Fairy...I'm really having a fun time with this.


  1. I am so happy to hear about many prayers are being answered I believe. She is just the sweetest thing! Love the Sleepy fairy idea!!

  2. i LOVE this idea!!! so glad to read alice & natalie are doing well. i bet everyones excited about summer! blessings to your dear family :-)

  3. I really love that Alice says she has big plans and is going to change the world. That is a great attitude to have. What amazing girls. I always looked forward to reading what is going on and always hoping for really great news. That is a fantastic idea to write notes and I'm sure she loves it. I might have to try it with our almost 4 year old. Going to sleep isn't a problem but she always finds her way into our bed at some point.
    Keep being the amazing parents you are. Such a darling family.