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.

Saturday, November 16, 2013

Day 29, Coming HOME! and Day 30 at Home.

November 15, 2013

ANC 6700, Hemoglobin 10.3, Platelets 68

The room is packed, we are just waiting for Tyler and the kids to arrive.  Alice's room seems so empty and quiet.  She has been ready all morning.  We have taken walks down the hall and spent time at the nurses station drawing etc.

Total days in the hospital for this transplant (41)...not too bad.

The video of her ringing the bell will be posted later, it's taking too long to download.

Passing Time.
Nurse Emily and Alice drawing pictures.  Emily was our nurse the last time we were discharged from transplant.
Alice and Mary

Alice wanted to make sure her stork was safe in the wagon.

The princess is packing up.

One of two cars..the second was more full with kids than stuff.
Sonam always did a wonderful job cleaning our room.

Holding hands to the bell.

She wanted to use her magic wand to ring the bell.

singing to Alice

singing to Alice

Emily and Alice

These women had a big role is making Alice better.  Brenda NP, Emily, RN, Meghan MD, Jessica Fellow MD.

Alice insisted on going down the stairs rather the elevator, not usual for her, and look who we ran into...Hilary NP.  Hilary is now in another department, but she was part of the BMT team for years and was a huge part of our journey, surely not coincidental that we ran into her.

Everyone wanted to sit by Alice on the way home.  Natalie was the lucky one.
Returning the wagon and having a little fun in the meantime.

Watching their first movie together.

This pile of stuff is a third of the delivery that came for Alice.  I spent nearly two hours with the nurse sorting and preparing everything.  After the nurse left I spent another hour finishing up.  

Alice receives 12 hours of TPN through her yellow central line.  She received 18 consecutive hours of feeds in her NJ tube.  She has five different infusion in her blue central line throughout the day hours.  In a 24 hour period, Alice is completely unhooked from everything for six hours.  We will make the most of those six play play...move move move, and we hope to keep those precious six hours during the peak hours of her awake time.  Alice currently receives 10-15 oral medications twice a day...depending on the day.  Right now she takes them through the feeding tube, but surprisingly she has a very difficult time with it. I am tempted to try giving them to her by mouth instead....Phew, this is a full time effort.  In just a few weeks things will begin to drop off the list and her care will be less intense.  Until then I plan to go nowhere!

We are thrilled to have her home and are loving every minute of it.

November 16, 2013

Well, we survived the night.  It could have been worse.

Alice is stronger by the minute.  She is moving around more at home, and has eaten a bit more than if she were in the hospital.  She ate some spaghetti and meatballs, rice and chicken, yogurt, and a chicken nugget...pretty good Alice.

She wanted to go outside to the mailbox so was a snowy cold day, but she was plenty warm.


  1. So glad Alice is home! You have always been so organized Lisy, it's no surprise you have all this down to a science! You guys are Amazing.

  2. Wonderful news...As Dorothy said "There's No Place Like Home. I have been changed for the better...Thank YOU, Alice and your sweet family for allowing me the opportunity to be touched. My first encounter with your family is forever etched in my mind as we had come to give Alice a primary lesson and the whole family was there dressed in Sunday attire. The siblings all piled on the bed and so beautifully participated as we sang and shared a story. What a beautiful family you have. Lisy you bore a sweet and powerful testimony in sacrament meeting. May you continue to feel Our Savior Love and enjoy your FAMILY time,
    Sister Peay
    LDS branch

  3. GO ALICE! (picture my 7yr old with cheering hands pumping the air.) And GO, family, because we realize that this is a real family effort. We pray for you daily.