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.

Monday, April 22, 2013

IVIG for Natalie--More Infusions for Alice

Evie and Matthew...pals!

I'm staring to feel like it's Ground Hog day around here.  I wake up, look at the clock and think...'what do we have going on today?'  'Oh yes, a doctors appointment.'

Natalie had a visit with the immunologist Dr. Chen on Friday.  The labs we had drawn this past Wednesday were in preparation for this appointment.  Dr. Chen wanted to check specific antibody titers.  Natalie had two immunizations nearly four weeks ago...I think I forgot to mention that in a post, but this is a big deal for us.  She is starting all over with her immunizations.  We are taking it very slow.  Anyway, the titers measure how much antibody an organism has produced that recognizes a particular epitope.

Fruit Snacks...make it worth going to the doctor.

Natalie had some, but little response to the vaccines.  It was good to see some response, but we hoped it would have been more.  Basically, this means her immune system is still maturing and with time that response will improve.

So, to ensure that she would be good to travel, we went ahead and loaded her up with some IVIG to cover our basis while on vacation...this will really help protect her from getting sick while traveling.

Saturday night Tyler and Matthew went with Natalie to the RTU to have the infusion of IVIG.  She did well, it makes all the difference to have one of her brothers with her.  She was more brave!  They didn't get home until almost two in the morning.  It was a late infusion.  We are thankful for a great team of immunologists who have tested her immune system out enough to know what she needs at this time.

Nothing like having your brother by your side to make you feel better.

A couple hours later.

I can't even say how excited the kids are to travel.  We are all looking forward to a change of scenery.  I can't remember the last time we have been beyond Utah or Salt Lake Valley. The kids are counting down the Hawaii.   It just doesn't seem real.

We are going to miss the little girls.

Alice had clinic today, mostly the same scenario as last week, although her white count jumped up again (neupogen).  She received platelets and blood today.  It took until 3:00 in the afternoon to start the infusions.  A full day in clinic.

Levels:  Hemoglobin 7.8, Platelets 22, ANC over 2000 :) wish it weren't artificial, but we'll take it.

Checking In

Getting Comfortable

We suspect that when we return from Natalie's wish trip that things will start happening very quickly with Alice in reference to a second transplant.

We already know the flight home will be long...that sounds terrible doesn't it...we don't sound a little burned out do we? ;)

As far as feeling burned out--we feel that way often, but can't entertain the thought too long, rather we have to keep moving forward and telling ourselves that we can do it!!!  Just like what Alice would say when she was so sick in the hospital..."I can do it!"  It makes it easier when you tell yourself those simple words.

Thanks for your prayers.


Itchy, Itchy, Itchy

She loves dresses

Visiting Grandma and Grandpa Duncan...Lisy's grandparents

Pretending to drive Uncle Deans sports car

Matthew found this on his way home from school and gave it to me.  I love how thoughtful children are.

This video is Natalie showing how brave she is with her blood draw on Wednesday the 17th!

This is an old video when Alice was in the hospital with GVHD and wasn't able to eat.  I found her pretending her pencil was a cookie...I had her pretend again so I could record it.


  1. Love so much abt this post! The videos... Way to be so amazingly brave, Natalie, your my hero :). Darling Alice's silly cookie monster impersonation. I love the pics of Natalie & Matthew together, those are the best brothers!
    Alice, our little Cayd is 5, he prays every prayer for "Little Alice Fish", he never forgets. Guess what? He has a green cast on his rt arm, just like yours!!! He was thrilled to see that you both matched :).

    We love you all so much, sooo excited for your trip. Lisy, my heart is with you & Tyler. I know God already has the path laid out before you, with ALL the comfort and strength everyone will need. Thanks for enduring so beautifully, you inspire me!

  2. Love you guys! Sure hope you have an incredible time on your trip!!!