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.

Tuesday, February 4, 2014

Life at Home

It has been 8 days since Alice was discharged from her 53 day hospital stay.  The first four days were insanely overwhelming.  Never a moment of relief for her nor Tyler and I.  She requires immense amounts of time and patience.  Thus, again I am behind on the blog.  In the meantime we have been to clinic which I will post counts, etc.

Most importantly and despite all the challenges, we are SUPER happy to have Alice home and to be together again.  I truly can't imagine what it might be like if Tyler and I didn't have each other to tackle our daily challenges.  Again and always our hearts are turned to YOU who have made our life possible to manage.

Okay, here's what is happening.  Alice is getting around much better...up and down stairs, running, playing, wishing to eat and loving being home.  She has a VERY long road ahead still.  We are finding new challenges as the days pass, also we are overcoming little pebbles along the way which are worth celebrating.

Our major struggle presently continues to be her gut.  For unknown reasons her stomach isn't emptying into her small intestine and so forth.  We consistently discuss the possibilities and causes but nothing has surfaced, causing us to still question and wonder what to do.  The doctors aren't sure, but continue to encourage us with patience and time.

Alice returned to clinic on Thursday Jan. 30th.  We learned that she needed blood.  This was unexpected, which made the day long.  Good News---her CMV reported undetected, labs have been known to be inaccurate in the past so I wasn't going to celebrate...I requested a confirming lab to be drawn.  The confirmation lab paralleled the first.  YEAH!!  The doctors told us to cut back the gangcyclovir infusion to twice a day.  This will allow all of us a bit more sleep.  Her zoster virus shows a slight detection but nothing to fuse over.

Counts Jan 30th:
ANC 2700
Hemoglobin 6.6
Platelets 134

Friday Jan. 31st.  We called the doctors because Alice will vomit up to 12 times a night and several times throughout the day.  Her nausea has always been bad, but this is obviously not right.  We requested that we stop the TPN (IV nutrition).  Immediately she stopped vomiting all together at nights, once the TPN was eliminated.  Alice still vomits during the day on average 2-6 times.  It is very tricky getting all her oral medications to stay down between such nausea.  Currently she is taking between 10-12 oral medications, in which some are 2-3 times daily.

Clinic on Monday Feb. 3rd.  Doctors have gone back to neupogen everyday because her white count dropped.  Her liver function labs are elevated...not sure why.  Tyler and I think it is due the TPN.  All the while she is taking a TPN holiday she is still on IV fluids to keep her hydrated and in balance.

Counts on Feb. 3rd:
ANC 100
Hemoglobin 11.9
Platelets 87

Alice will go back to clinic on Thursday Feb. 6th.  Hopefully her CMV level will be better.  She is such a cute little trooper through all this.


First time on the ice

The mask was her idea of course

She ate half a kipper snack in clinic and for the first time in months food stayed in her tummy...looks like kipper snacks are the key.


  1. How frustrating and complicated. :( Praying it gets better soon. I had no idea that TPN could cause vomiting like that. Caleb's stomach doesn't empty into his intestines fast enough, so that's why he would vomit multiple times a day for the first 3 years of his life. The typical treatment is erythromycin, but it didn't help Caleb. He now takes augmentin twice a day and it has literally saved his life. Praying you get answers for Alice soon. <3

  2. I'm sure blog posting gets hard and you are so busy, but we wanted to say that we check up often and my kids pray for Alice daily and have learned a lot from your families journey, so, thank you! -Chelsy