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, November 5, 2012

Alice's Counts Still Down

Alice had clinic today.  I left at 9:00 a.m. and didn't arrive home until 6:30 p.m.  It was a long day.  Thankfully Natalie didn't have to endure the long day with us.  Alice did well, I was proud of her.  She asked several times before we arrived if she needed a shot.  I reassured her that she did not.  I believed what I said to her, but I was wrong.  She needed more Nulasta.  She was unhappy to discover that she indeed needed a shot.  Her ANC was only 300.  The doctors are becoming more uneasy with her counts.

They are still baffled that she has not been more sick with her consistently low counts.  We are incredibly thankful for the many prayers in behalf our our girls.  Alice is doing great, you would never know her counts are so low.

The team of doctors are discussing repeating more Rituximab on Alice.  This will take some time for Tyler and I to digest.  Each decision is a challenge.  There are many decisions to make along the way.  We want to do the right thing.  Alice has given the doctors many reasons to scratch their heads.

Unfortunately Alice will need another bone marrow biopsy in order for the doctors to have some physical evidence of what her marrow is doing.  In the past (pre-transplant), the two biopsy's in which she had were partly helpful.  We hope this time around it will be even more helpful.  Antibodies are not visible under a microscope...otherwise Alice's puzzling situation would be less puzzling.  I continue to wonder if her original antibodies are causing trouble still.  The new marrow/antibodies shouldn't be the problem.   Surely, we hope to reveal the culprit.

Biopsy is planned for next week.

Also in clinic today Alice received a three hour infusion of Pamidronate, a medication to help strengthen her bones (the ability to absorb calcium).

While in clinic for several hours I managed to be productive.  I met with the physiologist, whom we are working with through this bone marrow process.  Tyler and I have many concerns regarding Natalie's cognitive abilities over the past three years...since Swine Flu.  Paul the physiologist obtained a referral from the doctor, called the rehabilitation center and had it all lined up before we left the clinic.  I knew I ran into him for a reason.  It was great.  Tyler and I feel good knowing that we can get Natalie the help she needs, while her brain is recovering from neuro trama.

Tyler had the children at home busy doing homework when I arrived.  They all seemed happy to see Alice and I.  I'm so thankful for Tyler, he is a great Dad.


Alice was so excited to order a ham sandwich for lunch...her favorite.  Just ham and mayo/mustard--nothing else.  It never gets old.

We had a lot of time to play...fifth round of hide n' seek.  She was sneaky and hid behind the IV pole.  This was a nice break from the puzzle we had accomplished six times.

1 comment:

  1. You are always in my thoughts and prayers. Keep will find answers! It really is a miracle she is staying so healthy!