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, June 25, 2012

Alice in Clinic & Natalie's Feeling Better

Today in Clinic Alice received an infusion of IVIG, which took most of the day.  She also received a nulasta shot.  Her ANC was only 200 so Dr. Pulsipher felt it would be a good idea to give her a boost.  Between the IVIG and the nulasta she will have more protection.

A few days ago she broke out with a mild rash on her face, but today when I saw her it looked much better.  She had been in the sun a bit the day it appeared, so we think it's from the sun...considering she hasn't been out much.

She was happy to see me when I met her and Tyler in clinic.  I stayed with Alice in Clinic and Tyler went back and forth between Natalie's room and us. 

As for Natalie, she is doing wonderfully.  Her high fever was a one time thing so far.  Maybe the antibiotics they gave her upon arrival Saturday night caught whatever it was quickly or the doctors suggested that she may have had a respiratory virus.  So far, all the cultures and tests have been negative.

They did a chest x-ray yesterday and the radiologist suggested to have another echo-cardiogram done because he suspected an pulmonary artery extension.  The bone marrow doctors didn't see the same concern as the radiologist; however, to be safe, on Sunday she received an echo-cardiogram.  It was good and healthy....phew!!!  AND...she cooperated very well for the technician--last time it was very difficult and the testing was a failure (she wasn't feeling well then, but managed to complete the test the second time in her room).  I was so proud of her.  Natalie you are SUPER GREAT!!!

Today she played games, ate yummy gluten free and dairy free food from the cafeteria.  I was impressed how well the cafeteria accommodates for individual needs.  They did a fine job making it tasty!!

During the past several months Tyler and I have experienced a lot of changing emotions, some challenging and difficult but mostly we have felt peace, hope, love and encouragement.  To sum everything into one feeling it would be that of gratitude.

I wish I could sit with each person who has helped our family.  I would share details of how amazing this journey has been for our family.  Amazing....because of the kindness and support we have received.  Tyler and I are just ordinary people, but truly extraordinary things are happening because of the selflessness of so many.  For example, when I come home from being at the hospital and I'm feeling exhausted, overwhelmed and basically spent...I discover upon arriving at home that something is waiting.  It's a note from someone, a package of fun, a warm meal, an uplifting message, a laundry basket full of clean folded clothes--what ever it may be it's sweet and received with a heart that wants to press forward and stand a little taller....and this is what is extraordinary--finding strength though the service and sacrifices of others.  To so many THANK YOU for coming to our rescue...we love you!!! 

Our warm meal tonight was sweet pork enchiladas.  It was wonderful and healthy, the children ate more than normal...I was even emotional watching them gobble it down, because of the gratitude I felt.  Blair said once he finished his meal that he would like to eat more brown pigs for another day.  I assume he called the pig brown because the pork wasn't pink like a pig it was brown.


                                             Natalie in Cardiology for an echo-cardiogram

                                             She was given a stuffed frog for doing so well

                                          Alice loves to dress Evie up in all her princess clothes

1 comment:

  1. Hi, you don't know me and I personally don't know you, but I found your blog through Single Dad Laughing and have been following it for months (hope that's not too weird), and it is very inspiring, and humbling. The other day I was shopping at Wal-Mart and while checking out I saw a little poster with Alice on it asking for a donation. Whenever I go through the line I can't help but donate something to your cause because I know every little bit counts and I can't sit at home with my healthy baby without thinking of your girls and all they have suffered and continue to go through. Reading posts like these and other ones always makes me want to hold my little girl close, and be grateful for every moment I have. You're both so strong and give others hope for when they have trials to go through that seem too hard to endure. Thank you.