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, October 22, 2012

Clinic and Flu shots

Day 306--Natalie, Day 279--Alice

Clinic was a little busy today.  The girls did okay regarding their numbers.  Natalie's ANC is 1600 which is great, and Alice's is 600 which isn't great, Alice's counts should be higher because she received Nulasta two weeks ago.  The truth is that Alice's body does it's own thing.  She doesn't like to follow any rules or trends.  The doctors are very surprised how healthy she has been considering her consistent low counts.

Natalie had another x-ray today and her lungs show no sings of pneumonia.  Hooray!!  She does however cough plenty.  Her labs were done with a finger poke.  This was a huge blessing.  She is very cooperative with a finger poke.

Sometime later the happy atmosphere changed when the nurse entered the room with the flu shots.  Alice was crying because Natalie was beyond upset and was a rough 10-15 minutes.  I wanted to start crying with the girls.

Of course I was worried about giving the girls a flu shot.  The doctors had to keep reassuring me that it will be fine and it is very important they are protected.  In the past I would feel sick to my stomach about immunizations.  I didn't feel strongly either way this time, just worried because of our troubles in the past.  I had to keep reminding myself to trust the doctor as well as the girls.  I will be on watch for the next week as the girls' immune systems processes the virus.  It was not a live virus, thankfully.

Alice does not need to be seen in clinic for two weeks and Natalie a whole month.  This is another first for us!  We hope and pray that we don't have anything unexpected arise in the meantime.

The other night I asked Natalie to read books to Alice so she might become sleepy.  Natalie found plenty of cute books to read to her.  Alice said, "Natalie you're a nice sister."  Tyler and I wanted to pause the moment.  It was so sweet to see them together happily.  We wanted to capitalize on this because it's not always peaches and cream.  Both tease plenty and even being almost 6 years apart...they get at each other more than enough.  It's worth the struggles for the moments of harmony.


p.s.  Natalie is mostly on a normal diet and so far so good.  I am not sure if I want to get excited yet, until more times passes.  I hope this continues.  We are still cautious with wheat and dairy, however, I can't has become easier in regards to cooking.  I have a little more freedom and I have learned more about substituting certain ingredients as well.

My next post I should dedicate to Matthew and's due time.

When Alice comes to clinic she knows which toys she wants to play with.

Natalie keeping a heat pack on her flu shot.

Natalie wanted to enter the art contest at the school.  She is so proud of her work and has been telling everyone that she is in a real art contest.  Reflections.
Some mornings we find Evie trying to go to school with the boys.  She grabs any backpack in reach, puts it on and heads out the garage door.   This time I caught her before she left the house.
Alice asked me to take a picture of her doll because of her red smile.  I love it...dolls are always happy.  This doll and another like it have become the favorites around our house.  When Evie is around she insists on holding both together.

No comments:

Post a Comment