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, December 17, 2012

Clinic Update and How Old Is Jerome?

Natalie and Alice both came to clinic today.  Everything went very well; even Santa came to visit at the doorway (germ precautions).  Natalie tried to blow his cover by saying that Santa doesn't wear glasses...we had to remind her that he wears them off and on...just like Mom and Dad (contacts). 

For some reason when Natalie woke this morning and even before bed last night she didn't have any anxieties or meltdowns about going to clinic.  She had a nice little pep talk by her Aunt Jessica last night and maybe that helped.  I better call Jessica and find out what she said...I've gotta know! ;)

Natalie did have labs, enough that required a needle stick.  She tried some freezing spray which may have taken the edge off a bit, however, it was still hard for her, but she did much better than the average blood draw.  We always request our favorite phlebotomist Elena.  She gets it the first time..always!

Natalie's counts are good.  Her cough is manageable and her seizing has improved over the past couple days.  The doctors talked again about the possibility of her returning to school soon.  What is soon?...we don't know, it depends.  We know it will come together when she is ready.

Natalie dropped another medication today; no more Acyclovir.  The only medication Natalie requires at this point is Keppra (for seizures) and her Asthma inhaler as needed...and vitamin supplements.

Alice still has low counts, but seemingly well.  She continues to have terrible diarrhea throughout the day and night.  Tyler and I feel like she is having some graft vs. host disease.  The doctors are not overly concerned at this point.  Alice is scheduled to start what we hope is her last round of chemo.  It is a type of chemo that is targeted only to kill her B cells.  She will not loose her hair and have the terrible mouth sores, etc. like in the past.  It will be given over a four week period and done as an outpatient service.  We will be spending plenty of time in Clinic over the next month.

We persuaded the doctors to wait until after Christmas.  She will start her first of four treatments the day after Christmas.  We pray that she will manage well and that the treatments will be successful.  We plan to run the infusion very slow and watch her carefully.


A couple days ago Natalie asked me how old  is her elephant Jerome?  I thought about it for a moment and discovered that he is almost four years old.  He was given to her by her great Aunt Patsy during a scary time in the ICU.  Natalie needed something to snuggle and Jerome came just in time.  Jerome hasn't missed  but one or two hospital stays since. 

When I told Natalie that Jerome is almost four, she said, "but mom, he looks older than that."  I told her that when someone is loved so much they sometimes look older than they are.  Then I thought for a moment and wonder I myself look/feel older than I am...I've been loving (including stressing over) you (Natalie) so much.  It goes both ways.  Jerome has needed additional stuffing over the years, has lost his arm at least twice and has been stitched back together at least three times.  There are days when I feel like I need some stitching and stuffing as well. :)  It's true I suppose, we all need mending.

Today when Natalie was in clinic, Sandy the secretary saved out a darling elephant for Natalie, knowing she was coming.  It was sweet.  Her new elephant's name is Olive, now Jerome has a girlfriend.

We are looking forward to Christmas.  There are so many sweet memories of last year that continue to pass our minds.  We have so much to be thankful for.  I wish I could share all the kind things that have been done for us...many in which we do not know who the kindness came from.  Tyler and I tell everyone that when we are still married and happy in the next life we will have everyone else to thank for it. :) true!!

Lots of fun stuff in clinic today.  They got Christmas gifts/stocking.  On Alice's right is her new cat named Scratch.

Playing Spot It.
Santa visits the hospital.  Natalie was studying him to see if he was the real Santa or not.  Even Santa has to wear a visitor badge.

Setting up the ice sculptures...I am not sure which organization does this, but it's cool.  They do it every least I have noticed the past few years.

They are making trees and reindeer, and I think Santa's sled.

Looks cold.
Alice wanted me to make her a snowman with eyelashes.
Natalie made her snowman with olive eyes, a strawberry nose and a pistachio mouth.  Yummy!
Here is Jerome...he has no idea what he is getting for Christmas.
While at Grandpa Schellenberg's house...Natalie snatched up a bag of peanuts.  I thought maybe she liked them and wanted to pack a snack for the 20 minute drive home.  She packed them for Jerome. 
This is what became of the peanuts....they will be waiting under the tree for Jerome.
I have put it off as long as possible.  She is potty training with or without me.  I didn't want to potty train her while she has a central line, however, Alice is very independent.  

I went to dinner with was great.  Loved every minute of it.  We laughed about everything...told old High School stories.  Always a good time with the girls....the time always goes too quickly, the restaurant was closing, however, we had no plans of leaving.  Left to Right.  Me, Kat, Debi, Marianne, Cyd, Heather, Mindy, Jamie, and Monica.

1 comment:

  1. My cousin when she was little ended up at the hospital for a sledding accident. I remember going and seeing her and the ice sculptures being there. That was close to 20 years ago.
    Merry Christmas. Hope it is a fun and family filled. :)