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.

Saturday, June 28, 2014

We're Still Here

It has been 18 days since our last post...time to catch up!

Thankfully, we are happy to report that from a health standpoint things have been fairly calm around here. Natalie, Matthew and Blair spent a week at Camp Hobe'....nothing but good came from their time at the camp.  We were so nervous to send them and worried it would be too long, or that someone would get sick or homesick.  This was an amazing experience for Natalie to be immersed socially, and to meet other children with similar challenges.  She even met a few other kids with Celiac.  Matthew and Blair equally had a blast.  We look forward to attending again next year.

Some days ago we took Blair to the doctor because of fevers and a cough.  He has walking pneumonia.  Poor guy.  He is taking some antibiotics and is feeling much better.  His fevers have subsided, thankfully and his cough is minimal.  He should be back to himself in no time.  It was strange to see him pass up the opportunity to go swimming because he was too tired.  Truly one of his biggest symptoms was just plain ole tired.  He could hardly get himself off the couch.  After 10 days of this, we decided it was time to have him see the doctor.  For a while I was worried he may have contracted West Nile virus, as he was bit by several mosquitoes...the symptoms are similar.  Glad to see him feeling better.

Alice has been to Clinic three times and the Orthopedic since we posted last.  Quick summary; Her leg is great, she no longer needs the walking boot...still caution is required when outside, etc.

Clinic visits have been simple, her counts are recovering from the blood type switch over (if that is what her trouble was).  She has slowly pulled her hemoglobin up on her own.  As you can see below, all her counts have improved...ANC still strong.

Counts on June 27th:                      Counts on June 11th:
ANC 3000                                     ANC 2900
Platelets 180                                   Platelets 158
Hemoglobin 10.7                            Hemoglobin 9.5
Retic 2.6                                         Retic 4.69 (Normal Range .5-1.5)


Camp HOBE' 2014
Last Day, final gathering.

Matthew with his counselors

Alice went along for the ride.

Natalie's group

Nurse Heather

Natalie and counselors

New Friends.

Located in Tooele

Love this picture...The medicine pick-up station.  Only at Camp Hobe can you drop off your children and know that they are getting their medicine and being well cared for by doctors and nurses.  When we dropped off Natalie's list of medicines, it was so simple because the nurses deal with this stuff daily and knew just what to do.

Tuesday, June 10, 2014

Kitty Kat Bar, Happy Birthday Matthew and Camp Hobe'

Since my last post, Alice has been to clinic twice and the orthopedic once.

We were happy to learn at her orthopedic visit that she no longer needs a hard cast, she received a walking boot.   She enjoys bath time more now, as we can remove the boot; also sleeping is easier without the boot.  I guess the downside to the walking boot is making sure it stays on her.  Likely she will not require the walking boot by her next appointment in a weeks time.

We are a little discouraged to report that Alice's hemoglobin was down this past week in clinic.  Not low enough to transfuse her but likely going in that direction.  She was checked in clinic on Monday June 2nd, and by Monday June 9th we decided to have her hemoglobin checked again, just because we thought she had dropped a good amount over the weekend.  She was seemingly more weak and complaining of headaches.  So, it had dropped a little but not too much.  When we return in two days for another clinic visit we will see what her level is again.  Possibly she needs more hydration, as her IV fluids are stopped.  We try to get her to drink plenty but in reality it isn't sufficient to the IV fluids she was receiving.  We are going to bump it up with some Pedialyte.   Dehydration can cause similar symptoms to anemia.  However, in the past couple/few weeks Alice has been nauseous again, vomiting between 1-2 times a day.  Her stool is loosening and becoming more frequent.  June 4th we ran several stool labs including a whole panel of parasites, etc.  Everything came back negative including Cdiff (clostridium defficile), norovirus and rotavirus.  Is any form of dehydration causing all these symptoms, is it diet related, or could it be the beginnings of GVHD?  At the moment we feel her gut is still healing and with some more hydration and a gentle diet these little bumps in the road should smooth out.

recent counts:
ANC 3000
Hemoglobin 9.4
Platelets 184

Woah, who's idea was this?  BB gun trouble!  Happy 9th Birthday Matthew.  It's been a long time in waiting...are kids ever old enough for such things?

Just checking out Natalie's new shades.

Dropping off the older kids at Camp Hobe for the week.  Alice will be ready when she is older.  Camp Hobe is offered to kids like Natalie and their siblings.  It's a place where these kids and be like normal kids.  Swim, play, and have fun with others who understand what it is like to be sick in the hospital and relate to one another.  Also siblings are invited as they are as much a part of the journey of such lifestyles.  I was totally fine when I dropped them off, but once I came home and walked inside my house I immediately got so homesick for Natalie, Matthew and Blair.  I started crying and wondering 'what in the world did we just do'.  Tyler was missing them too.  We sat around accomplishing nothing, once we started cleaning the house we started to feel better.   Natalie was so excited and nervous to go.  We hope this will provide a great social outlet for her, having her brothers there will help tremendously.  The camp staff is amazing.  They are volunteers, many nurses (some we know from ICS), doctors, counselors, and more.  They will be in good hands.   

Have fun Blair.

"Mom, you can go now...I'm ready"

The group at Camp Hobe.

More Clinic.

Just for fun and for memories:
Every day since Alice had some bites of a Kit Kat bar last week, she has been asking for a "Kitty Kat Bar", she loved it.  It's all she can think about.  For a very long time before and after her diet returned, after several months of not eating, she wanted nothing to do with sweets.  Things have changed.  She loves chocolate, ice cream and all the things 'good' to the mouth.  She loves Honey Nut Cheerios, Marshmallow Mateys, Frosted Mini Wheats, a good fresh crispy apple, and 'Awesome Chicken' (chicken cooked in a little apricot jelly).  We try not to buy the cereal too often, usually breakfast is an egg, but she will go for the cereal anytime during the day when it is available, of course with almond milk.  Maybe this diet doesn't sound so gentle? Hmmm...

Evie and Matthew's favorite thing to eat is raw oats with milk and honey.  Blair doesn't always express his favorites, he's happy with whatever.  Sometimes he likes to just stroll into the kitchen and eat whatever was left behind from another.

Natalie is in love with all the varieties of Chex cereal, except the plain corn flavor.  Apple Cinnamon is the most desired.  Natalie will do a frozen blueberry shake with all my secret healthy ingredients above all other foods.