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 24, 2013

Clinics, Inpatient Stay, Alice's Donor!

We are still here!!!  Just behind.

I will give a quick overview of what's going on, then break down the details by separate days/events.

First of all we are adapting more to the hard news we received recently.  We are also learning more about what needs to happen and why Alice is in this position.  It is evident that her body still possess original antibodies from before transplant.  This is the main, possibly only, reason why she requires more therapy/another transplant.  In our minds we can't imagine having done a more aggressive conditioning (chemo) before transplant.

The type of SCID (Leaky SCID) that Natalie and Alice have is very difficult to treat because of all the autoimmunity involved.  It can also be known as Omens Syndrome.  It's so hard to explain, basically it's hard to rid of all the original antibodies, even with chemotherapy.  The truth is...there isn't enough information on the subject, each case is individually different in the ways the malfunctioning antibodies present themselves.

We will be working with our team here in Salt Lake as well as some other SCID experts from UCSF and Stanford to find the best solution for Alice.  More news to come...SOON.

Going back to catch up:

Friday 7th--ZOO
The hospital had a special evening at the zoo, after hours.  The kids had a great time.

Monday 10th--Alice clinic
Today Alice received IVIg, bad news was delivered as all her counts dropped.  The doctors said a second transplant is back on the table.

Tuesday 11th--Make A Wish Builder Dinner
Natalie has been asked to help participate in the Salt Lake parade of homes.  A builder is going to design a bedroom in a parade home themed after her wish to Hawaii.  We got to have dinner with the builder and home owner, discussing room design.  It was great.  Natalie will get to preview the room before the public.

Thursday 13th--Alice gets blood in clinic
Her hemoglobin was 6.  Time for blood.  She slept through some of it...and played through most of it.  The darn blood pressure cup is a bugger and she does not like it anymore.
Alice loves mustard and Mayo.

Friday 14th--Natalie Immunology Clinic
Natalie had a follow up with Dr. Chen.  She is a wonderful doctor.  Natalie's ears are becoming infected again.  We decided to give Natalie a little more time, as I have some natural things I want to try first before jumping back into antibiotics.  Dr. Chen is very supportive and understanding.
They were cold so Dr. Chen gave them some gowns to wrap in.  It helps Natalie so much when she has company on her boring doctor visits.  Thanks for coming Blair.

Saturday 15th--Alice gets a fever-inpatient stay
At 5:00 a.m. Natalie cam to our room informing us that Alice can't breath.  We knew what was going on.  Alice gets worried and worked up, starts crying, can't stop, then can't breath because she is so flustered.  She will cry quietly for a while before anyone hears her, then it turns into a panic cry.  I checked her temperature, and sure enough she had a fever.  103 degrees.  She said her ears were hurting.  I called the hospital and Tyler took her in.  The doctors ran cultures and started a broad spectrum antibiotic.  She was given a fever reducer and was fine the rest of the time.
Sometimes I wonder if she fakes a fever, just so she can play in the hospital.

Monday 17th--Alice comes home
Alice comes home from her three day hospital stay for a possible ear infection...she will remain on an antibiotic.

Tuesday 18th--SCID lunch
I went to lunch with some friends, my SCID friends.  There were five of us, we all have SCID in common (different forms of SCID), and are in different phases of our journeys.  There are only so many of us in Utah, so to be together was awesome.  I wish I had taken a picture.  We were too busy talking of course.  Two of these sweet mother's just lost their babies to SCID.  It was sweet to listen to them talk about their cute babies, and remember them. I was touched by their strength and courage.

Thursday 20th--Natalie ENT clinic
Natalie met with Dr. Muntz again today, clinic was at the U of U hospital.  Dr. Muntz said her ears look worse and advised that we place drain tubes again.  It breaks my heart to think about it.  We have been working so hard using other remedies to avoid this.  We are starting to wonder if her eustachian tubes might be damaged.

Monday 24th--clinic, Natalie has a fever
Alice's counts were okay today, except her platelets...she received an infusion of platelets today.
counts; ANC 2200, Hemoglobin 9.2, Platelets 5.  We will do Neupogen every other day again.  Alice had a hard time in clinic today.  I did too.  I was tired and less patient.

Tyler and I had been up with Natalie during the night, as she had fevers and aches.  We assume her ears have worsened.  It's time to start the antibiotic again...DARN!

We have to monitor her fevers so close as she will seize easily.

And Last but not Least...Meet Alice's Donor Michelle!!

(Her initial email to us)

Ms. Fish,

My name is Michelle, and I was the donor last year for your
daughter's bone marrow transplant.  I just received your information
from the Colorado Marrow Donor Program and would love to hear how you
all are doing.

A bit more about myself... I am completing a residency program in
pediatrics at Children's Hospital Colorado, about to start my last
year, and will be a pediatrician in the Air Force when I finish here.
I got married last year to my husband, Dave, who is a sheriff in
Denver, and it has been a great year for us.  We love to run, bike,
hike, and do just about anything outdoors.  I grew up in Southern
California and just moved back to the West after finishing medical
school at Vanderbilt.  My family is mostly still in California.

I hope you all are well and look forward to hearing from you.


Michelle with her husband Dave.

Michelle with her Mother and Grandparents

We are so thankful for Michelle, it was so exciting when we received her initial email.  We read it five times at least.  Then when we saw pictures it was even sweeter.  We are incredibly grateful for her.  Thanks Michelle!

Alice said, "That beautiful Michelle saved my life."


Here's the Wallet!...I told Alice to wait until I got the camera, once I knew what she was going to do.  If you watch close, you will see Tyler giving Evie a second hand apple core.  She isn't picky...poor thing.

Thursday, June 13, 2013

Lost Wallet and a Reminder of Hope

This week has been hard and discouraging in every way.  The depressing news of Alice this past Monday seems to be taking great precedence over our emotions...which it should, naturally.  The challenge is directing our thoughts and emotions in a way that allows us to keep a clear mind and focus on things at hand separately rather than a mesh of confusion.  It's hard to function in simple ways when the mind feels so complex and bogged down.  Productivity is an art of focus and direction, a product of deadlines...which we have none in moments like this.  It's always this way when we encounter discouraging news...then we find our footing and keep moving forward, once we realize which way is forward. ;)

The confusion of Alice's near future, the worry of what could happen, the exhaustion of fighting hard, the endless hope for miracles, the gratitude of how far we have come, and wonder of where it will take us consistently resides in our minds.  The whole process is overwhelmingly captivating.

The cherry on top was Tyler loosing his wallet.  It's just a wallet...right?  No big deal, it will show up, we can cancel a few things, no biggie.  BUT when your mind is already so saddened and discouraged a lost wallet becomes more than what it really is.  It translates into being short and grumpy.  Tyler wasn't the only grumpy person at our house. We all were.

After a whole day searching for his wallet, Tyler decided to cancel his cards and went to the DMV for a replacement drivers licence.  He was feeling a little better, however, shortly after he cancelled everything it was found.  If you wish to know, watch the video! It made me laugh, and we needed a good laugh around here.

(The Video is taking forever to upload) when it's ready I will post it.


p.s. I had a little reminder of Hope this week.  Just when I was feeling most discouraged and sad I received an email from a mission friend, in which it has been many many years since we last touched base, this friend said everything Tyler and I needed to hear and truly was inspired to write.  It reminded me that Heavenly Father is watchful.  How could someone after nearly 10 years of no contact out of the blue, not knowing our circumstances until recently, write and know the things of our heart, specifically.  I am so thankful for this person following the prompting they received.  I found more strength and once again know that everything will be okay...No Matter What!

Tuesday, June 11, 2013

Mondays were made for news like this

This will be short.

As the results from Alice's blood came back today at clinic I sat in the chair and watched her play with her toys. She looked normal, content and happy to be there. I really believed that this would be another short day in would be four weeks in a row. However the reported numbers revealed an entirely different story. Her hemo was down to 7.6....and ANC dropped from 4.5 to .2. Her platelets were just high enough to hold off on a transfusion, but she is on a downward spiral. She received more IVIG today. Her downward change was so much that the doctors feel another marrow transplant is needed sooner than later. It took my breath away. Alice will be back in the hospital Thursday to receive more blood and platelets. Lisy and I will be meeting with the doctors on Monday. Alice will go through another biopsy next week. By then we will know what the doctors have in mind for a schedule.

I know this is short and there is more I could write, but I feel low tonight. Lisy does too. Will write more when we know more.


Thursday, June 6, 2013

More Good News and Happy Birthday Matthew

June 3, 2013

Today was Clinic for Alice and Matthew's Birthday.

ANC - 3000+ (increased)
Platelets - 39 (increased)
Hemoglobin - 10.5 (slightly decreased)

Alice's counts were good enough to make us all smile.  No infusions today!! We were in the clinic just over an hour.  Alice again was unprepared to leave as she usually expects to stay a while.

Her hemoglobin dropped a little, which isn't too alarming.  We anticipate her body needing more time for the red cells to replenish completely.  The next two weeks we hope to see a steady level in her hemoglobin.

Tyler and I are feeling more and more confident in Alice's chances of avoiding a second transplant.  It's beginning to look this way, however, we are still waiting to see if the Graft Vs. Host will stay away as her marrow is beginning to revive itself.

It's hard to believe that just a month ago the thought of Alice producing ANY of her three blood lines seemed impossible.  There is plenty of unexplained occurrences in the medical world.  Our explanation for Alice is a little miracle.

Thursday June 6th

Natalie had a clinic visit today in Riverton with the pulmonary doctor.  This was a follow-up visit.  Her lungs look great and she does not need to return to pulmonology for three months...Yeah!!!
Natalie said the apt. was good because Matthew and Blair came along.

For some reason I can't write today, my words and thoughts are all over the place.  I thought I would just post of bunch of pictures of what we have been up appears as though things are normal around here.  :)

Friday Night Barn Party

Lovin the Country (near Fairview)  Good times at the Schlappi's barn.

Does he look content?
Natalie and her Cousin Marina

Evie's first time on a horse

Alice's first time on a horse--this was a little brave of us...especially considering we took the horse's winter coat off with our clothes.

Roasting hot dogs, smores, and cherry pies.

Just relaxing by the fire.

Matthew, Levi, and Anna.

Fun times with Uncle Tyler. 


 Sunday at Grandma and Grandpa's Schellenbergs...they leave for their second mission in one week.  Off to the Madrid Temple.

Alice and her cousin Paige at Grandmas.

Alice and cousin Malia.
Sunday and the Sandbox....bad combo.
 Grandma Duncan and Uncle Dean, we suggested that my grandma sit in the drivers seat for the picture.
I'm a great Aunt!

 Memorial Day 
At the park with cousins, Hailey and Marina.

Memorial Day at the Park.

Cooper and Alice

Kindergarten Graduation

The "Car Pool"

Will, Levi and Blair.  Friends and first cousins.

Last Day of School!!!

 Matthew's Birthday

Happy 8th Birthday Matthew! I always make the best looking cakes ;)

Matthew made his own birthday game with the help of Grandmother Fish.  He wanted to play pin the Book of Mormon on the Missionary.  

Grandma and Grandpa Schellenberg

Alice has been working hard all year doing her preschool work at home.  Learning Dynamics has been so wonderful, they put all the work together for Alice and brought it to her each month.  Alice even worked on homework it the hospital while inpatient...and she loved it.  Learning Dynamics called and invited Alice to be a part of their last day of school, Circus Day!  They were even willing to bring the circus to her, however we felt it would be alright for Alice to be there and see the other children.
We are so thankful for their generosity.

Her Teacher for the Day.

She's a Fish--short! These kids are a tad older than her.  If you look really close you can see that Alice and the boy next to her are holding hands...they just did that--so cute.

Watching a circus on TV

The balance beam

The parachute

Just grabbing some things for ice cream sundaes to celebrate the end of school.