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.

Tuesday, November 27, 2012

The Festival of Trees--The Stomach Bug

This past week was a roller coaster.  Each one of us at some point had the stomach bug, which is in fact what Alice had when she spent the night in the hospital.  The good news is that everyone recovered.  Natalie had a hard time getting over it, but SHE DID!!  We are so pleased and happy that both Natalie and Alice have overcome yet another illness...a good sign that their new immune systems are managing.

We hope everyone had a wonderful Thanksgiving.  We had a great time being with family and it felt good to celebrate a holiday surrounded by awesome people and to be home. 

Several months ago I had an idea to decorate a Christmas tree with all Natalie and Alice's used medical supplies.  At first it seemed like a silly idea.  One that I only imagined.  The idea wouldn't and couldn't leave my mind so I decided to do it.  Not only did I decide to do it, but to donate it to the Festival of Trees.  The tree is finished and now in Festival.  Truly such a project could not have happened without the help of my sweet family.  I had a lot of help.

We started collecting supplies from Natalie and Alice then it evolved into rallying the nurses and even pharmacists into the project.  Soon I had piles of things to sterilize making them ready to turn into a Christmas treasure.

Several nights after Tyler and I would put the kids to bed; he and I would listen to politics or watch a movie as we assembled medical ornaments.

As time approached I knew I had to recruit more help.  My Mother and Father did A LOT as well as my sisters-in-law, Jessica and Amberly, and Amy and my cousin-in-law Kevin.  It wouldn't have happened without them.

I will post some pictures tomorrow.

I heard that KSL will be doing a story on the tree on Wednesday the 28th on talk radio between 1-3 "The Browser". 

I will post the results of the tree soon...if it sells and where it may go.

If you get a chance to make it to Festival of Trees be sure to visit The Heroes' Tree.  It starts tomorrow and goes through Saturday, 10 a.m. - 10 p.m.


Tuesday, November 20, 2012

Alice Comes Home--Natalie Has Clinic

Yesterday Alice came home--our fastest hospital stay ever--one night.  She was given her medications by IV while whatever she was dealing with passed.  She must have had a stomach bug.  We are happy Alice wasn't having GVHD. When I came home from the hospital the Elementary School called me to inform me that Matthew wasn't feeling well and would like to come home.  He came straight in and went to bed with a pink bucket.  He spent the evening hovering over the bucket.  I haven't seen Matthew so wiped out in a long time.

They must have had the same thing.  By the next morning Matthew was back to smack and feeling good.  He wanted to get to school so he wouldn't miss his spelling test....I never felt that way about my spelling tests when I was in Elementary School.

While in the hospital Alice received IVIG.  This will help her remain strong.  At some point we hope Alice will be able to provide productive antibodies of her own.

Natalie had her best day in Clinic ever!  This is huge news.  Not only were her counts great but she beat me in seven out of eight UNO games.  I finally captured her celebrating one of her many wins.  I was very glad she had a good she always gives us fits about going to clinic.  Thankfully her labs were accomplished by only a finger poke.  Next time (in Four weeks) she will require a needle stick.  We better gear up now.

Natalie no longer needs Spetra (an antibiotic).  Another med off the list.  Natalie has had a handful of more seizing episodes.  Her medication needs to be adjusted possibly.


A new room and a new challenge, we had races getting the magnets to the top.

Collecting goodies for her new club with Matthew and Blair...Alice and Evie haven't really been invited to the club--they don't follow the rules.

Making a paper Turkey

Sunday, November 18, 2012

Hard Morning for Alice--Spending a Night at PCMC

Last night before bed Alice said her tummy was hurting.  We brought her the pink bucket and out went dinner.  She was fine the rest of the night; however, this morning she vomited at least 8 times and couldn't keep any food in her tummy nor her medicine.  We informed the doctors and they felt it would be wise to watch her over night.

She has been nauseous intermittently for the fast few weeks.  We wonder if she may be experiencing borderline symptoms of rejection.  Her steroid has tapered to a low dose and we have begun the cyclosporine taper.  The possibility of Graft vs. Host Disease is again an option, and as always a virus is an option too.  Alice does not have a fever...this is a good thing.

She is happy and doesn't seem under the weather, however, we'd rather error on the side of caution and see that she is checked for possible problems.

Typically nausea from the chemo has long's hard to pin point things with Natalie and Alice because of their complexity.  Is it diet?  Is it rejection?  Is it an illness?  Hopefully in Alice's case it's simple and fixable.

Still no news on Alice's biopsy.


Poor Alice.  This went on and on.  My camera was in my pocket, when I saw how sweet it was that Evie was helping Alice, I had to capture it.  I then had to wash Evie's hands.  Alice and I must have played ponies and blocks for three hours as we sat on the chux pads and held the pink bucket.  When Tyler and the boys returned from church...Alice said, "I'm all better."  I am amazed at the control Alice has...when she feels the vomit coming, she will hold it in until we snag the closest pink bucket.

Friday, November 16, 2012

From Candace

Hi family and friends!

We've been working hard to get more items on our website this year so go check it out:

There are Christmas cards and great Christmas gifts.

I'm excited to announce that this year we are having a special on our website until December 31, 2012—

100% of the proceeds from the sale of The Gathering of Friends cookbooks,

of the profits from the sale of Christmas cards and word art by Candace,
and 25% of the profits from the sale of calligraphy by Julia

will be donated to benefit Natalie & Alice Fish

Read their story at

Catch Up...again.

The previous few posts are make up for the week...that keeps slipping away from me.

Happenings at Home

The funny things that happen at home...I love it when the kids are creative and come up with their own games and projects.  This time Natalie came up with her own dance.  She thought she was so funny.  When she showed me the video I laughed plenty.  This can be viewed two different ways...either she is just silly or she is bored and needs to be back in school surrounded by peers.  I think both might be right. :) 

Later Alice joined in, then when Blair came home from school he joined was a ball!  By the time Matthew got home the rest of them were too tired to make more dancing videos.

Natalie has been doing awesome with her homework.  The goal is to have her caught up with the rest of the class by the time the doctors allow her to return to school.  Her teacher Mrs. Nelson who comes to the house three days a week is wonderful and Natalie enjoys the time together.

Tyler and I have been tag teaming the rest of her homework as well as the boys' homework, usually we get this done before the boys go to school in the morning.  We seem to fight over that job, because the other job is keeping the two little girls out of the way...which means all the stinky diapers that come with it.  Morning seems to be the schedule for stinkers; which in Alice's situation, she has more stinkers than one.  Maybe this is more information than desired.  However, if we are willing to play dolls and princesses they are as happy as can be.


Mattewlina and Jacksonlina...This is what I found when I came down stairs.  They ran around laughing, thinking they were the funniest kids around.  The princess dresses didn't stay on long, they tired of them quickly...a little snug.

Matthew and his friend's true, they had much more fun being's all about fighting and swords.

Mean Knights
Who's Who?

Blair and his friend Tayler.

Alice and Evie all bundled up for a long bike ride with Dad.  They had a great time and I had an even greater time.  I was able to get many things done while my two shadows were absent.

Natalie wanted me to see her elephants:  All in a row!

A nice bonk at recess is good for your character.

Evie loves white powdered donuts from Grandpa.

Thursday, November 15, 2012

Biopsy For Alice

Today Alice had a bone marrow biopsy.  The procedure was done in the RTU (rapid treatment unit).  We love the RTU.  It's much faster and simpler than same day surgery.  Anyone who has been to Primary Children's same day surgery knows the fairly lengthy process involved in a procedure at same day.

The nurse practitioner took a small piece of the bone, inner bone fluid and some marrow to be tested.  Her little back is a bit sore, but nothing compared to the past two biopsy's that she has had.  Everything went well and smooth...until it was time to wake from the anesthesia.  She didn't want to wake up.  Being the faster unit...the patients are in and out.  She wanted to sleep longer and be left alone.  I don't blame her.  I felt bad about that.  She did manage to get an awesome nap during the one hour ride home.  When I pulled up to the house I was equally as exhausted.  I just parked the car in the driveway...turned it off and the two of us had the best peace and quit ever.  I will say that some of my favorite naps are in the car. 

The kind of naps when you don't have the energy to unload the car and face what's awaiting behind the door the moment you enter. ;)

We made it home long before we would have--had it been our routine clinic appointment.  It was nice.

I'm trying to keep my phone on me all day in the event that the doctor calls with some results.  No news so far.

While fasting before the procedure Alice told me that her tummy was talking to her and said it needs a ham sandwich.


We played bubbles, hide n seek, and Cinderella to help pass time while Alice's tummy was hungry.

Tuesday, November 13, 2012

Leg Doctor

Alice visited the orthopedic doctor today.  The x-ray indicated that it is healing nicely.  She is able to have her boot off for an hour or so in the evening...and does not need to sleep with it.  She is going to be very happy.  It will be a challenge to get her to wear the boot after enjoying the freedom of having it off. 

Two and a half weeks left in the boot and she is done.  This will make almost ten weeks total for her leg's recovery.

While talking with the doctor Alice explained to the doctor that her leg 'just broke right in half'.  She likes to be involved in the conversations with the doctors.

Thankfully this visit was snappy.  Our fastest orthopedic visit yet.


All ready to go see the leg doctor.

Friday, November 9, 2012

Happy Birthday Natalie--Evie Has Parvo Virus

Natalie turned 9 today on the 9th.  She was skipping around all day anxious for the evening to come and celebrate with pumpkin pie and family.

It was a great day.  I asked her what she wanted for dinner, she said "Green Soup"...asparagus soup.  I figured she would say that.  It's one of her favorites.  Instead of cake she requested pumpkin pie.  I can't remember the last time we didn't have a pumpkin pie for her birthday cake.

Our friend Jessie came for the day and played with the kids and helped me prepare a nice birthday meal.  

Yesterday we noticed a rash on Evie's legs, arm and cheek.  I wanted to have it examined so I took her to the doctor.  The doctor is certain she has Fifth's Disease...Parvo Virus.  I have only terrible memories of this virus.  This same virus put Natalie on her death bed several years ago.  It dropped her hemoglobin to 2.8.  She was in the PICU waiting for blood.  Two people worked non-stop for eight hours to match her blood...still it was released as a non-match but as close as it could be with the urgency of her need.

Evie has been feeling terrible, yet she manages.  It seems strange to have such a virus and just go along as normal.  We are holding little Evie more and giving her plenty of fluid.  She doesn't want to eat much.  It's a wonderful thing that her immune system is managing.  Something we will never take for granite.  We are not sure what to think regarding Natalie and Alice.  We hope this bug doesn't amount to much.    

Cousin Kennidee made Natalie a darling elephant picture.
The excitement of glass.
Showing Alice the snow through the window.
The dinner Natalie requested. 

Happy Birthday to Natalie!
What's new on Natalie...clip-ons!  She asked for earrings that don't have a needle.
A giant Jerome!
First snowfall of the year on Natalie's birthday.  She, Matthew and Blair had a great time.  They built a snowman.  Before I could take a picture of it...they knocked it down.

Thursday, November 8, 2012

Catch Up

The last two posts are back dated.  Time goes too fast, before I know it I'm a few days behind.

Wednesday, November 7, 2012

Rehab Visit for Natalie

Natalie visited the Rehab center in American Fork today.  The therapist did well helping Natalie feel comfortable.  Natalie didn't want to go, once she began the session she warmed up.  It was interesting to see how they test the cognitive processes of the brain.

The therapist was very good.  I felt good about the visit.  He confirmed that the injuries on her brain are indeed affecting the way she is able to process information.  He was able to explain the many things Tyler and I have not been able to put our finger on, even describe to another.  He gave us specifics.  The therapist is hopeful that he can teach us the tools necessary to help her brain compensate and bridge the gap that exists.  This will make a huge difference in Natalie's future.

I am anxious to get to work.

I will explain more details later, as we learn more.  It's fascinating to me.

Tyler and I are trying to be careful that we don't provide a crutch for Natalie.  As long as she works hard and views herself no different than another we can be successful.  We try not to give her excuses as to why it's harder for her to understand things.  We reassure her of her strengths and remind her that she is capable of great things, and that it's important to work hard and never give up.  We have hard days...this is inevitable.      She came to me a couple days ago in tears, after working on some homework.  She said, "why don't I get it...I can't understand."

At first I wanted to tell her that she had experienced severe seizures and therefore her mind isn't able to process information as easily as it normally would.  I wanted to take away her heartache and make it all better.  I caught myself before speaking...I immediately sat down with her and told her about the life of a Caterpillar.  She knows how Caterpillars become beautiful butterflies, however, she didn't know how they have to endure immense pain and pressure before they can be beautiful. If they skip this vital step they cannot fly and will never see the beautiful earth from another perspective.

I'm not sure how much sunk in or was understood, however, she seemed satisfied.  There will be many more  similar conversations to come, I'm sure of it.

I am reminded of how thankful I am for hard things, despite how tricky it can be sometimes to recognize.  I would be very sad if I arrived into the life hereafter and felt I didn't get to experience the fullness of victory, accomplishment, and growth .  I know Natalie has endured far more than most can imagine...she must have a great reward in store and a triumph to cherish. 


Monday, November 5, 2012

Alice's Counts Still Down

Alice had clinic today.  I left at 9:00 a.m. and didn't arrive home until 6:30 p.m.  It was a long day.  Thankfully Natalie didn't have to endure the long day with us.  Alice did well, I was proud of her.  She asked several times before we arrived if she needed a shot.  I reassured her that she did not.  I believed what I said to her, but I was wrong.  She needed more Nulasta.  She was unhappy to discover that she indeed needed a shot.  Her ANC was only 300.  The doctors are becoming more uneasy with her counts.

They are still baffled that she has not been more sick with her consistently low counts.  We are incredibly thankful for the many prayers in behalf our our girls.  Alice is doing great, you would never know her counts are so low.

The team of doctors are discussing repeating more Rituximab on Alice.  This will take some time for Tyler and I to digest.  Each decision is a challenge.  There are many decisions to make along the way.  We want to do the right thing.  Alice has given the doctors many reasons to scratch their heads.

Unfortunately Alice will need another bone marrow biopsy in order for the doctors to have some physical evidence of what her marrow is doing.  In the past (pre-transplant), the two biopsy's in which she had were partly helpful.  We hope this time around it will be even more helpful.  Antibodies are not visible under a microscope...otherwise Alice's puzzling situation would be less puzzling.  I continue to wonder if her original antibodies are causing trouble still.  The new marrow/antibodies shouldn't be the problem.   Surely, we hope to reveal the culprit.

Biopsy is planned for next week.

Also in clinic today Alice received a three hour infusion of Pamidronate, a medication to help strengthen her bones (the ability to absorb calcium).

While in clinic for several hours I managed to be productive.  I met with the physiologist, whom we are working with through this bone marrow process.  Tyler and I have many concerns regarding Natalie's cognitive abilities over the past three years...since Swine Flu.  Paul the physiologist obtained a referral from the doctor, called the rehabilitation center and had it all lined up before we left the clinic.  I knew I ran into him for a reason.  It was great.  Tyler and I feel good knowing that we can get Natalie the help she needs, while her brain is recovering from neuro trama.

Tyler had the children at home busy doing homework when I arrived.  They all seemed happy to see Alice and I.  I'm so thankful for Tyler, he is a great Dad.


Alice was so excited to order a ham sandwich for lunch...her favorite.  Just ham and mayo/mustard--nothing else.  It never gets old.

We had a lot of time to play...fifth round of hide n' seek.  She was sneaky and hid behind the IV pole.  This was a nice break from the puzzle we had accomplished six times.

Saturday, November 3, 2012


We had a wonderful/healthy Halloween.  The older three kids didn't miss a house in our neighborhood.  They may have covered the block a few times.  Natalie was determined to get the most candy...she did, almost triple.  I suppose because they used scooters and bikes they had an advantage.

The past week has been nice as we haven't had a clinic visit.  More often than not we are feeling more normal...I guess normal is relative.  It has been a few weeks or more since our last hospital stay.  We aren't sure how to feel.   When do we put our guards down and take in that big sigh of relief?  We know it's yet to come and some time away, however, we also feel much closer to where we hope to be.  Of course, we will always need to be cautious...forever, but within the next several months we might just live a fairly normal life: 
And at what point are we speaking too soon?  Hmmm....well, you can never be excited too soon. :)

Tyler and I were talking the other day regarding this subject...we have so many feelings attached to our current situation.  Some feelings are strong one way and others are mixed in the middle.  We look forward to jumping into "normal" life with both feet, although deep inside we know we will miss this time more than any.  The amount of time we have spent together truly is unique, and definitely has been most healing for everyone.
One might think after being with someone constantly, you would tire of them...the contrary is true.  Surely when life pulls each of us in many different directions, it requires more effort to stay connected.

Natalie is incredibly anxious to return to school, however, when she does, she may miss home more than she anticipates.


Mario and Luigi

A real live porcupine

Her hair is the perfect length for spiking

Alice's dream came true...she became a Care Bear, just so happened that our neighbor had a Care Bear costume.

Silly Evie

Dad working hard to have Blair's Mario pumpkin finished by Halloween night

Trick or Treating in the neighborhood

Dad and the Ladybug handing out candy...if you look real close Tyler has Natalie's iPod on his lap.  He was checking up on what is going to become of this presidential election between trick or treaters

Blair asked for a Mario pumpkin--it turned out great

Matthew carved his own pumpkin this year, Jack--he used a stencil--looks awesome Matthew

The after Halloween candy assessment--so fun to sort through

Evie was fascinated with the candles inside

One proud boy

Tyler's pumpkin...need I specify?  Tyler asked that I explain this in one word--HELLO.

Lionel and Jack...buddies
The other day Tyler sent all the kids to clean their rooms.  I later made inspections and this is what I found in Alice's room.  Life in a boot!