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.

Sunday, September 29, 2013

Coming Home


Yipee....We are coming home!  Alice is happy to go home, she misses her family; however, she is glad that she gets to return to the hospital in 9 days.  I'm sure after this next hospital stay she may change her mind about how much she loves to be at the hospital...she will be quite ill--but who knows, she may still find ways to like it.  The ICS staff have played a HUGE role in her loving the hospital.  Many thanks to them!

She wanted to dance for Evie.

Singing her favorite song.

We will come back to clinic on Wednesday and check her platelets as they have been dropping sooner than we expected.  With the infusion of platelets yesterday they bumped up into the 70's.  Hopefully this will hold her over until we come to clinic on Wednesday.

Alice's nurse Shannon took this picture of her...Alice later took 12 pictures of Shannon.

getting ready to go home.

Evie at last!
These girls got dressed with t-shirts, swimming suits and tutus.


Saturday, September 28, 2013

Last Day of Campath

Alice did awesome today...I was so worried that the bigger dose of Campath would be too hard for her and cause a terrible rash.  She was happy and well the whole time.  The infusion lasted 10 hours.  If she does well tonight we might be able to go home late tomorrow night or Monday morning.  We had a couple vistiors today, and that was nice, Amber came and then Michal and Roslyn stopped by. 

We Skyped was great. 

Alice did receive platelets today.  This was a bit surprising to us as we didn't expect her platelets to drop so quickly.

Her recent counts are as follows:
9/25--Platelets 124, ANC 400
9/26--Platelets 92, ANC 1000
9/27--Platelets 26, ANC 800
9/28--Platelets 12, ANC 800 (platelet infusion required)

Michael, Alice and Roslyn

Friday, September 27, 2013

Evie The Nurse/Campath Rash

I took the videos a week ago of Evie giving the girls their medicine.  They are such great sports to let Evie do this...honestly Evie is crazy about it.  She can be very insistent...and so we all give in to Evie and cooperate with her demands of being Nurse.

Today Alice did alright with her third infusion of Campath.  Each dose gets bigger and infused over a longer duration of time.  Today she developed more rash on her body.  It was worse than yesterday, but thankfully the rash responded well enough to the hydrocortizone and Vistaril.  I really hope tomorrow's dose won't be too much for her.  It will be the highest and last dose.  Of course the real trouble from this drug will present itself in a week or two.

The schedule of Campath is as follows.
9/25--3mg infused over 2.3 hours
9/26--10mg infused over 9 hours
9/27-- 15 mg infused over 8.5 hours
9/28-- 20mg infused over 10+ hours

Tyler and I switched places today.  We were happy to see each other.  He was ready to go home, but didn't want to leave.  He kept saying...I don't want to stay, and I don't want to leave.  He wanted to be home but didn't want to leave Alice and I.

Alice is still on target to go home Monday morning if all goes well.  The nine day break will be good for us as we prepre for the long stay.

More news tomorrow.


Thursday, September 26, 2013


Today Alice did well enough. There wasn't much slowing her down as we did puzzles, painted and danced to some of her favorite tunes from a synthesizer that reminded me of those manufactured in the 80's. I searched for the pre-loaded tunes hoping to find that all-time classic theme from the movie Beverly Hills Cop. Surprisingly, it wasn't on there and I lost interest in playing the synthesizer. Alice however let the bossa nova tunes roll and danced to it for an hour or so.
The Chemo did cause a rash today and Alice complained of being itchy until the steroid cream was able to help her out. Other than that there really wasn't anything that was out of the ordinary except that the doctors were surprised of how much energy Alice had throughout the day. I recall in her first "tour of duty" the chemo not taking effect for about a week. I'm assuming it will be the same way this time too. 
It was really surreal walking into ICS yesterday. Many familiar faces were welcoming to us and it felt good in a strange way to be back. I understood what the routine would be and I felt comfortable. That is, I felt comfortable up until I heard the first three sequenced beep from the machine telling us an infusion was done. It was all coming back to me could I have forgotten?

This is a time lapse of a few hours out of the day. 


Wednesday, September 25, 2013


Wednesday Sept. 25, 2013

Welcome to ICS Alice!!!

Alice has been so excited to arrive here in ICS.  Tyler left at 7:00 a.m. for the hospital.  Check-in was 8:00 a.m.  The sunrise this morning was magnificent, it looked like a brilliant sunset.  Alice admired the sunrise  as she and Tyler loaded the car.  She gave each of the kids a hug before she left.  She had to wake them up to say good-bye.  It was precious and I got it on video.  
Her first dose of Campath completed late afternoon.  It went well enough, however, tomorrow's dose will be given slower as Campath can drop your oxygen levels, and her levels did drop a bit while it was being infused.
We worry about her respiratory condition in the coming months as the chemo therapies she will receive have known side effects in this area.
We are going to think good positive thoughts and take it one day at a time.
It's hard to be negative around this "Shinning Star"...just look at those pictures. :)  It has been decided that the theme for Alice's room this time around will be stars.  She wants her room decorated with lots and lots of stars.  Her favorite song to fall asleep to is, "I am like a Star Shining Brightly".  

I was so happy to hear she slept through her first Campath infusion.

The day has been strange for me.  I have missed Tyler and Alice.  Only one day, and I already miss them.  Tonight around the dinner table when it was time to eat and take turns talking about our day, we called Alice and Tyler to include them in our dinner conversation.  Alice is usually the one to remind us to talk about our day.  When it was Alice's turn we put her on speaker phone and it felt like she and Tyler were with us.  FaceTime/Skype is going to be a good thing again at our house.

After dinner Natalie insisted on having a somersaults contest.  She claims she has already done a trillion, two hundred and forty n

ine summer-salts in her life time.  All I could say was...WOW!  
We all sat around and counted while Natalie began the contest; around the family room Natalie somersaulted in circles 201 consecutive times.  It was making me dizzy watching her.
Blair was up next; if you have ever seen him do a somersault you would bet that completing 10 would be a challenge.  He often gets stuck half way in a head stand.  The rounding of the back is rare as he falls over...just imagine this in your head.  Then imagine him doing 219 in a row...I laughed so hard and could barely count.  I kept thinking he would stop but he didn't.  I asked many times if he was okay, he just smiled and said yes.  When he sat on the couch he said, "I feel light."  Maybe it could be harmful...hmmm.
Matthew was next and completed a grand total of 12.  Apparently somersaults aren't his thing.
And this is what we do for fun! 
Natalie wants to know if there are any kids out there who want to challenge she and Blair's record....minus the Trillion...Tyler and I are not sure if that number is accurate. ;)
*No one get hurt while trying, please.*

Going Back Two Days--Monday Sept. 23rd  (Clinic)

Alice had her final tests done before transplant.  She had a psychology exam, and a final health and physical.  Tyler and I received more pharmacy education regarding the chemo therapies and other medications that will be used for this transplant.  Also we had a final conference with Dr. Boyer regarding details and such for the upcoming months.  
Having a ham sandwich in clinic...her favorite food.

While blow drying her hair one night I mentioned to a friend that if I kept brushing while blow drying, her hair might dry straight.  Alice looked up at me and said, "Mom, I want to be the new Alice."  So I made her the new Alice with straight hair.  It was cute and fun, but we still love the curls more.  She later said after the next bath, "Now I'm the old Alice."

Saying Bye to some of our favorite cousins....Malia and Maria Schlappi.

They lost their balance hugging...and started falling back.

And went down.

Tuesday September 24, 2013 (Chemo Eve)

Just having a little family night meeting before Alice goes in...making sure everyone knows what their assignments will be for the next while and discussing how we will prepare for each day.  I would be lying if I said it was successful and productive.

Thank you to everyone for your encouraging words and well wishes...especially your prayers.


Friday, September 20, 2013

Big Cottonwood Marathon-Clinic-Biopsy

Wednesday September 25th Alice will be admitted for Chemotherapy...if she tolerates it well they will let her come home for 10 days.  On October 9th they will admit her for the rest of the Chemotherapy and Transplant is scheduled for October 17th.  She will remain in the hospital (ICS) until she is recovered...approx. 6 weeks.  Her donor is a male in his 20's...we don't know where he is from.

Saturday September 14th

Tyler ran the Big Cottonwood canyon marathon.  He said it was really hard, but he did it.  He ran it in 3 hours and 6 minutes.  He was running so fast.  His average time per minute was 7:07. That is cruising.  He had a blister that came on around mile 12.  He ran through the pain.  If it were me I would have stopped, taken off my shoes, found any reason to walk or stop.  I think a 5K is a serious race.

I don't know how he can be so determined.  Impressive.

17 miles in the canyon

where's dad?

so anxious to see dad at the finish line

Natalie asked 50 times..."when is dad coming?"

Finishing Strong....3 hours. 6 minutes

Tyler with Michael....they must be related.

Sunday September 15th

Natalie came down with a fever tonight.  It came out of nowhere and shot to 103 degrees quickly.  I did all my initial checks---lungs, ears, oxygen level.  Once the Advil and Tylenol began working she was fine and it didn't return the rest of the night.  We are working hard to keep her sinuses under watchful care as well as thinking of anything else that could be contributing.

Natalie has been having a very difficult time in school.  She is LOST and behind.  I have been checking her out of school an hour and a half early each day (Tuesday-Friday)...I take her to the city library, and we work together one on one.  We review and learn new things.  It's amazing how much learning can happen when she and I are alone.  She needs so much help.  I worry for her, as the next few months pass.  I will not be able to provide that for her regularly because I will be with Alice in the hospital rotating with Tyler.  Hopefully we will find some sort of rhythm during this time to meet the needs of each of our children.

Why do Mom's worry about EVERYTHING....I mean EVERYTHING, down to the smallest detail.  I have to admit the past several weeks have been such a struggle for me as I try to filter away thoughts in my mind that keep me from thinking clear and being productive.  I have been letting the small and insignificant things cloud my mind and influence my behavior.  I need to RELAX and trust in Heavenly Father more.  It's been hard, because I struggle with the possibility that as we start this process there is no turning back, and would if...Alice doesn't come home from this.  She seems so healthy at the moment, but we know it's just surface health and she has been very blessed to be this far in her condition.

With that said, I know this process is normal and inevitable, we will find strength in each new day and there is always something each day in which to be thankful for.  Tyler and I will hold tight to what we believe and focus on being united.  We know that everything will be always is.

Monday September 16th

Alice had clinic today, Labs were great.  Platelets 115, Hemoglobin 10.5, and ANC 2100.  He platelets jumped up a lot.  It usually takes them the longest to respond to the steroid.  It seems as though the steroid is working to recover all her blood lines now.  We feel better each week about her upcoming transplant.

However, with that said we're still worried about doing this thing over again.  Of course we are worried, we've done this before and we know what it's all about and we know the risks, etc.

A few nights ago I was lying in bed (the night before Tyler's marathon), I made a decision that I needed to relax and try to let peace replace my fear.  It felt so nice to allow my mind to settle down and focus on the idea that everything will be okay.  The next morning I woke up with a giant cold sore on my lip.  My stresses must have surfaced somewhat.

Alice also had a hearing test, EKG and ECHO today.  She was so cute and did everything she was asked to do, thankfully, because it was a long day of testing.

In some of these pictures it almost looks like Alice has a black eye...she did her own make-up before clinic.  This time she did have permission from me.  Sometimes these little ones just need to have some yeses and not all noes.

This is why Alice loves the hospital...they are so good to her.


Hearing Test

In the evening we went to Grandpa and Grandmother's Fish's house for a wishing Alice well party.  It was a sweet moment for Alice to see all her family before we spend the next couple months in the hospital.

Her best buddy cousin Cooper

She was the star of the party

Tuesday September 17th

Alice had to be at the hospital early today for her procedure in RTU (rapid treatment unit).  She had a bone marrow biopsy done.  It went well.  Later in the afternoon she had scans (CT).  Hopefully everything will look good.  These tests are all done prior to transplant.  It helps the doctors get a good feel of her baseline before it all changes with transplant.  Also they want to make sure she is in good health before they proceed with the chemotherapy.

Looking pretty good after a bone marrow biopsy...we had a little picnic lunch on the patio while waiting for Scans.

Max and Claudia brought this darling little bird whistle back from Peru.  Matthew let her borrow it for the day and she blew that whistle all through the hospital in hopes that someone would think there was a bird in the hospital and try to find it. She had some cute reactions from many and she felt quite clever.

Wednesday September 18th

Tyler and I woke up so happy this morning because we didn't have any planned doctor/hospital visits....until we realized that we needed to take Natalie to the local pediatrician due to a fever that came on again.  He checked her ears and they looked good.  Our plan is to try some nasal washes, we hope this will make a difference.

Thursday September 19th

Tyler surprised me tonight and took me on a date.  We shared the evening with Mike and Jill Simmons...we couldn't have been in better company.  Tyler and Mike had planned this date night a couple weeks ago without telling Jill and I.  They took us to Sundance, we had dinner, and rode the Moonlight Lift.

The moon was full, the air was crisp...the lift was amazing.  It was absolutely beautiful.  We were bundled up and had hot cocoa while on the lift.  It was so refreshing as we reminisced about the good ole Ricks College days and so much more.

Truly an evening to remember...and at a very needed time for me.

Also today Natalie received another set of immunizations.  Normally I would be very afraid of this, but I felt good about it.  Her immune system will be able to use the immunization as a jump start to specific areas that need to be activated at this moment.  It was of course an ordeal but it's done and she did well.

Friday September 20th

Alice had some more labs and tests today at Primary Children's Hospital. Tyler and I went together as we had more discussions involving the upcoming events.  I was so scattered brained while there, I forgot to take her to the BMT clinic to check a cyclosporine level they had requested because earlier in the week it was missed.

We did see the ENT Dr. Park and he was able to clean her ears out very well.  Apparently her ear tubes fell out a long time ago and the tubes were stuck in her ear canal continually building wax around them.  It was altering her hearing test.  Once her ears were clean the hearing test was repeated and the results were significantly better.  I was so happy to have them cleared.  Now we will be able to see her ear drum in the event they become infected or something.

She did say. "Mom, I can hear now."

I can imagine her statement is true...after seeing what came out of her ears.  I'm sure she will appreciate the new change.  She was so good to hold still and let Dr. Park do what he needed to.

This past week has been super busy...this post is long.  When Alice starts transplant I will post more often and hope to stay on top of the blog.

Thanks again for your prayers and support.


Monday, September 9, 2013

Another Quick Day in Clinic

Alice soared through another week of no infusions.  We are so happy the steroids are doing their job.

Her counts are:  Platelets 47, ANC 600, Hemoglobin 9.9

For Alice this is great...for anyone else these figures are horrible.

We learned today that her donor has been contacted again, he is still available and will be ready by mid-October.  Her preparatory Chemo regimen will start the last week of September and will last for three weeks.  The first week of Chemo the doctors will allow her to be treated outpatient.  After that first week they will admit her for the long hall.  Including her prep regimen, transplant, and recovery her estimated total hospital stay is expected to be 7-9 weeks, if all goes as planned.

More dates and details will come next week.

In the meantime, we will pray for her donor to be healthy and well as expressing great gratitude for him.

Play time in clinic...she insisted on the tutu.

Friday, September 6, 2013

Clinic, Surgery, Cascade Springs

Tuesday Sept. 3rd. 
Alice had a record day in clinic.  She did not require blood or platelets.  Her platelet count was 29, still low but not low enough to need an infusion.  She will have a blood draw over the weekend to make sure that it hasn't dropped too low.

When Alice came home she ran to me and said, "Mom, I got no platelets and I got no blood".  By her statement it would seem the contrary to celebrate, but of course I knew what she meant.  It was so cute.  She shared the good news with everyone.  How strange it seems to contemplate the things she was saying.  To hear a four year old brag to others that she didn't need platelets or blood like she just won a soccer game or something was so strangely darling to me and sad at the same time.

This is life as we know it...and to Alice it's as normal as any other life out there.  Each night when she says her prayers, these are her words, "Please bless that I can get back to the hospital and bless Natalie to get better".  Oh Alice how you love the hospital.  We are grateful for the fact that Alice loves to be at the hospital.  How much harder this would be if it were a constant fight and struggle for her to be there.  Tyler and I talk of this often and truly appreciate this blessing.

Wednesday Sept. 4th
The morning came quickly for me.  I woke at 5:00 a.m. and began dressing and preparing for Natalie's early morning surgery.  I woke her shortly after to bathe her and give her all her medications before she could no longer take anything by mouth.  She was so helpful and cooperative.  Originally her surgery was scheduled for late afternoon.  When the same day surgery called to inform me of the time, I kindly asked them to bump us up if anyone cancelled.  Often times people cancel.  I was so excited when they called back and told me they have switched her to the beginning of the schedule.

Dr. Muntz did a great job placing the tubes in her ear.  He also took a glance at her lungs and sinuses.  Her lungs had some thick mucous in the top.  This is no surprise to us.  Overall she looked great.  Had she not been on Clindamycin (antibiotic) already for the previous week, it would have been an entirely different story.  Hopefully with the tubes back in her ears she can avoid future infections and many antibiotics she otherwise would have required.

Early Morning and lots of waiting.

Saying good-bye to Mom

All done and too sleepy to stay awake

Big appetite--donuts, chips and cookies are not your typical post surgery snack.  This is what food services sent that was gluten free.  She didn't mind.  :)
Blair loves to give Natalie her medicine...he asks everyday and she sometimes will let him.

Thursday Sept. 5th
Today we celebrated Troy's birthday.  Troy is Tyler's older brother by two years.  Troy passed away when he was 14 years old.  Each year Tyler's family likes to do something in memory of Troy on his birthday.  We decided to go to Cascade Springs and be together as a family.  We had taco soup, watermelon and dessert. When Tyler's family first moved to Utah from South Carolina they went to Cascade Springs their first fall in town.  It has many memories for them as Troy was still with them.

After a long winding drive in the canyon this rainbow was a pleasant sight to welcome us to our destination.

Alice and Kymball got a hold of my camera.

Alice, Cooper (her best friend), Blair, Garrett and Natalie

Grandpa Fish, Aunt Kim, Evie, Addie and Matthew

Lisy, Karina, Adam, Tyler and Paul

Bentley, Amberly and Karina

Aunt JessIKA, as Alice pronounces it.

The famous tree to climb at Cascade Springs.

Aunt Kim and the kids.

Aunt Kim (Tyler's Aunt) and I...saying good bye as she leaves for South Carolina.