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.

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.



  1. As a special needs teacher, I wonder if Natalie could get an "Other Health Impairment" label and get an IEP so that she can get extra help at school. I can imagine that her health impacts her education. Maybe some one-on-one time at school could help her? You can call her school and ask to talk to the special ed department chair to see if they can bring her up for eligibility. The process takes up to 65 days (with testing).

  2. #1 I can't believe I didn't see you at the marathon! I was just on the corner that turned before the finish line CRAZY!! You have every right to worry but I am so proud of you for having so much faith! You guys are going to get through this. Natalie is going to catch will take a long time but she WILL catch up. just take things one step at a time. Alice is going to be ok too...You guys are being watched over!! You are always in our prayers!

  3. Wow what an amazing week. I can't believe all your family can do in one weeks time!!! Congrats Tyler on your Marathon what an accomplishment. You are constantly in my prayers. You have AMAZING amount of faith, hope and courage. Love you guys!!!

  4. Lisy stay strong! Alice is a beautiful girl and you can see her strong spirit through all the pictures :) I pray that everything goes the best way it possibly can over the next few months for your family.

  5. We're praying hard for you cute Fish family!!

  6. You're in our prayers. Alice is such a trooper. (you ALL are). We still love to see her randomly around stores in the Primary Children's pics. So cute.