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.

Wednesday, July 31, 2013

One More Thing

I forgot to mention that next week Alice will  be admitted to the hospital for approx. a weeks time to complete some more testing.  One test will be a biopsy of her gut and another a biopsy of her marrow, possibly.  Both are risky in her condition, therefore she will be closely monitored and will remain inpatient during that time.

Always time for a game of Hide N Seek---never gets old.

Tuesday, July 30, 2013

New Developments

I have erased this first sentence a dozen times, because I can't seem to find just the right thing to say.  We had our discussion with the doctors today regarding moving forward with Alice...however, the discussion went entirely different than we had imagined.  We anticipated them telling us that we should begin to prepare for transplant.  Although the contrary happened.

Certain developments have come to fruition.  Dr. Cowan at UCSF has provided us with some very important information; through some testing they have discovered that Alice likely now has HLH (Hemophagocytic Lymphohistiocytosis) in conjunction with her already existing SCID.  This isn't good news for her.  It does provide more answers to why she is doing so poorly keeping her blood lines up.  If in fact she has this, the doctors feel it was brought on by the processes of the chemo drugs, and many other factors dealing with transplant.  It would be considered Secondary HLH.   There will be further testing to confirm this.  

Maybe I shouldn't post about this until we have more information.  There is much for us to learn still.  I won't take the time to explain what HLH is and what it means for Alice, at this point.  I will do this in another post if and when it's certain that she has it.  The interesting part of all this, it that ironically the way HLH is treated and cured is already what is in plan for Alice. 

It is a very good thing we did not proceed into transplant earlier.  The doctors will first manage/control the HLH with steroids before she has a second transplant, this is pertinent. 

Dr. Boyer said, "Alice's situation continues to become more complex"; we said, "Is that possible?" How can it be more complex?  While driving home, Tyler and I discussed this new information, we feel that it is one step closer to where we need to go.  It's bad news, but it's news and now there are more pieces to the puzzle.  

The truth is...we are so blessed that Alice keeps pushing along.  Knowing all this information and what her body is really's a huge blessing that she is as well as she is, and happy all the while.

Okay, I have a feeling that this post makes little sense.  My mind is scattered and tired, so I will post later, and hopefully it will be more clear.

Today Alice received platelets.

ANC 1200
Hemoglobin 8.9
Platelets 3 (after the infusion her platelets rose to 53)


Dad writing in his journal and Alice playing mommy

Another favorite book of Alice's..."The Queen of France", she has me read it to her daily.  The cutest book ever. 

Dad went to the cafeteria and brought this back...she was so excited!

Super Alice!!

Wednesday, July 24, 2013

Catching Up

Lately we are having a hard time posting, mostly because of time and exhaustion.  We hope to be more diligent.  Is it true that when life delivers overwhelming challenges everything seems more difficult than it really is?  The littlest tasks can seem so enormous.

I remember in High School feeling overwhelmed about cleaning my room.  Wow...what would that be like now.  It's a good thing life comes to us one step at a time.

It's been about two weeks since our last the meantime Tyler and I have done lots of thinking, pondering, praying and worrying.  We still feel about the same regarding our situation; and that is...'not sure what to do'.  This has been very hard for us.  We hope and pray that we will be directed in the right way, and can feel comfortable with one of the options available.

As for Alice she is happy, yet seems to be slipping a little.  Her GVHD is picking up again, at least we think it is.  This will be confirmed by a biopsy of her gut next week.  Time seems to be taking precedence with Alice.  We wonder how her little body can manage so well in such a condition. We hope time continues to treat her right...we need just a little more to sort it all out.

Dr. Cowan at UCSF sent a summary of his thoughts.  He gave our doctors a list of some tests that should be done to help us move forward.  These tests were drawn this past Monday.  We are planning to do some more this next week.  Once all the results are back, more information will be available to us and hopefully the next decision will be more clear.  I would go into more detail about the kinds of test we are running...but it would take forever.

This coming week Tyler and I will both accompany Alice in clinic; we have a conference with the team of doctors to review some of the lab results that will be available as well as continue to explore our options.

Monday Dr. Boyer informed us that they will contact Alice's donor (new donor) to postpone things for now...Alice was scheduled to enter the hospital the beginning of August and have transplant on the 8th (which is her birthday).   Obviously these were plans we had made months ago, but didn't realize that it was still scheduled until now.

Status Update:

Monday July 15th: Alice's Counts
ANC 1200
Platelets 11
Hemoglobin 9.5

Alice received platelets and IVIG.

Monday July 22nd: Alice's Counts
ANC 2700
Platelets 9
Hemoglobin 7.8

Alice received red blood cells and platelets.

My sweet sister-in-law Mckenzie asked me what the reference is for Alice's counts.  She would like to know what is normal for the average person and what is considered normal for Alice on a regular basis.  I loved her idea.

Check out the new addition on the side bar of the blog for these references.  I didn't include normal for Alice, because as per the last several months her normal is consistently well below the average.

Just hanging out while getting blood.

Side Notes:

Natalie asked Tyler if she could sign up for something.  Tyler got online to see what was available. They both decided on cross country.  She was so fascinated by the idea of running.  I had no idea about their doings, until I saw her wearing her running shoes and hat with a bottle of water stretching.  I asked her where she was going..."running", she said.
Later as the neighbor and I were visiting we saw her running around the block.  She kept going and going.  When she finished she had run a mile.  I couldn't believe it.  I was so proud of her.  Later in the evening her legs hurt...Tyler iced them and rubbed them for her.  The next day she ran a mile and a half...and then the next she ran two miles--all without stopping.  If there's one thing Natalie's determined.

When having dinner, we go around the table taking turns talking about our day.  When it came Evie's turn she sang out in her loudest voice...Jingle Bells.  It was so funny and made us all laugh. I have no idea where that came from.  It was not a quiet meal from there out.

Wednesday, July 10, 2013

San Francisco

We apologize for how late we have been lately on our posts. This past week we drove out to San Francisco to me a couple doctors for second opinions on Alice. We had Blair come too so that Alice could have someone to play with while we conversed with the specialists. Overall the trip was well worth the drive from Alice's standpoint and we were also able to take in some sights between meetings.

It had been several years since that last time I had been to San Fran. Some things I missed (the cool air) and some things not so much (the parking) However I wished that we had more time to see friends who lived near by, but because of the schedule we were on with the doctors it was hit and miss with the time we would have for ourselves. We left Sunday afternoon and made it to Reno. The following morning, Blair and Alice woke up bright and early, ready to explore the place where we were staying. We arrived in San Fran early afternoon and received a call from the doctor's nurse asking us to come in that day instead of the next due to his daughter going into labor and would need to leave as soon as he could. So, we made headway to UCSF and sat down with the specialist, Dr. Cowan, for what seemed to be at least a couple hours. Dr. Cowan is well versed on SCID, however, Alice's condition is complex and will require more discussion, although Dr. Cowan provided helpful information and gave what we felt was a good discussion for what information they had at hand, he plans to continue his discussion with his colleges and also with Dr. Pulsipher and Dr. Boyer here in Utah. The bottom line was that Alice would need more chemo in one form or another to rid her body of the abnormal T-cells she still carries. We thought as much, but the questions are what kind and how much.  And again more questions with what donor to use.  This is where we hope to collide the experts in Utah and the experts at UCSF and Stanford to formulate the best solution for Alice.

Our second visit was at Stanford University, Lucille Packard Children's hospital.  Here we met with Dr. Weinberg as he too spent a good amount of time with us.  He shed new light on certain drugs (chemotherapy's) that we hadn't heard which are good for discussion.  Due to some miss communication two weeks prior, he hadn't received Alice's medical records until the day before we arrived at Stanford.  So, the night before our appointment he read the 108 summarized pages of her records, from Salt Lake.   He was entirely intrigued.  This visit was also very effective.  Dr. Weinberg suggested doing further specialized testing on Alice to help make the next big decision we make less of a blind decision.  In a nutshell, there are further steps and discussions to have before anything takes place.

We feel that if we can get all the doctors and us to agree on the same thing comfortably then we have the right and best choice for Alice.

Update On Counts:
Alice was in clinic in Salt Lake on Friday June 28th.  She received red blood cells and platelets, enabling her to travel.  While in San Francisco her routine counts were drawn on the following Tuesday July 2nd. Platelets were 30, Hemoglobin 13.3, ANC 570, Retic 6.9, by the following Monday July 8th, in Salt Lake clinic her platelets dropped to 2, therefore, received another infusion of platelets.  She was again one giant bruise.  Hemoglobin is 10. ANC is 600.

p.s. Thank you to those who helped us make this trip.

The street we stayed on in San Francisco

Family Housing for hospital families, our room was the top right room with the window open.

Our bedroom

Super Alice

Super Blair

Lunch at Patxi's, around the corner

We had pizza and bread, all the things we don't normally eat when Natalie is with us.  No diet restrictions on this trip....Hallelujah!

Where's Alcatraz?

Family housing gave us some tickets to the California Academy of was worth it.

This beautiful Blue Morpho butterfly landed on Tyler's shoulder and didn't want to leave.  There were plenty of butterflies to observe.

This is what the butterfly's wings look like when opened.

Looking for Nemo and Dori.

Japanese Tea Gardens

UCSF Children's Hospital

UCSF clinic

Lombard Street

Bottom of Lombard Street, I later noticed the bride and groom...ha ha.

The Cable Car/Trolley

Near Union Square 

In the trolley

Pier 39

Pier 39 Carousel

Stanford Children's Hospital

Blair loved the train display they had.

Blair brought his book and we read any chance we could in the car.  He loved the extra attention he got from Mom.  He would secretly place his book on the arm rest until I noticed it, hoping I would say...let's read.  Both Alice and Blair enjoyed reading aloud.

Golden Gate Bridge

It was very windy.  

Happy Fourth of July.  We rolled in from San Francisco just in time to celebrate with the rest of the family. 

Kennidee, Garrett, Braiden, Matthew, Mason, and Kymball.

Cooper and Alice

Sadie, Addie, Blair and Natalie

Watermelon is a fourth of July staple.  Aunt Lulu.

Evie loves watermelon.

Alice and her cousin Cooper blowing bubbles.

Cotton Candy, one for each hand

What happened to Aunt Amberly?

Uncle Paul's annual cotton candy production.

Aunt Roslyn made yummy apple pies.

Evie covered Addie's face with sidewalk chalk. 

The only time of year that they get cotton candy...including their own.

Jessica, Heather, Amber, and Jamie....Tyler's awesome sisters.

'My County Tis of Thee'  

Addie, Jessie, Sadie, and Natalie

Slip N Slide...including three large bottles of dish soap.
The women behind the successful festivities....Grandmother.

And the Man...PaPa.

Tyler's approval of a great fourth of July celebration.

Saturday July 6th, Matthew was baptized.  He was so happy and excited.  It has been a very busy week.

McKay (cousin), Blair and Taylor (neighbor)--if you look really close at this picture you can see what these boys ate. :)  Chocolate Chip Cookies!

Sarah and Matthew.  Cousins.  They were baptized the same day.  Sarah was baptized in Heber just hours before Matthew's baptism.  Busy Day.


It was great to be with Family on this special day.  Lots of family! :) 

This is a cute video of Blair finding adventure while waiting for the Trolley.

Just a Video from Home of Alice.