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 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.

1 comment:

  1. Wow wow WOW!!! I am praying the doctors will WORK TOGETHER!!! I am so glad you went and had such a positive experience...The Lord is taking care of you! always ;) Keep us posted!!