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, August 9, 2013

A Busy Week

August 2, 2013--Happy Birthday Evie!

Evie turned 2 today.  She felt so special, she was aware that all the birthday wishes meant something.  Evie is a sweet little thing...WE LOVE YOU, EVELYN!!

August 3, 2013--Hero Party for Blair/Alice has a fever

Today was a special day for Blair...7:00 a.m. bright and early we had a hero celebration for Blair.  Soon we will post more details.  KSL will air the celebration and a bit more the third or fourth week of August.  Once it has aired, I will post the entire bobble head journey and celebration on this blog.

My sweet friend Liz took this picture at the celebration...I love it!

Alice came down with a fever this same morning.  She complained that her ear was hurting.  I called to Salt Lake.  We decided to watch and see if the fever would break on it's own.  It did!!! She recovered from her ear ache and we stayed home.  This was a bit surprising for us.  Later each of the kids had similar symptoms.  It was a fast little ear ache.  Sharp pain, fever, and then nothing.

August 4, 2013--Celebration for Evie and Alice's Birthday

Amberly invited us over for Sunday dinner.  It was yummy--as always when Amber cooks.  We decided to celebrate the little girls' birthdays together as Alice would be in the hospital for her birthday and Eive's was during a busy weekend for us.

Four candles on one side and two on the other.

Alice and Evie are almost the same size.

Of course Gluten Free...this time it wasn't so tasty.  I was just happy there was a cake. :)

Natalie provided the game for the celebration....Pin The Smile on Evie.  

Natalie came up with this on her own, it's seems as though this game is a new birthday tradition for us now...originated from Grandmother Fish.  When she made it we hadn't decided to celebrate the two girls' birthdays together.  Next year we will play Pin the Broviac Line on Alice ;)

August 6, 2013--Admit to ICS

Alice was admitted to ICS today, in preparation for her GI biopsies.  She was fasting for the procedure, minus chicken broth and Miralax bottles...ahhh!  The first day was hard for her and of course into the second.  The morning of the procedure she told the Bone Marrow Doctors that the cooking ladies were gone.  She was frustrated that the cafeteria wouldn't send her food.

We had explained to her the facts about her test and the need to have an empty belly.  She translated that into the cooking ladies being gone.

Thankfully we had some awesome activities to keep her distracted long enough to get her through.

She colored and stenciled more than ever before :)

I had my hands full giving her showers and baths all day and night...her bottom was sore from the diarrhea and requested to be washed with warm soapy water rather than wiped.  I was more than happy to do that for her.  We had some great times together.

She tucked her napkin in so nicely.  Yummy chicken broth!

Alice and the dog Annie.

I was sure to wipe down the couch, floor and Alice when our friendly visitor left.

Hooray for new Minnie Mouse pjs.

She was pretending to cook some mashed potatoes for me.

August 7, 2013--Scope/GI biopsy

Today at noon Alice had some biopsies taken of her stomach, small intestine and large intestine. The procedure went well and from an initial standpoint it looked great.  She cooperated so well and as we were walking down to surgery, she said, "Mom am I going to be Sleeping Beauty?"
 I told her she would be, and when she woke I would have something yummy for her to eat.  This made her so happy.  She is so precious, I love her.

On our way to the second floor for surgery.

Waiting in an isolation room.

Mom and Alice

She took this picture of the ceiling.

One last picture before she feel asleep.

August 8, 2013--Happy Birthday Alice/Biopsy Results/Home

Alice was so happy to call the cooking ladies and order a big yummy breakfast.  She had eggs, sausage, hash browns, and juice.
When she woke up she said, "Mom are you going to tell me happy birthday?"  I told her happy birthday all day long.  I asked her what she wanted for her birthday and she said, "I want the nurses to sing happy birthday to me."  The nurses did just that.  It was great.  They wore silly hats and filled her room...she was surprisingly shy and wouldn't look at them...after all it was her request.

Biopsy results indicate that Alice has active Grade 2 Gaft vs. Host Disease.  This didn't come as a surprise to us as we suspected it.  Her treatment for the GVHD is the same as the temporary treatment for HLH.

Tomorrow she will start a new regimen of treatment, increased cyclosporine and steroids.

Brenda, NP came in to inform Alice that she could go home a day early, Alice told her that she would rather stay in the hospital.  I quickly jumped in and ensured Brenda that we would be taking her offer and packing our bags.  Later Alice said she wanted to go home after all.  I love that she loves being in the hospital...her days in the hospital are not over and it's much easier when it's not a fight to be there.

More pet therapy...Alice asked the volunteer not to have the puppy on her just never know.  This puppy is Roxy and she danced for Alice.  It was very cute.

Singing Nurses.
Alice wanted a picture of me with a silly hat.


Happy to be home.

Before even going inside she went straight to the garden and filled her shirt with tomatoes...Alice and Evie's favorite snacks.  They can eat them all day long.  And yes it's very normal for Evie to be under dressed.  She dresses and undresses herself these days.


  1. Welcome home :) We are praying for you always ;)

  2. I'm glad everything is going well! I hope the best for you guys :)