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.

Tuesday, March 26, 2013

Make A Wish, Good News for Alice and Biopsy for Natalie

Oh my, I have much to post.  I feel like there is so much information in my head and getting it into a post is nearly impossible.  I'm behind with my record keeping.  I will do my best in this post to provide enough detail.  Many people have called and asked what is happening with Natalie's fevers, Alice's transplant plans, etc.  Hopefully I can answer many questions here.

To begin we need to share the excitement around our house.  Make A Wish came this weekend to present Natalie with her wish.  Before I say more, it was fabulous!!  I will share with you again her wish ideas:

--To stay in the Plaza Hotel (NYC) where Kevin stayed on Home Alone 2.  She loves that movie
--To be an Elephant Trainer
--To go to Hawaii (to swim in the ocean with the fish, see real lava, swing on a vine, drink out of a coconut, and fly in a plane)
--To have a family sized bicycle
--To stay in a jungle hut with real elephants
--To give Shamu a hug
--To go back to school (this was during the time she wasn't at school)

Natalie's first request was granted...HAWAII!!!  Natalie is going to Hawaii next month.  She is so excited for an adventure.

Ann Gunther is the wish coordinator and she did a fabulous job.  She prepared a fun treasure hunt around the neighborhood.  As we stopped at each house we recruited more participants.  It was so cute to see so many children sharing in the excitement that Natalie has so diligently earned.

When the treasure hunters got back to the house Ann had the place decorated like a Luau.  The adults were awaiting her arrival to see if she solved the puzzle.  She told me half way through the treasure hunt she figured it out.  Each stop provided a new clue to her wish.  Creative Ann made this up in a jiffy.  Here is the copy of her clues.

#1 (home)

The Wizard received and contemplated a wish

For a very special girl named Natalie Fish.

To find his answer, this is what you must do...

Go on a treasure hunt to find your clues.

Here is a hint, you must cross the street

The Gunthers are who you will first meet.

Sing a song about Jesus, beams, and "SUN"

And a clue they will give you as soon as you're done.

#2 (Gunthers)

Make sure you wear this so your skin doesn't burn

The place you are going is hot you'll soon learn!

Your next hint and treasure is waiting for you

At the Tullis home where a trick you must do.

Count from ten backwards, ending with one

And you'll get another clue with something quite fun.....

#3 (Tullis)

This ball can be tossed with your whole family

For where you are going there's sand and there's sea!

The Arnolds are waiting, that's your next stop

On one foot for them you must hop!

#4 (Arnolds)

Natalie, dear, you’re doing so great!

You’ll quickly discover your special wish fate.

The place you are going for your vacation

Is home to the Dole pineapple plantation!

Now run to the Carmens, use your quick feet

Give Avery high five and she’ll give you a treat!

#5 (Carmens)

Though this flower is just a clip for your hair

Where you're going are real flowers everywhere!

The last person you'll visit for the clue that you seek

Is Sister Lloyd who'd like a kiss on her cheek.

#6 (Lloyds)

Kisses and leis are how the locals greet

Now go back home where friends and family you'll meet

Say ALOHA to those waiting for you

To celebrate your wish and your very last clue!

#7 (home)

Tropical fruit and drinks to share...

Just a sampling of the delights you'll enjoy there!

Your wish trip is somewhere it will not be snowing

With all of these clues, can you guess where you're going?

I wish I could just post a video of the whole thing.  I eventually plan to make a post from beginning to end of Natalie's entire Make A Wish journey.  It will be great to have.

I was standing behind her when she was in the spotlight and everyone cheering.  I heard from others that she became emotional and held back a tear of joy.  She is so good at holding her emotions.  We know she was happy.  She felt so special, and she knows she worked hard to get to this point.

Natalie we are so proud of you!!!!


Before I get to Alice's news I will finish with Natalie's happenings.  Much has transpired over the past week.  As I mentioned before Natalie has been having a series of low grade fevers.  We have been to the doctor, had x-rays, had antibiotics and such.  Still the fevers continue.  The immunologist at Primary Children's ran several tests as well as the pulmonary specialist.  All allergy testing was negative (this is good).  We were searching for asthma triggers.  Other tests such as her blood lines were good, however, her inflammation markers were very high.  CT scans and more x-rays were done today.  Natalie has severe Sinusitis.  There is evidence that some of the bone has been eroding due to the infection.  Tomorrow Natalie goes in for a biopsy of her sinus cavity to learn more about what type of infection is happening.  The sooner this is cleared the less irreversible damage can happen to the bone.  We hope it is not a fungal infection.  They are difficult to treat.  Either way (bacterial or fungal) it will require an aggressive medication.

We are thankful to discover this and hopefully it will be all better in the next several weeks, she has a plane to catch. ;)  Even if we have to travel with's still going to be a great time.

Now as for Alice...where to start!  Lately I have learned a lot about what I can't do.  I can't control a lot of things happening in our lives.  I can't control what Alice's body will do.  I can't control the timing of things, I can't control my wild emotions at this time.  However, there are things I can control.  I can provide a nice meal for my family around the dinner table.  I can hug my children longer and love them more.  I can wrap up in Tyler's arms when my fears come alive.  I can see that each day we learn something new we didn't know the day before.  I can hope, I can wish, and most importantly I can do my best.  That will have to do!  I decided that if I can be successful inside my home, with the things that I can control, than I can hand over the hard stuff to Heavenly Father.  After all He is the Master Chemist.  I know in my heart that what He wishes will be my wishes.

Now switching gears into this week.

Plans are still moving forward with Alice's second transplant.  A donor is ready and willing--Although, yesterday, while in clinic Alice gave us all a huge surprise....Now for Alice's good news....her ANC was 2,000!!!  WHAT!!  It doesn't make sense, and we are ecstatic.  Even her red cells maintained.  She only required an infusion of platelets.  If this trend continues there is a chance we can postpone transplant or possibly disregard it all together.  I can't even think about it because I get too excited and I want to make sure it's real.  It will take a few weeks in a row with such counts to postpone transplant...either way it's enough to smile about.

More to come...tomorrow is another big day.  It seems as though we have been to the hospital five days in a row with clinic visits, no wonder I get nothing done.  Although, I feel so productive just finishing meds, coordinating things with doctors and pharmacy, and keeping the family fed.  I know I must be the most scatter brained person around.  Can I be pardoned?

Again, thank you for your prayers.


The boys are super excited about Natalie's wish.
Natalie in Immunology clinic...she said she would be brave for the needle if Blair came along. She was brave!
Poor Alice's legs.  She has bruises everywhere.  We find new bruises everyday.  She bumps something and bruises. Platelets are good to have for this reason.
Alice's them.

Evie, phase 1
We have been eating a lot of chicken and bones around here.  The more marrow the merrier!

Phase 2

Phase 3

Phase 4

All done!!

Alice and Blair decided to make their own quesadillas.


  1. That is so exciting about Alice's ANC! Prayers your way that it will stay that high! I've been hoping we didn't have to see you back here so you could get a nice break from this place!

  2. Lisy, I needed to hear your testimony, and I am so glad to start my day by reading it, so thank you for sharing! You are so faithful and have such a great attitude. Congrats to Natalie on her wish!

  3. Yahoo! Hawaii will be AMAZING for EVERYONE!! I am so happy for you and especially Natalie! I am praying her biopsy goes well and you will get to the bottom of those darn fevers! What a great ANC!! We will keep our fingers crossed for Alice :) WE LOVE YOU!!!!

  4. I've Been Praying And Hoping Alice Doesnt have to go through chemo and have a second transplant. i will keep praying and hoping.

  5. Waooo! This post is super! So happy for all of you.
    Sending prayers and hugs.

  6. How exciting, Hawaii!!! I am glad you guys got some good news with Alice's numbers this week too!!!