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.

Saturday, August 2, 2014

Much to Share

I have had such a hard time writing this post...not because I have difficult news to share, but because I haven't been able to gather words to express my recent emotions.  Hopefully I will give my heart some justice in this text.

First of all, clinic on Monday July 28th brought more good/steady news.  Alice's counts are still holding.

ANC 1500
Hemoglobin 10.4
Platelets 211


Tyler and I proudly announce that Alice will only need to visit the Bone Marrow Clinic once a month.  This is amazing; even her Broviac line will be removed in the next several weeks.  More medications have been removed.  She no longer is taking any steroids of any sort.  At this point Alice is only taking 4 medications. An antibiotic (Septra) which is taken two days a week.  An antiviral taken twice daily and the remaining two are vitamin supplements, Calcium and Vitamin D taken once daily.  Truly I can't even describe how exciting this is.  It feels so strange to have such a simple medication routine.

Alice's hair is officially long enough to tangle...she pointed that out to me the other day, surely a reference point; she reminds us when she needs her dressing changed and she cooperates easily with the process, maybe another reference point; could it mean we are done with the services her line has provided over the years; her cute fuzzy body hair is thinning, I'm a little sad about that; she no longer wears masks everywhere we go, except places like hospitals where their is sickness around.

All of these things, including the medications and hospital visits have been such a huge part of our daily living. It seems strange that they are becoming memories we talk about rather realities we live constantly.

Which leads me to where I hope to share the peculiar emotions of my heart.  Tyler and I were contemplating recently where our lives have been and where they are now.  I tried to pin point "The Moment" when it got simpler or easier, but couldn't.  Obviously it has been ever so gradual, but yet feels so sudden that things seem to be stable and dare I say "normal".  I struggle to recall the transition of time between survival mode and now.  It just happened...all the while, what we thought were mundane daily efforts have become measurable accomplishments.  I know I have said this before, but "TIME" is magnificent.

The more I contemplate this subject the more thankful I become.  I have found myself on some occasions not being able to control my emotions.  I burst into tears and become so overcome with gratitude that it's nearly mistaken as something more traumatic than it is.  Let me try to explain what I mean. Sometimes we need to be tough and strong and hold back weakness...this is required in certain scenarios. We naturally as human beings protect our hearts from being hurt in anyway...but for the first time in a long while I don't feel the need to be so protective.  It's so refreshing to have a vulnerable heart....relieving maybe. It's like we have been holding our breath for so long and now we have taken in the rescue of oxygen.

I was telling a friend about the strange feelings that are associated with this transition.  It is hard to describe, but because we have been doing things a certain way for so long there is naturally a bit of discomfort that comes with change.  The hospital has been a very big part of our life.  We have been filling the absence of hospital life with other things.  I have to admit it is so exciting to do and feel more normal, and yet I'm a little nervous to join the fast track; that old life seems overwhelming to me at times...ironic that normalcy can be overwhelming when comparing it to three bone marrow transplants and so much more.  It's what you get used to...I suppose.  Anyway, we are grateful for the blessings we have and the stability of health we posses at this time.

Tyler and I are clearly aware and accept that fact....that Alice and Natalie will never be "out of the woods" entirely, and will also have residual dealings, but now compared to where we have been is phenomenal to report and measure.

We anxiously anticipate the arrival of our new baby boy.  We are also aware that our lives can drastically change if this little one is affected with SCID.  We would be again taking a familiar road of hardship and struggle.  It's difficult to wrap our heads around the thought of retracing our steps of transplant and to watch our precious baby experience the suffering associated with it all.  In a couple weeks we will meet this little man and then two weeks post birth we will learn of his health status.  Twice we have tried to retrieve amniotic fluid to test for SCID prior to birth, but both times the position of the baby and placenta was such that the risks associated with entering the womb were too great.

We know he is supposed to be here and with our family, no matter what---this knowledge does provide tremendous strength for whatever lies ahead.  I pray every day for his health and have keep my thoughts positive regardless.  Nevertheless, I admit that I worry about my own self if I were to learn that he has SCID.  I don't feel prepared if it were the case, but I know he belongs to us and that would get us through.

We will update the blog as soon as he makes his arrival.

As for Natalie, she is doing awesome in many ways.  Socially and emotionally we have seen huge changes with her.  She is bridging the gap between residual effects of her ill life and the new confident life she enjoys now.  From a health standpoint, she is strong considerably.  There are some things she deals with that I wish weren't so, but we are dealing with them.  She has chronic hives, and takes an allergy medication for it daily.  We have consulted with the doctors and are watching it.  She still finds the Celiac life a challenge but oh how it has gotten easier with time.  Natalie will have her yearly visit with Bone Marrow this coming September, also we will be doing another updated hearing test for the upcoming school year.  Last week she had a follow up with the neurologist and all is well, no changes in her anti-seizure medications.  Natalie has been waking before everybody each morning and reading her chapter books, she is developing a love for reading.

The following message is from Alice:

kfggggghjgjiiuhkbjuigtujugughiuyhtyujjjjuguguuutyuyyiyhtcgrgytytgyuu984ogytgooooy7yt87ry8y7o bhiy6564tffdvgvffhuurwfrtgfghfgfgfyyyyudhgfgffhdhfhhdhggygfeuyguy bffffffffmggjfdml
gkjfkkykfjghjfahwjkfjdvfhhhhhhhhhhhhhhkgkgkjhfdjhtighgj iuhjuiuiiu9tij ,,hghfffhhjfdjhfhretjhhguuhhfhgiugughbnbhjguikjbjgkiiut8ihhgbhlgliguglljggyyuryuyugllygu6yfjyghjyllluytytyllgfyybbghjjjiyiuituiuiqhubijigio  jigug

Translation: "I love all my friends because you're you, and I know you do love me so much, because you're not grumpy....that's it."--Love Alice

Here's what we have been doing lately!

She prefers to comb her hair straight.

Between these three amigos there is an imagination running wild.

A little Rhino
Beautiful morning in the canyon.

Opps, I couldn't resist.  Insuring there will be no troubles on the trail.

Tyler's favorite thing to down the canyon early in the morning.  What's 13 miles anyway?

Summer fun with friends

Caroline and Natalie.

Fun times swimming with the Reeses/Simmons.

Popsicles in a hot tub.

My very own Sprite.  Lucky Alice.

Evie Just being cute.

Movie theater with the Larsen family.

Summer school art show at BYU.
Checking out Natalie's art work.

BYU planetarium with cousins and friends.

Picnic on campus, unfortunately I left the sandwiches in the fridge...hardly a picnic. 

BYU has some awesome grass hills to roll down.

Good times with great friends.

Last day of summer school.

Natalie and her classmate.

Miss. Reid, Natalie summer school teacher.

Dollar store; shopping for each other's up coming birthday gifts.

A tea party...plenty of fun.

Matthew and Eli....buddies.
The girls way of sleeping...the last little spot on the right was either Alice or Evie, but it didn't last long.
They boys way of sleeping.

Looks comfy.

Lisy's college roommates and families.  The Larsens from Chicago, and the Ransoms from New York.  It was a great time to be together.

July 24th
Spending Pioneer Day with the Cutler's.  Jessica provided a great activity for the kids.
Putting together pioneer cabins.

Lovely pioneer cabin, Alice.  

Natalie, Addie, and Cooper

Not so excited about building a cabin...maybe just tired.

An awesome firework show provided by the Cutler kids.

Matthew loving the fireworks

Alice and Cooper

Jessica, Lisy, and Evie

The following movie Tyler put together of the kids hiking to the "G".  We were lucky to have our dear friends visiting and made some great memories together.  The hikers are; Tyler, Natalie, Matthew, and Blair.....Will, Eli, Penelope, and Lucia.  The music is especially great. ;)  It makes it seem like a Mt. Everest feat.



  1. Wow! so much great news!!! I'm so happy for you guys! Super exciting that your baby will be here in a couple of weeks. Change is always scary but it feels good once you make it through and realize that you managed the change and did great with it(: Your family is amazing, such a lucky little boy to be joining it. Good luck with everything.

  2. Fantastic news! Can't wait for you to meet your new little guy. I'm praying that he can be SCID free. No matter what, he's one blessed little boy to be part of your family. Let me know if you need anything!

  3. Congrats on the new baby! Is Alice's hair looking a little RED in some of those pics? Did grandpa finally get a reddish-head? :) We are so happy they are both doing so well. My kids still pray for Alice, she has left an impression!

  4. What a beautiful post and what a beautiful family you have! You have incredible strength, faith and love. Thank you for sharing your journey, you and your family are inspiring!