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.

Thursday, August 28, 2014

Official Results and Clinic/Labs

This past Monday August 25th, while in clinic with Natalie and Alice we received the official results for little Isaiah.  Apparently the bone marrow office received the gene testing results at the same moment we arrived to clinic. 
Isaiah does not have SCID!!!  
 I wish I could describe the feeling of relief that Tyler and I are experiencing...we have each been packing around an extra 20 pounds of weight in anticipation and worry for the past 9 months, and now to finally let it go; so thankful we thankful!  
Here's how it went:  
Doctor Boyer walked into the room and handed Tyler a piece of paper from the gene lab, like no big deal. Tyler began reading it while the doctor began to talk.  At first Tyler understood the results as positive for SCID.  I noticed that Tyler's demeanor suddenly changed, he had stress, confusion and worry written all over his face.  I was unaware of Tyler's confusion, but once he tuned into the conversation...about Isaiah NOT having SCID, Tyler instantly gasped for a breath of relief and perked up. 
This past week Isaiah had thrush...poor guy.  I will admit that when he got thrush I got nervous that maybe his immune system wasn't proper.  Thus the whole snow ball effect of emotions got away with me again, and I started to worry that he might have SCID.  Natalie had thrush as a newborn, however, her thrush took several weeks to clear up....thus an improper immune system.  Isaiah's thrush cleared up with Nystatin within 1-2 days.  It was so awesome!

In clinic this week Alice's labs were again wonderful.
ANC 3100
Platelets 194
Hemoglobin 11.4
Alice is still 100% donor!
Alice will continue to visit the bone marrow clinic monthly.
Which means....Yes it's that time.  Alice will have her central line removed September 2nd!  We are so excited for her to experience life without a line.  She is looking forward to being "free".  This particular line has lasted far longer than expected, two and a half years, we are thankful for it's durability.  She has had several PICC lines along the way too, but for Alice she has had a line attached to her for almost 4 of her 5 years of life.  Big step ahead for Alice. :)  On her next visit this means she will have to be poked by a needle for labs...that's the down side, but she can't wait to go swimming!

Labs for Natalie
Lucky Natalie she got to come along with Alice to clinic.  Not really.  She had to have lots of blood drawn for many many labs.  Natalie's yearly bone marrow check-up is next week.  It's hard to believe Natalie only needs to be seen yearly now.  Among the many labs drawn, some were for studies, others for bone marrow purposes, some for immunization titers, and lastly I requested an allergy panel, in hopes we might be able to pinpoint her hives.  By next week all results will be discussed.
I need to mention that Natalie did fantastic with the needle poke, neither Tyler or I knew it was happening, she just let the phlebotomist do it without a fuss (it helped that our favorite phlebotomist Elena did it).  I looked over and she was already drawing blood.  So proud of you Natalie!

A few funny things from the kids.
The night before we had our dear friends coming to visit we sat the kids down and told them to behave nicely and use their manners.  Natalie's reply was worth recording...she said, "So you want us to be something different?"
Alice and Evie were in the bathtub playing for a long while together...about 45 minutes.  They washed their 'My Little Pony' ponies hair a hundred times .  When they got out and dressed themselves I noticed that Evie's panties were on backwards.  I told her to switch them around.  She paused and looked at Alice then said, "I can't, because Alice will see my bum."  I guess the 45 minutes in the tub doesn't count.


Clinic for Alice and Labs for Natalie.  Don't they look so good and healthy!!

Brave Natalie!

You are a Pro Natalie.

The new fountains at Primary Children's Hospital.

Alice was throwing her money in and Natalie was trying to retrieve it,

Never a need for baby holders.
It's been a long time since we had cardboard pizza (frozen pizza).
With Natalie at school all day, we decided to cook up the gluten containing pizza that has been in the freezer far too long.
Our dear friends Annie and Woody came from California to pick up their new puppy "Hudson" and to visit.   My Brother in Law breeds Labs; it just so happened to work out that Woody and Annie were looking for a Lab.
The kids had a great time playing with all the puppies.
Good-Bye to our dear friends Woody and Annie and now Hudson!
Evie, Mariah, Malia (Cousins)
These little girls wanted to paint gloves on their arms.  Too bad it wasn't Crayola washable paint...thank goodness it was on the grass.


  1. I seriously thought to myself that if Alice's pic line is coming out does that mean I can teach her swim lessons now Then read I read she can't wait to go swimming. let me know when she is cleared to get in the pool and I will teach her to swim. I can't wait. congrats on baby Isaiah. I am excited to meet him.

  2. Wonderful! Couldn't be happier for the Fishes!

  3. Such great news to hear! I am so glad your kids are doing well. They are all so adorable!

  4. Such Great News! Especially for Isaiah. Your kids are all so cute and seem so sweet.

  5. Happy tears and excitement for Sweet Isaiah and Alice!!! We are soo thrilled and overwhelmed with gratitude for your family and these precious blessings!!! Hurray ��! He is absolutely perfect too, so cute! Congratulations, you all deserve some happy news.