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, May 27, 2014

The Tooth Fairy and a Tiny Buckle Fracture

Lost Tooth, May 17 (Saturday)
WOW!  This is one proud girl, she lost her first tooth.  She was so excited that she wanted to call everybody she knew to tell them of her lost tooth.  It won't be long before a second one comes out.  Alice carefully placed it under her pillow, and unfortunately the tooth fairy forgot about her tooth, but she managed to come later in the day while Alice was busy playing.

Clinic, May 19 (Monday)
Tyler had taken Alice to clinic today for the normal routine check, she received an infusion of Pentamidine (preventative antibiotic) which she receives monthly.  All went well and her counts are great.  She will not return for two weeks, we anticipate the next visit to shed more light on her hemolysis situation.  A few days after clinic the NP called and informed us that Alice no longer requires Amlodipine (blood pressure med).  The is another step closer to where we want to be.  So, currently she is only taking 6 oral medications and zero regular IV infusions.  It's hard to believe things have become more simple.  When I think of where she was a couple months ago it makes my stomach churn, and I find it hard to imagine the amount of work it was....phew, so glad we are past that!
ANC 3200
Hemoglobin 12.4
Platelets 143

Buckle Fracture, May 20 (Tuesday)
Just a regular day jumping on the trampoline, nothing outrageous but somehow Alice landed funny on her leg after leaping over a small stream of water that was dripping from the trampoline mat.  When she came in she was crying as if something was wrong, but she quickly calmed down and took a nap.  We thought nothing of it. Once she woke from her nap she continued to complain of the pain.  She did not want to walk on her leg, we iced it and elevated it for the evening and decided that if it still hurts by morning we would take her in.  Tyler and I spent the night taking turns gently rubbing and icing her leg, pain killers didn't seem to help.  Finally by 6 a.m. she was spent and we took her to the American Fork E.R.  They took some x-rays and stated that she had a very small buckle fracture on her Tibia (left).

For the next three days she wore a temporary cast for support.  She watched plenty of movies with her leg iced and elevated.  We saw the Orthopedic doctor on Friday, they could hardly see anything on the x-ray.  Because of her fragile condition, the doctor decided to hard cast it, better safe than sorry.  Likely she will be transferred to a boot by our next visit and will only need to wear that for a short period of time.

Waiting in the E.R. for the x-ray results

A nice new wrap

Home with baby carrots and a movie

This is a picture of the computer's hard to see but there is very little evidence of a broken bone.  The supposed fracture is mid calf on her left Tibia.

Just above the knee
I wanted to take a picture of this, it's very interesting.  The lines on Alice's bones, near the joints or growth plates look like tree rings, this is called facial growth arrest.  As explained to me by the Orthopedic doctor, when the body experiences great trauma it stops growing and uses all it's energy to survive.  Each line or ring indicates a time when Alice's body was experiencing great difficulty and wasn't growing.  Sadly, it is also considered lost growth, the bones will not make up for that lost growth.  She is very short for her age, and this is partly why.  Another side effect of chronic illness/transplant.

Her ankle.

Off with the temporary.

New pink hard cast with a walking shoe.

Talent Show, May 22 (Thursday)
Natalie begged to be in the school talent show.  We actually made the sign up deadline, the last day of course, but we made it.  I was totally impressed with myself that I actually made a deadline of any sort.  Natalie chose to do some of her favorite magic tricks for the talent show.  She practiced hard and did a fantastic job.  She didn't seem nervous at all.  We are realizing that she has a passion for acting.  Maybe it's time to enroll her in a play or something.  I won't post the video of the talent show because it's too shaky, Evie was all over my lap while I was trying to film.  Also Matthew's class did a dance, it was so cute and Matthew did great.
So Cute!

Little magician in training.

Keeping up with Matthew and Blair
Matthew has been working hard to become a better baseball player.  His coach has given him some great opportunities to pitch,  and Matthew is becoming more confident at the plate.  Tyler truly enjoys his time playing ball with Matthew, and Blair when he feels like joining them.

On deck ready to bat.

Blair asks me at least 15 times a day to play chess with fact anyone who walks through the door is invited to play chess with Blair.  He loves it, and is becoming quite the player.  He has yet to beat me though.  It won't be long and he will be the president of the Chess club, we need to find a club first. :)

Blair and Tanner in a heated chess game.

Evie at the dentist.  Alice was concerned for her so she grabbed Evie's hand to provide her some comfort.

Memorial Day
Grandpa and Grandma Duncan (Lisy's Grandparents)

Bunkers came from Colorado, they have three little boys buried just across the lane from Grandma and Grandpa Duncan.  (Lisy's nephew's)
Sending boats down the creek by Grandmother's house.

Evie is determined to never look at the camera.  Those who know Evie know that she doesn't give in easily.

Blair, Landon, Kymball, Matthew

Injured Pals...Aunt JessIKA.



  1. ADORABLE!! I just love your updates! So sorry Alice has another broken bone ;( Hopefully it's not too painful!

  2. Poor baby girl can't seem to catch a break! Love that Alice :)

  3. Oh she should be proud! She just reached another milestone to growing up. Too bad it was followed by that buckle accident. I hope her legs are okay now. I hope she doesn’t break another leg or lose another tooth because of another accident. Stay safe!

    Byron Kennedy @ A+ Family Dentistry

  4. Aww! Alice looks pretty thrilled. I'm guessing she was probably jumping up and down with excitement over the tooth fairy's visit. I think she looks even more adorable with that gap on the bottom row of her teeth. By the way, I hope she has recovered from that fall on the trampoline. Though she seems very strong and doesn't seem that phased by the accident. You guys take care always! :)

    Joel Haynes @ Herrin Pediatric Dentistry

  5. Oh no! I can't believe Alice fractured her leg. I hope it didn't traumatize her in any way. Is she feeling better now? Anyway, she already lost her first baby tooth? At least, there was a bit of fun news. How did she take it? I hope she was as excited to get a visit from the tooth fairy as I think she'd be. I hope she is feeling better now. All the best to the whole family! :)

    Lucia Massey @ Dental New Market