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, September 25, 2014


Okay, so many months ago Natalie asked if she could have a piano.  I told her maybe someday.  A little while later I was in a copy shop and saw a flyer to win a Hailun Piano, so I thought, what the heck, let's try it.  Well then I forgot about it, but the flyer continued to show up around the house...usually in Natalie's hands asking if she could participate in the contest.  So, FINALLY I took her into the piano store (Brigham Larson Pianos) to join the contest.  

They ask about your story as to why you play the piano, and why you love to play.  Natalie's reason is very unique.
 The story/video with the most Youtube views wins the piano.  Considering that we just joined the contest in late September, our chances are small.  The contest has been going since April and will run through the end of the year. Regardless it is a good experience for Natalie.                    

Share the video if you can, and help Natalie get more views. Thanks!
(There is no limit to how many times one can view the video)

Natalie was nervous to talk in front of the camera, therefore, she wanted to read something rather just tell her story. I helped her write her story, but it looks like I have set her up to this...ugg, anyway she really wants a to do this,,,so here goes!

Hearing Aids for Natalie

Today Natalie and I went to the Riverton hospital to have her fitted for hearing aids.  It's a process, and might take some time before she actually gets them.  She seemed excited about it, and I was happy to see her happy.  She is planning to get a colorful hearing aid, and is proud of it.

Natalie has grown and matured so much in the past several months....AND she loves to go to school and enjoys her classmates.  I think we might have found the right place for her in school.  The fact that she is happy to be there is worth a million dollars.  She truly is happier.  She is with a group of children who have disabilities.  All sorts of different disabilities.  Natalie likes to help them and enjoys entertaining them.  She appreciates their differences and understands them.  It is so sweet the way she talks about her friends...she really cares for them.  

I was unsure of the program at first, as Natalie is more advanced and needs more of an academic challenge; therefore, we met as a team (teachers, administrators, etc.) and have come up with a plan to create a balance. She will spend most of her day with the regular 4th grade general education class, which is good for her learning and social development.  Natalie has a new friend in her 4th grade class who has taken her under her wing.  I am so thankful for this sweet little girl.  She is assigned to be Natalie's peer tutor.  It's amazing to me how things seem to come together, and for Natalie she is in good hands.  


This is just a sample hearing aid...fitting for size.

Wednesday, September 24, 2014


Alice went to clinic today...her first time since her line was removed.  Thus, she had to have a needle poke.  She cried, but did well.  Also she had a flu shot.  Double poke!

She is doing great.  Labs are good.  She will continue the antiviral medication (Val-acyclovir) for another month.

ANC 2400
Hemoglobin 11.5
Platelets 198

Alice's next appointment isn't until October 20th!  I have to admit, now that her clinic visits are not every week...on the same day each week, I am having a hard time remembering them.  In fact, we missed it earlier this week and had to reschedule.  Maybe we are adjusting to regular life more than we realize.  Actually it seems more appropriate to say it is my post baby brain.  I forget everything else too. :/


Here are some updated pictures of our little man!
We can't get enough of him.  Six weeks old.

Friday, September 19, 2014

Looking back at "Life's Moments"

Looking Back

This video was made nearly two years ago by my sister-in-law, Tami.  She surprised us with such a treasure.  We love it and will cherish it forever.  The memories are irreplaceable.  

Sunday, September 14, 2014

Annual BMT, Broken Bone, and the ER

September 4th Natalie had her annual Bone Marrow Clinic visit and hearing test.  Her hearing test showed a slightly different result than what we expected.  Slightly worse.  We will have her fitted for a hearing aid in one ear and see if this helps her sufficiently.

Natalie's overall counts look great.  She is doing very well, and remains at 100% donor cells.  Her titers to the immunizations have responded as hoped.   Her IG levels are good.  One IG level which ins't most important was low, but nothing to fuss over.  We will keep an eye on this level and have it checked again next year.  However, in a few months she will need a CBC checked for follow up purposes, in which surprisingly I can't even remember why.  Lately I have had a struggle remembering everything, detail by detail.  It's a good thing the girls' health is looking up, I'm slacking off with the details...I suppose having a newborn contributes to this matter.

September 6th Alice broke another bone.  Ahh!  Some months ago we teased that Alice has only one limb left in which she has not broken, her right arm.  Well it just so happens that her right arm is the one in which she broke.  The kids were playing in the family room having a great time, laughing and running around.  Matthew threw a stuffed animal at Alice while she was running...she tripped over it and landed with her hands on the floor (carpeted floor), upon impact her right arm buckled just above her wrist.  We put an ice pack on her arm and gave her some Tylenol.  She didn't seem to complain much.  The next day it was swollen, she still didn't seem too bothered by the pain.  We decided to have an x-ray regardless, because of her history, and sure enough it was broke.  She takes vitamin D and calcium's just a slow process to recovery from a double transplant.

X-ray of Alice's right arm...just above her wrist you can see the buckle fracture, indention.
Also you can see the growth rings of missed growth :(
Hanging out in the American Fork E.R. with Dad.

She was treated right at the E.R.

September 7th on Sunday at our church Tyler blessed Isaiah.  It was a sweet blessing and a great day to celebrate him and to be with family.  We love Isaiah and can't get enough of him.  I still can't believe he is here and a part of our family.  I often find myself staring at him in wonder that I have him.  At his recent doctor appointment he weighed 8 lbs. 6 oz.  A pound and a half bigger than at birth.  Happy he is growing!

Tyler's sister Jessica took his newborn them, this was my favorite.

Isaiah's baby blessing...just outside the church.
What a handsome boy in his blessing outfit.

I think this counts for a smile.
After Isaiah's blessing I saw the sun coming in the window and I told Matthew to grab the camera...he was a great photographer, I always wanted a picture of me smiling at my baby...I know, so cheesy!
Isaiah and his cousin Parks, we are missing him!  Only one week apart.  Parks had to go home, to Hawaii.

September 8th Natalie woke at 2:30 a.m. with a raging fever of 104 degrees and couldn't breath well with out pain.  She was acting funny and gave us great concern.  It is always scary when she has a temperature so high...her seizure threshold is lowered when ill.  Tyler and I decided it wasn't worth waiting until morning to have her seen.  Her lungs are so fragile, as well as her neurological status, it's best to be overly cautious.  I took her to the American Fork E.R.  The x-ray indicated possible beginnings of pneumonia, but nothing certain.  We had the regular labs drawn and a nasal swab done to check for the new virus that has been on the news (Enterovirus D68).  The nurse placed an IV to get cultures and to administer a dose of rocephin.  Natalie did quite well and was very brave.  We went home after 4 hours and she slept until noon.  We also started her on Azithromycin; since she has not had fevers, and her cough and nose have cleared up (mostly).  I think we caught a pneumonia in it's track.

Waiting in the E.R. for x-ray and lab results...her fever just broke.

Brave Natalie once again.
September 12th Alice visited the orthopedic doctor today and received a hard cast.  Tyler asked if they had contacted the social worker yet...they laughed at the irony.  This better be the last broken bone for Alice.  I am tempted to wrap her in bubble wrap until her bones are stronger.

More funny things the kids say:

Evie said to Tyler, "Dad, what are those dots on your arm?"  Tyler said, "Evie they are Freckles." Evie said, "Why do you have so many freckles?"  Tyler said, "You will have some freckles too...soon!" Evie then examined her arms.

Natalie came to me the other day seemingly discouraged about something.  I asked her what was wrong and she said, "I don't think Heavenly Father is answering my prayers." I wasn't sure what to say but questioned her as to why she felt this way.  She replied, "Well I pray every night that you will have a good night and be able to sleep, but it hasn't worked."  I was surprised by her response and touched at the same time.  I thanked her for thinking of me and told her that some nights are truly better than others.  I then realized that I must be complaining to my children about not getting enough sleep, or it's obvious when I'm dead to the world at 8:00 a.m.  Either way Natalie has been sweet to think of me.

We were all gathered around the table doing homework, when Blair announced that he was having a hard time focusing.  He suggested that he put his pet snake in the center of the table so we could all focus better.  So, we did homework with the snake.  It seemed to help Blair, but I can't say I was too excited about it.  Blair has been so persistent in having a pet.  My brother Josh caught the 3 foot long snake for Blair.  It was originally going to be a tarantula, but they were released so Josh delivered a snake instead.  Either way I wasn't so sure about it.  If I ever find the cage empty...I will move to a hotel until the snake is joke.

I will post again soon, I have a fun video to's from two years ago--fun to look back at where we have been and where we are now.


Matthew read bedtime stories for me, Thanks Matthew!

Wednesday, September 10, 2014

Tuesday, September 2, 2014

Good Bye Broviac

Today Alice lost a huge part of her.  A part that had a bitter sweet attachment to her.  She had her Broviac line removed after nearly three years of use; it was time to say good bye to her practically permanent appendage.

On our way to the hospital, Alice said to me, "Mom, guess who else is a part of the family?"  I said, "I have no idea Alice..who?"  She said with a sentimental tone in her voice, "My line is."  It made me smile to think that she has found a way to allow her line to become a positive thing in her life.  Interestingly enough dressing changes over the past several months have become a breeze and in fact she reminded us of when it needed changing.

Alice has figured out that our remaining clinic visits will include needle pokes with her line gone, therefore she was a little reluctant to let it go.

The longer a line has been in place the more difficult it is to remove because of the scar tissue that builds around the inside cuff.  Alice's wasn't as difficult to remove as they anticipated.  Alice asked the surgeon if she could keep her Broviac line, instead we took pictures.

Tyler and I are going to feel strange each night, as if we are forgetting something, with her line gone; it has been over four years that we have had to maintain a central line of some sorts.  We are very thankful that her Broviac has endured so well...this is a blessing, it's not usually to have one last so long.

Anyway this is a major step, one that is worth recognizing.  It truly marks the beginning of a new phase for us.  We hope the goodness continues, especially as we approach the winter months.  Regardless we have come a very long way and will push forward continually.


Waiting to be called back to surgery.

One last picture.

The complete Broviac Line
The red part is the cuff that was just under her skin, the black line below the red cuff was the stitch on the outside of her skin, it was to hold her line in place on the outside, it came loose long ago.
I hope this isn't gross to look at.  Nothing seems to phase us anymore.

I saw this at Wal-Mart recently...happy to see they raised so much money.
How ironic, in this picture you can see her freshly placed Broviac Line.
Alice's very last dressing change!!!