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.

Friday, May 16, 2014

Switching Blood Types?

I wondered after the last time that I posted, if I may be eating my words.  I mentioned that things were seemingly quiet around here and I was feeling lost and directionless.  It didn't take long, we decided to spice it up, and keep things crazy.  I've included plenty of pictures of our adventures and will give a more current update on Alice.

Tyler and I were overwhelmed and confused to learn of Alice's new warm antibody development and hemolysis which presented itself about two weeks ago.  Since we have discussed with her doctors what that really means...the latest is:  Alice's doctors feel it could be related to the fact that her body is trying to switch to her donor's blood type (A+).  This process typically happens a few months post transplant. The most challenging blood type to switch to is (A).  Alice is trying to switch from (O+) to (A+).  This is a difficult switch.  Apparently blood types (A) have more antigens and make the process tricky. Currently Alice is mixed blood, but mostly (A+).

According to the bone marrow team this is likely the explanation and the process can take anywhere from 3 months to 12 months to complete.  Does this require her to receive blood transfusions in the meantime...we don't know.  In few cases the process is very difficult and aggressive medications and intervention are required.

The good news is, this past week in clinic her counts were awesome.  In fact we were all surprised how good they were.  Aside from her good counts, she showed something promising with her ability to produce red cells.  When the body is hemolyzing red blood cells the marrow is required to work harder to keep up with the demand.  Two weeks ago her red blood cell production number was 7.25%.  This is high.  This week in clinic it had dropped to 2.13% and her hemoglobin was still good at 13.7.  A normal production rate is .5%-1.5%.  We were very happy about this.  Basically this means she wasn't hemolyzing as much, however, the blood transfusion she received of type O+ could be acting as a bandaid and making it all look good.  I won't go into more detail regarding's complicated.  We just hope the explanation of her switching blood types is it, and that it goes smoothly.

May 12th Counts:
ANC 2500
Hemoglobin 13.7
Platelets 126

Some other big improvements have occurred with Alice.  More medications have been removed.  She requires Amlodopine (blood pressure med) only once a day now.  Her blood pressure was 92/55.  Her best yet!  Reglan (stomach stimulation med) was stopped.  And most excitedly she is completely off all nightly fluids.  It has been 8 months of consistant nightly nutrition/fluids, this is huge for us.  More sleep for Tyler and I, and Alice too.  Technically it has been 2 1/2 years of nightly fluids...since her first be exact.  It's hard for us to remember when one transplant process ended and another started.

The next few months will indicate in more depth what Alice's body is truly experiencing, and we will keep an update.

Natalie's ear and cough was doing well, until last week her symptoms returned and we have put her back on antibiotics and some additional ear drops.  She has been stable from a seizure standpoint.  In a week's time she will start to feel good again.  Recently we informed Natalie that we have enrolled her into a summer school program.  She is not happy about it, but we know it is necessary.

Natalie has a strong competitive personality, she is highly motivated when she puts her mind to something.  We know that these attributes will benefit her greatly.  She will be a stronger and better person because of her struggles both physically and intellectually.  Much work ahead!!


Alice's hair is long enough for a pony tail.

Evie wanted me to take a picture of her pony tail too.

On Saturday (May 3rd) Blair decided to test out how fast his bike could go.  From eye witness Matthew he apparently was speeding at least 30 mph and caught plenty of air over the curb.  The neighbors were doing some yard work and thankfully came to his aid.  He was bruised and scraped pretty good.  Needed 4 stitches in his eyebrow and seven in his arm.  We are so glad it wasn't worse. 

Natalie and Matthew wanted to come support Blair in the E.R.

A very nervous smile.

Blair tried really hard to talk the doctor into letting him have a butterfly bandaid. hmmm...
So sorry for the graphic photo.

All better and ready to go.  

May 4th
 I definitely need to explain what is going on in this picture.  Most importantly I strongly advise all those who wear contacts to carefully rinse hands after using household cleaner and before inserting contact lenses.  I thought I had rinsed my hands enough after using a Clorox wipe, but didn't.
I had my contact in for six hours before I finally pulled it out.  Some Clorox residue was trapped under my contact lens and gradually over a six hour period it burned away the outer layer of my eye.  I noticed my vision was blurring more each hour, however it wasn't particularly painful until finally I removed the contact and my eye immediately began to burn.  It was excruciating pain.  The nerves were now exposed with the contact lens removed.  We are grateful for an awesome Ophthalmologist.  After some antibiotic eye drops, eye cream/ointment, and a few days my eye improved.  The intense pain was only a couple days, thankfully...the rest is mostly healed. 
I'm not sure why I let myself post this beautiful!  I wasn't about to wear make-up on one eye.  It's worth posting, if it prevents someone from making the same ridiculous mistake.

Alice discovered Angle Food Cake!  She loves it.  She calls it a giant donut.  We had to monitor her Angle Food Cake intake, after she ate two pieces at a time.

 Natalie loves to put on puppet shows for Family Night.  She does a great job.  Alice and Evie are her best fans.

Silly Boys!

Matthew's second grade field trip to the pioneer museum...he was so happy that I agreed to go, he stayed up late packing his lunch and mine.  Later when we came home I asked him what was his favorite part of the field trip; he said, "It was being with you".  I know he loved having me there, even though he was too embarrassed to hold my hand in front of his friends. 

Meet Anna and Elsa!

Just waiting for dinner.
The kids found a snake after their piano recital, perhaps a perfect ending to a great performance.


  1. I am loving these pictures. Miss you guys!

  2. I love you Lisy! Your stories are the greatest. So sorry about your eye, I am actually glad you shared that story cause I could see myself doing the same thing. So sad to think your eye was just burning away and you kept going about your day��