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.

Monday, August 20, 2012

Awesome News!!

Our clinic visit today greeted us with great news.  The doctors were smiling from ear to ear as they delivered the news.   Here it is....Alice's whole body chimerism went from 55% to 88%!!!  This is amazing.  This means her cells are now 88% donor.  She is now that much closer to 100%.

It's quite interesting because her body has taken an opposite approach to what is normal under her medication circumstance.  Several posts ago we expressed concern that the large steroid doses would jeopardize her graft significantly, when in fact it has done the opposite.  Being that Alice has been a wild card on every agenda thus far, it was only partly surprising to learn of such a unique trend.  The doctors were taken back and had no solid explanation for these contradicting results.  However, they were pleased none the less.

Alice's white count is 3.3, ANC 924, Hemoglobin 12.0, Platelets 125 --- Great Numbers...we'll take it!

Good news for Natalie too.  She had great numbers from her labs last week.  Whole body chimerism is 96%, T cell is 94%, B cell is 100%.  She is doing great.  Although, she still has a lingering cough, it has not worsened over the past couple weeks.  She continues to require oxygen at night.  Next Monday she will do more testing in the pulmonary function lab to analyze her lungs and airways.

I asked the doctors about Natalie's official time schedule as far as returning to school and church.  They are confident that she can return before the first year is completed since transplant.  She can hardly wait to return.  The original date has been January (for school and church), however, she tapered off the cyclosporine medication sooner than planned. The general rule is to wait until a patient is off all immune suppressants for at least three months.  If this is the case and she remains healthy she will be eligible in October this year.  Sooner than we anticipated.  Of course, it all depends on what kind of flu bugs we are dealing with this fall, etc.

Matthew set out his clothes tonight for school tomorrow.  They are lying on the ground as if they are on a body.  He wanted to make sure he was ready.  I have filled his backpack with Clorox wipes and sanitizer to donate to the classroom.  He also has sanitizer attached to his backpack, and he knows that it is to be used often.

When Natalie needs some cheering up tomorrow I will pull out one of the great activities that we have received from sweet family and friends.  Honestly, we are surrounded by tender mercies...Thank You!!


When I woke Alice today I told her to get dressed so we could go to the hospital...this is how she came out of her room.  A beautiful princess dress and the crown to go with it.

We had a princess tea party while waiting to see the doctor.

And while we said Hello to some friends in ICS she gave us a show.  She was dancing for Emily's camera.


  1. What great news!! YAY! Love you guys.

  2. adorable..absolutely adorable! Congrats on the great news too!!! Miracles are happening :)

  3. We are so excited to hear about Alice! She is such an adorable girl! Thank you for sharing. Hopefully it will just continue to be good for Natalie so she can get to school as soon as possible. We love you guys!