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, May 1, 2014

Good Week Off!

This past Monday came and seemed strange not to spend the day at the hospital.  I continued telling Tyler that it felt like I was forgetting something.  Alice continued to ask, "When do I go to the hospital?"

So far so good.  She is doing awesome.  I can't even remember the last time she vomited.  Surely its
 been at least a couple weeks.  She eats like the rest of the kids.  I can't even describe the difference it has been for us. I will be honest and admit that I have struggled to find a direction lately.  I spin circles because I feel like I don't have an agenda of my own and now I find that gap between having to be somewhere and do so much for Alice...and not having to be somewhere and do so much for Alice hard to bridge.  Of course none of these feelings are new to us, it's a constant cycle we experience, you would think we would have mastered it by now.  Having a routine, not having a routine, having a routine, not having a's tricky.  I continue to say "I", but I believe these are Tyler's words too.

We would like to think that we are on our way to recovery and the hospital life will become less frequent. We know however, we are far from being in the clear, even a days time can tell another story.  With that said we continue to place two feet in different locations.  We feel worried to leap them both in front of us only to learn that we will fall back again; yet the excitement of moving forward is incredible, but still comes with a bit of difficulty and adjustment.  It seems silly, quite silly actually; however, the concept of changing a style of life, regardless of  it's style; is awkward and does not come without adjustments.

Anyway, we are so happy and feeling the urge to move along, thinking about Alice leading a more normal life is like a dream come true.  We hesitate to rush anything, as our track record has taught us the contrary, yet naturally the current is moving forward. :)

Natalie's update.  She continued to have drainage from her ear longer than hoped.  The doctor decided it was time to start her on an antibiotic.  Likely a regular viral process left behind a secondary infection she couldn't clear.  Her ears and cough have improved and continue to do so.  She is clearly feeling better, thankfully.  The bacteria that was grown in her culture was Haemophilus Influenzae.

With Alice feeling better, we have had more time to reflect on things, it is incredible how blessed we are, from every direction.  Often times we feel we don't deserve such blessings, yet they continue to come.


Here's to a good week of feeling better!!!!


  1. Oh my goodness, Lisy! Those videos of Alice are the cutest things in the world! So happy she is feeling better!!

  2. This is such great news...I can totally remember Matt and I struggling when it was time to be in a routine after such a long period of unknowns....of course you know that will come back, even short as it may be, your always waiting for it since it's been this way for SOOO Long!! It's a time a pure gratitude but also a time of another kind of to live get through the trial of living "normally' but how??? It will come, one day at a time I promise!! I love you!!

  3. Alice Mia Fish. You are the cutest little thing ever.