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, October 5, 2012

Natalie Came Home Yesterday

I haven't had a moment to post since Natalie came home yesterday afternoon.  We are so happy she is home.  She came home with no lines and only two additional medications.  She wanted to be home badly.  Yesterday she was still not feeling well enough to be herself and play, although she did ride her scooter for a few minutes.  Most of the afternoon and evening I rubbed her head and back.  She has had a terrible headache since she came home.  We suppose it must be from what she endured over the past several days.

Her back still seems to be very sore from the spinal tap.  Thankfully today she complained less of headaches.

We wanted to do something special today for the kids.  We took them to a pumpkin patch and let them pick a pumpkin.  It was therapeutic for all of us to be outside in this type of setting.  October is a lovely time of year.  It was perfect weather today.  I didn't even take a picture...what's wrong with me.  I need to be able to prove to my children someday that we did do something besides hospital stuff.  I suppose I was just enjoying the moment.  I wish to have a giant pumpkin patch someday...just like the children's book Spookley The Square Pumpkin.  Natalie must have been expecting Spookley's kind of patch, because she asked where all the different colored pumpkins were.  I realized then that our children have never been in a pumpkin patch...until now.

For some reason I feel like I just ran a marathon...more so an emotional marathon.  I will admit that this last hospital stay with Natalie caught me off guard.  I didn't see it coming and felt unprepared emotionally.  I remember as she was leaving with Tyler, I felt like I needed to give her an extra long hug.  I did.  Two hours later when the doctor was finally able to get a hold of me, she briefed me on the situation and emphasized the seriousness of it.  The doctors know I don't like anything sugar coated; therefore, she wanted to prepare me in the event that it became worse...she did mention this is how they loose some of their children.

The drive to the hospital was filled with thoughts of every kind.  My most frequent thought was..."Was that the last hug I would give Natalie"...then would follow thoughts of hope and trust in Heavenly Father.  I know there are many mothers in this world who have given their last hug to a child.  I wish to express my most sincere love and empathy to you.  Yes, there will be a time when a mother's arms will be embraced by those they ache for.  To me, this would be worth it all!  I was reminded of my older sister who has given her last huge in this mortal life to three of her sons.  I have amazing people in my life, in whom I admire and wish to become more like.

W express immense gratitude for your prayers and faith in what you believe.  We're very blessed with more than we deserve.  Thank you!


I know I have unfinished information on my posts regarding tests/results/medications, I feel satisfied to have something recorded.  I just hope someday It will somehow make enough sense for the girls to understand.

Natalie was happy to be home with her favorite buddies.

Natalie could not keep her lips off Evie.

It's always a good time when we are all together again...Tyler was the tackle target this usual.  After a while he had to free himself before things got out of hand.
This is how Alice gets around these days.
Jessie came to visit Natalie and play games with her.


  1. I'm glad that Natalie is home. From one mom to another, I send hugs...

  2. I was blessed today to catch up on your blog! Your family amazes me. We met yesterday outside the elevators. When I showed my Carson pictures today of Alice and Natalie he smiled and said "ahhh" he remembered them from yesterday. We will continue to pray for your little girls and your family!

    love the Hancocks