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.

Wednesday, January 30, 2013

Alice Needs Blood

Last night after the children were all sleeping, Tyler and I laid in bed talking.  He eventually fell asleep and I continued to let my mind wander.  Two hours must have past before I fell asleep too.  I thought of all the millions of things I am thankful for, each of my children, each of their strengths and weaknesses, the funny things they say and do, the hugs and kisses they share, I thought of the first time I knew I was in love with Tyler and all the amazing things we have experienced together.  I even imagined a life without any peaceful it was, yet I know that the peace and perfections we can only sometimes imagine, truly cannot be understood without challenges.  We are surrounded by glimpses of peace and perfection, learning to cherish them and appreciate them is a blessing and comfort.

When morning came, Tyler and I found ourselves amazed that not one child woke during the night.  It almost seemed unreal.  We won't complain if it happens again :)

Alice had clinic today and because the weather was so snowy and the roads slippery, Tyler decided he would be taking her today.  I was wishing to be there, however, it was better for me to stay home and do things I couldn't have accomplished had I gone to clinic.  Natalie, Evie, and I had a good day.  We turned on some fun music and cleaned.

Tyler called from the clinic to tell me that Alice would be needing more blood today; she has a warm antibody now, which makes the matching process a little harder. The doctors will place her back on more steroids and some other medications.  Her ANC was back to zero, her Hemoglobin was down again to 7.  Her magnesium levels are high, therefore, she will take a brake from magnesium. Tyler also mentioned that the doctors are not sure what to do specifically with regards to Alice.  They seem a bit directionless/perplexed...they spoke of the possibility of doing transplant all over again, Tyler and I continue to feel like her transplant will make it...of course we hope for this.

I was reminded of this quote today that I recently read.

"...falling down is a part of life, getting back up is living."   --(not sure who it is from).


"What lies behind us and what lies before us are tiny matters compared to what lies within us."
       --Ralph Waldo Emerson

Little reminders to look upward and press forward.



  1. I love how honest you are....this blog will be a tremendous blessing for those sweet girls to read years from now!!

    You are constantly in our prayers.

  2. Oh Lisy, you guys continue to amaze me. I hope Natalie is feeling better and has a speedy recovery from her shingles. Not a day goes by that I don't think about you guys. I sure hope the Dr's can figure Alice out and that she doesn't have to redo the transplant. You are all in my thoughts and prayers. If you ever need anything, don't hesitate to call!

  3. I just have a suggestion regarding Alice's hemoglobin, and I have no idea if it will work. Have you tried bio available b vitamins like methylcobalamin (b12), Pyridoxal 5 phosphate (b6) and L-methylfolate (folic acid)? I have a gene mutation that affects my absorbtion of b vitamins, and I was ALWAYS anemic since I was little. Once I started taking these b vitamins, that my body could use, my hemoglobin went up to normal without any iron supplementation. I know your girls are very complex and it may not do anything, but maybe it will?

  4. Your names were put in the Temple...again :) You will find the may or not be another transplant. It took 6 years for us to do another one but when it was time we all knew in our hearts it was the right thing to do. You are in our prayers!