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, March 31, 2014

Finished Treatments

This past Friday Alice finished the last of her 9 treatments.  Currently her Adenovirus level is not quantified, which is wonderful news and also means that she is below the level requiring further treatments.  Her counts on Friday were also good.

ANC- 3400
Hemoglobin- 11.2
Platelets- 129

We were worried she would need blood because she seemed to have little energy and was complaining of a headache.  Luckily she didn't, and most likely she is tired from her lack of nutrition.  We will discuss her nutrition in clinic on Wednesday.  TPN is not an option, yet her tummy struggles to keep foods down, it will be a tricky thing for her to overcome...the doctors want Alice to have another feeding tube.  We aren't sure how well that will turn out, but maybe it can help bridge the gap.  She has made improvements, just little by little.

Last Cidofovir treatment

A few nights ago I was feeling very discouraged and sad regarding Alice.  It was a hard night for me, each time Alice vomited I became more and more emotional.  It was hard for me to watch her struggle so much...and feeling so helpless.  I suppose I realized at that moment that I am not as strong as I thought. Tyler and I have had to be so tough for our girls...we are strong so they can feel secure and lean on us. Being strong isn't always easy, and this particular night I wasn't holding back my real emotions as I have had to do so many times in the past in front of my children.  Not sure why of all the days, this day was more difficult; nothing out of the ordinary occurred, maybe it's been building up. Anyway, Alice looked at me and with a very concerned voice asked what was wrong with me.  I told her that I was sad that her tummy wasn't better.  She said, "Mom, don't be sad for me, I am not sad for myself."

I couldn't believe what I heard, she said exactly what I needed to hear.  I had been in tears earlier asking Tyler what kind of mother couldn't make her children better, just venting in frustration.  Alice understood it all, and helped me understand too.

Alice's last words to me that night before she feel asleep beside my bed were, "Mom, I will never give up!"


My most willing kitchen helpers.
Don't let these pictures fool you.  These two girls can be the best of friends, but more often than not they are driving each other crazy.  Evie is the world's biggest tease and just wants Alice's attention...she knows how to get it.
Of all the patience Alice possesses, she saves little for Evie.


  1. Lisy no one can be strong forever. I cannot imagine the heartache you and Tyler feel each day just wanting this family of yours to be out of pain. I pray that day comes soon for you all. We love your sweet family and you are strong. Even when you break down you get back up. Your family is the definition of resilience.

  2. Oh that sweet little Girl! This story brought tears to my eyes, I hope and pray this will all be better soon for you guys!

  3. Alice is so wise...she has been given such wisdom and strength to bear the burdens that she is carrying. She couldn't be more blessed to have such wonderful loving parents who have dedicated their lives to giving her the best possible chance at living a full and happy life. The Lord knew you needed each other!! Thanks for sharing such a beautiful and touching story. We pray that her tummy troubles will come to an end SOON!! Love you!

  4. This definitely brought me to tears. What a sweet little girl. You are an amazing mom with an amazing family. I look forward to reading your posts and love hearing when sweet Alice is doing better. You are often in my thoughts and always in our prayers.

  5. Happy puddles :)... Out of the mouth of babes!!! Still praying for her recovery and everyone's strength. Loves!!!!

  6. WOW amazing!! Gave me chills...Alice is WISE beyond her years......

  7. My sincere thanks for sharing your heart with us. I always seem to read your blog on the day I most need the Fish family to teach me a life lesson. You are all magnificent and I am awed by your faith and courage!