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.

Sunday, January 5, 2014

Day +79


CMV--Alice's CMV level has improved.  The best good news.  Currently her level is 3.4  It has been as high as 4.4, fluctuating up and down many times in-between.  In order to cut back on some of the toxic medications that are helping her CMV level come down she needs to be nearly 10 points lower.  She is getting there!

Shingles--Wow, these darn things have given her much trouble.  I believe in the past two days we haven't noticed new spots appear.  I hope this trend will stay.  Thankfully the majority of her shingles are crusting over, with the down side of them itching uncontrollably as they heal.  Calamine lotion has become a good partner.

Stomach--Nausea is no stranger to Alice, it hasn't improved in my opinion.  She vomits at least every hour-two hours it seems, sometimes she has long stretches of relief.  Still no desire to eat or drink.  Her feeds into the NJ tube are helping her gut move, but also causing more nausea.  She is receiving 30 ml per hour.  In order to be off TPN, she would need almost twice that much.  It will happen, it might take longer than we hoped but surely it will happen.  When she is home and moving around more, her gut might heal quicker.

Cabin Fever--Tyler and I have been pretty good all these years to avoid terrible cabin fever, but this stay has been extra hard.  I wish I could open the window in Alice's hospital room, so she can feel the outside air and breath it in.  I'm fortunate enough to walk outside when I need to, but still I'm feeling the fever.  This is a sign that we have been here TOO long.  I don't know how Alice can do it, without ever complaining or talking about leaving the room and going home.  I know when she is feeling better and has more energy that desire will come.  Maybe Alice will come home in 1 week, maybe 3 weeks...who knows.  I suppose if we had a target date it might be easier, however, we know better than to ask. ;)

Holidays--Even being in the hospital over Christmas, we had a great time.  Words cannot express the gratitude we feel for those who made our Christmas so special during such a challenging time for us.  Also we managed to feel together even though we were apart.  Many people here would say--I am so sorry you are in the hospital again for Christmas.  It is true that being home is the best, but I would reply....we have many more Christmases to come, this one will be especially remembered.  My only regret this year was the fact that I managed to only read half of the Christmas story from the bible to my children before I fell too tired and couldn't finish.  I intended to finish the next day, I didn't, but I know they know the rest of the story.

Strength vs. Weaknesses--One night while I was on home duty, Matthew crawled into my bed hoping I would invite him to stay for the night.  I was just about to shew him along to his own bed, but decided to take advantage of what I recognized as a teaching moment.  I asked him a simple question.  What do you think a weakness is?  He replied saying things such as, crying, getting hurt, etc. I then asked, what do you think a strength is?  He replied by saying things like, lifting heavy weights or big muscles.  I nudged him a little by asking him what he is good at doing.  In his confidence he had a lengthy list, including football, basketball, math, making friends, being a good brother, etc.  I could see that he was beginning to understand and as the conversation unfolded he turned to me and said, "Mom, I know what your strength's the way you love Dad."  I wasn't expecting such a reply.  My heart felt so happy.  I will happily claim that one.


Evie trying out the mini skateboard at Play it Again Sports.  Tyler was in the market for ice skates and hockey pucks...more on this story to come.

Blair is holding a real authentic certificate from Buzz Blair you are a well recognized hero.  Does he look Proud?

Evie was taking apart Christmas as fast as I was gathering it to put away.  She wouldn't leave the costume alone until I got a picture.   You are the cutest wise man Evie!

A New Year's Eve celebration.  This day was by far Alice's best day yet.  She was so happy, polite, kind, talkative, and smiley.  She was showing more of her old self and it was wonderful.  Of course you can see that she was feeling well enough to do some make-up....turns out, she looks more like a New Years's clown, than a Mary Kay facial lady.

The family came to watch Alice open her Christmas gifts.  The hospital served a nice Christmas dinner to all.  Good times!  The kids thought it was awesome.  I loved it, I didn't have to cook it, clean it, or pay for it.  

Working on our alphabets..she loves

Calamine lotion...the pink beard.  


  1. Words can't express my love and admiration for all of you! We pray for you daily and know that your faith will carry you through these times…wow, someday you really will look on this as your past life and it will feel surreal! But for now, keep taking things one moment at a time and know that you are NEVER alone ;)

  2. You continue to strengthen my life through your strength. Your family is very special. My 7 year old daughter is fascinated my your girls and their strength and loves to watch their videos. THANK YOU for being such a strength to our family. We pray for your family and especially little Alice

  3. You have such a strong, beautiful family and you're all, especially beautiful Alice, in my thoughts and prayers every day. I hope the best for you and I admire your faith like you wouldn't believe. Thanks for keeping us updated :)