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.

Saturday, February 23, 2013

Biopsy Results/Ear Surgery

Yesterday Natalie had surgery on her right ear drum.  The surgery is called Myringo Plasty with Fat Graft.  She was willing to proceed knowing that she would be asleep and not feel anything.  The surgery went well and she seems to be recovering nicely.  It will take about six weeks for her ear to the meantime it needs to stay completely dry.  The procedure entailed grafting a small portion of skin from behind her ear and with that skin patching the small hole that remains from having a tube.

She is looking forward to possibly hearing better and in the near future being able to swim without worrying about getting water in her ears.

I was overly nervous for this simple procedure, due to being under more stress lately...I was relieved that it went so well.

I have been meaning to post Alice's bone marrow biopsy results for sometime now, however, I needed to take a little time to sort it all out and accept it before I felt like I wanted to talk about it...thus the added stress lately.

When the doctors delivered the news to Tyler and I we were devastated, I was at home on speaker phone, while Tyler was with Alice in her room conversing with the doctors.  I kept wanting to say 'what?' like maybe I heard them wrong...but as terrible as the connection was it was in fact true and hard news to hear.

Alice's bone marrow has less than 10% cellular density and no longer is producing any cell lines to sustain her.  She is entirely dependent on transfusions of red cells, platelets and antibodies.  Her white infection fighting cells are almost non-existent.  Unfortunately infection fighting cells can not be donated.

Alice is hanging on to her graft by a thread.  There is a small chance that somehow it can revive itself, this is our hope....of course we are going to hang on to any glimmer of hope and continue to seek answers to improve her situation.

Currently the plan is to adjust (let up a little) her anti suppressant medications enough to provide all opportunities for her marrow to thrive without provoking added graft vs. host disease.  The entire process is incredibly delicate and has been from the beginning.  We understand and know that Alice's life in its entirety has been a miracle.

The past couple days have been overly challenging for Tyler and I as we have each experienced moments of emotional weakness and exhaustion.  We are struggling to find something solid to grasp as we look for options and solutions.  The doctors are going forward with the matching process once again in the event that Alice needs transplant again.  The risks of a second transplant at this time are much greater than before.  She is very fragile, the doctors have expressed great concern in Alice's behalf.

Initially when this unfavorable news came to us I felt so discouraged and upset, I struggled to focus my thoughts, I cleaned the entire house, sorted through toys, organized clothes, etc.  I had to do something to pass the time as I was fighting the anxiety associated with this situation.

Recently, I was feeling overwhelmed and extra emotional, I went down to the cafeteria once Alice fell asleep.  I was past hungry but needed the nutrition.  I was just sitting to eat when I saw an employee hospital friend passing by on break...whom I have not seen in several months.  It was a sweet tender mercy for me as this inspired person said all the right things I needed to hear at that moment.  I cried more than I ate...:)  But of course felt much better afterward.  A good cry can be so therapeutic.

The peace that comes as we remember the Lord's hand in our life continues to remind us that He is indeed in charge and will take great care of His sweet Alice.


So Cute...the bottle is her comfort.

Our most favorite game...passing time as we fast.  Love this girl!


  1. You don't know me. I've commented maybe once before and I've read all of your posts for maybe a year. I'm so sorry to hear about Alice's troubles. I have learned through my trials that the benefit of sharing with others is that more prayers are said on your behalf. I'm certain that this is also the case for you. Thank you for sharing. We are praying for your family.

  2. Oh I am so sorry to hear of this news....I read your blog daily and I have fallen in love with your family and your precious girls. I was dx with leukemia as an adult, I know a little about what you are going through. I pray that Heavenly Father will comfort you and that ALice and Natalie will continue to be blessed and continue to heal! Espically Alice, she is darling and those curls are so cute!!


  3. My heart is so heavy as I read this. We are praying for you every day. Heavenly Father has a plan...we just need to do our best then let him do the rest. GOD BLESS YOU ALL!!!!

  4. Can Alice have visitors? I would love to come spend some time with you both and visit with you sometime. Do you still have my email? My cell is 801-787-7381

  5. Oh my heart goes out to you and Tyler. There are some days when you need to break down. I'm sorry for this set back but I am praying for Alice's body to respond. The Reese family adores and admires you all!

  6. I hope that Natalie's ear surgery allows her to enjoy all of the sounds of life.

    It hurts my heart to read of Alice's struggles. She seems to handle all that's been handed her with such grace. Your family is in my prayers.

  7. Lisy-
    My heart aches as I read your post. Alice is such an example to all who meet her. We will pray for strength for you and Tyler and know that you will be guided and directed as you work through this challenge. We send our love to all of you!

  8. Our Lord. Please cover this family with your peace. Lord God be with Alice; hold her in Your hands. Guide these Drs in the best method to heal this sweet child.
    This family needs you Lord; let them feel Your presence. Thank you for Your continuous mercy.
    My heart hurts for your dear family. Praying for you all.

  9. You don't know me but we have mutual friends which is how I found out about you! I live in WA state but all our family is in Utah . What is the criteria for a donor ? If we meet it my family would like to try to be a match ? Email is