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, April 21, 2014


I have been so excited to post all week, finally have a minute to do so.  Truly Alice has reached a big milestone... for a few reasons.

April 18th, Alice was officially weened off her anti rejection medication Cyclosporin.  Can't believe it's been seven months since her last transplant and thankfully we were able to taper Cyclosporin all the while she was recovering from many illnesses these past several months.  We do hope and pray that her little body will be content with the new marrow and accept it as her own.  In the coming months we will find out if she will accept or reject the graft as she is no longer on the anti rejection medicine.

Over the past two weeks we have seen major improvements with Alice's nausea.  Her little tummy has turned the corner we think.  We can't smile, laugh and cry enough to show the emotion we are feeling. We are so relieved and happy that she is eating almost like normal, keeping food down, having close to normal stools...and complains very little about her tummy hurting.  Usually when she complains, it's because she is hungry.
We are not letting her have dairy yet, her tummy is not ready for it.  We have also limited her wheat intake. Hopefully her tummy will recover fully and someday she will be able to have those things.  But for now we are thrilled with the progress and have nothing to complain about.

Her counts have been holding steady without assistance.  Today April 21st, she had a fast visit in clinic and everything looked good.  In fact she does not need to return for two weeks.  WHAT?  Exciting! We understand that the Spring has still some viruses to present, we hope not to get them, but are aware that the next few months there are still hurdles to avoid and overcome.
ANC 2000
Hemoglobin 11.4
Platelets 96

Natalie's Update
Natalie has had a cough and draining ears for a week...with subtle fevers.  She has been to the doctor a couple times.  April 19th she had a clinic visit with pulmonology, her lungs sound good.  Her PFT (pulmonary function test) numbers were lower than last time, likely due to her current cough/congestion.  April 20th she had a clinic visit with immunology.  The doctor took a culture of the fluid/mucus in her ear.  Likely it's a viral process, but in the event that it is also bacterial, we can start some antibiotic ear drops.  Natalie definitely has less energy this week and last, missed a lot of school, but is putting up a good fight.  Her body needs to try on it's own to heal as long as possible before we intervene.   Her new immune system is getting stronger, it's a long process.

I am excited that I can implement some essential oils more in our home now, with Alice being off her anti-rejection medication we have more flexibility with oils etc.

As far as the rest of us, we are doing well enough.  I have had a cough for sometime and hope it leaves soon.  Matthew started a baseball league, he and Tyler are having a great time with that.  Blair hopes to join a chess club soon.  He is becoming a great chess player.  Evie is still wild, crazy and fun.  I am thinking it's time again for the Sleepy Fairy to visit our house.  Bedtime with Evie is horribly obnoxious to say the least.  She and Alice have seemed to get along a bit better lately...phew!

I know there were more things I wanted to talk about, but can't remember them.  Lately when I sit down to post everything in my memory escapes.  For now, we will bask in the moment of good news and stretch it out as long as we can.  We've got to catch it when it comes.  :)



  1. Such great news!! I am thrilled for you guys. Go Alice go!

  2. Sooo wonderful!! Very happy for your family!

  3. I'm so glad Alice is doing well! I love you guys!

  4. Her counts are like a normal persons!! (I know she is a normal person... but you know what i mean!) Thats so exciting!! Love you guys :)

  5. Yipee!!! So happy that good days are headed your way...miracles really do happen, just in the Lords time!!! LOVE YOU! I hope your feeling well too ;)

  6. So grateful the girls are doing better. Hope your family can enjoy some calm. Think of and pray for you guys often!!

  7. Such great news! I'm so happy for you! I have been following your blog since Dec 2012 when KSL did a news clip about your family. I have been amazed my your faith and strength and the deep love and support you give each other. I can't begin to imagine what a day in your life is like, the constant stress and worry. This past January, my son was at Primary Childrens for 3 days on IV antibiotics for an infection, and being there I kept thinking about YOU and so many families like yours who spend so much time at Primary Childrens, you're an inspiration to more people then you know. Thank you for sharing with us. We will continue to pray your girls and all of you!

  8. That news is wonderful! And I tell ya what, that sleepy fairy who Alice sent to our home when she was done with her for awhile, did wonders for our almost 5 yr old! She's all ready to send her to Evie!