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.  :)


Wednesday, April 16, 2014

Highlights from Alice's Ribavirin treatment

These are some highlights from this last week's stay. It was a long week and I will admit I was a little off some of the time as you will see. I've since gathered myself and am glad we have Alice back home. Tyler

Monday, April 14, 2014

Ribavirin Treatments


April 9th
The VRP (Viral Respiratory Panel-done by a nasal swab) that was done in clinic today indicated that Alice has three different viruses on board.  They are:
-RSV (Respiratory Syncytial Virus)
- Adenovirus

Treatments for RSV require 2 hour fine mist inhalations of Ribavirin for 15 sessions, during a 5 day period...all done in an ICS isolation room.  With each treatment Alice is pre-treated with albuterol to prevent lung spasms.

ANC 4400
Hemoglobin 8.8
Platelets 124

April 10th
Hard day for Alice...getting used to the long treatments wasn't fun.  Start to finish, it takes about 3 hours.  She is in isolation during the treatment under a plastic tent.  

Alice received IVIG today, we hope this helps greatly with warding off the viruses.
Alice also received blood today.  It was a busy and hard day for all of us.

ANC 2800
Hemoglobin 7.7
Platelets 100

April 13th
Happy Birthday Blair!

Thanks Aunt Amberly for staying with Alice so Tyler could come home and be with Blair on his birthday.  Blair is 7!  He had a fun birthday.  Clam Chowder for dinner and more fun with cousins,  piƱata and cake.

April 14th
Alice receives her last two treatments for RSV today.  In between treatments she will get her monthly dose of Pentamidine-antibiotic, through infusion.  Once all this is finished she will come home and we can't wait to have her back.  I have not seen her since Thursday and I miss her terribly.  I will say I have had a chance to read and do a few things I don't normally get to do when she is around.  Tyler was on hospital duty the majority of this stay and thankfully was given a little break from Amberly.

ANC 3300
Hemoglobin 11.2
Platelets 98


Just settling in to ICS for another week.

Getting ready for the treatment.

Ribavirin requires this tent over the patient while the treatment is helps keep the small mist particles contained.

This is what the nurses have to wear when in the room during the treatment.

Emily picked out this flower hat for Alice....appropriate for Spring.

It fits Tyler too.

What a sport!

Sleeping during the treatment...the best way to cope.

Princess game with Amberly.

Birthday boy.

Blair's favorite dinner...Clam Chowder.

Another awesome cake... hmmm.

Wednesday, April 9, 2014

Doing good....whoa, wait a minute

 A quick post. Alice did well today at clinic, even after the nasal swab. Her counts were doing well. ANC at 7.5, music to our ears. This week we will take her completely off of her bone marrow medicine and see if she can maintain on her own. I could tell the doctors were excited too. Alice was complaining of an ear ache so we had them check to see if there was any infection. They were a little red so they prescribed an anti-biotic and we were out the door. Awesome clinic day.....

Lisy called 5 minutes ago. The hospital called about the nasal swab results. Alice has RSV and couple other cold viruses detected. She needs to be treated and that means back to the hospital for five days. They are preparing a room right now.

Could all of you excuse me for a moment while I remove my big boy pants and say, "But, I don't want to go BACK to the hospital."  Good grief!  When we check Alice in we'll be able to post more information.


Wednesday, April 2, 2014

Climbing Counts

Alice had a good day in clinic, it was a fast visit.  We will continue to give her another week without tube feeds because she has made some bits of progress in the past couple days...less vomiting and more eating.  She really only wants to eat a few items, but if she will eat them, we are happy.

Counts were good and we have decided to cut the Neupogen back to once a week, also cut her nightly fluids in half.  This will give her more urge to drink and possibly eat more.


Next week we hope for more good news.