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.

Wednesday, February 20, 2013

Fever, Back to The Hospital for Alice/Surgery--Clinic for Natalie

I can't lie, there are days I just don't feel like posting.  Today is surely one of those times, although, I am motivated to do so, because perhaps these times are the most important to record.  
Today has been wonderful and challenging all at once.    

Our favorite roller coaster that we ride seems to have picked up a little momentum...we woke early this morning to sweet Alice lying next to our bed whimpering.  I climbed out of bed wishing it wasn't morning already to discover that she had a temperature of 103+.  She wasn't well and we knew it.  Alice had re-developed an abscess (diaper area) and was in much pain.   Several months ago the surgeon lanced the abscess at her bedside, however, this time we (doctors and us) felt it better to fully sedated her to ensure a thorough cleaning and placement of a drain tube.  Alice was so strong last time, but she is emotionally spent and we didn't want her to feel nor remember any of this. 

The surgery went well and she is recovering fine.  Possibly she will remain in the hospital for a few days to ensure the abscess area is healing.

As For Natalie:

Natalie had her last clinic visit with the bone marrow service until the summer of 2014!  This is a huge milestone for her and for all of us.  She had one final lab draw.  Her counts are amazing and she is doing wonderfully.  

Quick count summary:  ANC 4000, T-cells, B-cells, K-cells are normal.  Chirmerism is 100% B cells, and 97% T cells.  Whole blood chimerism is 97%.  Hemoglobin is 13.0, platelets are 93, all IgG/IgA,/IgM levels are normal. All kidney and liver functions are normal.  Hydration levels are great.  Her white cells under laboratory testing are responding to several different types of bacteria.  The response is there and will continue to improve over time.  What this means is that her immune system is responding/working properly when introduced to different bugs.  

Natalie will continue to be followed regularly by pulmonology and neurology.

Its's amazing to think that she is on the road to a NORMAL healthy life.  
A handful of times throughout the day I found myself holding back tears of gratitude for all that Natalie has accomplished.  I continued to look at her and then at Blair who gave his marrow to her and found myself overwhelmingly grateful.  

Natalie shared something with me a couple weeks ago, I wish to record.  She came to me one day and asked me how long it takes for a wish to come true.  I told her it depended on the wish.  She said it had been two minutes and still it had not come true.  She then proceeded to inform me of her un-granted wish.  She explained that she wished for an imaginary friend that only she could see, someone who would play with her.  I nearly cried when I heard this.  I told Tyler; immediately we felt it was time for her to be with peers, regularly.  We spend time with Natalie during the day and fulfill many of  her requests, however, we are not her peers and cannot replace that.  Her un-granted wish partly influenced our decision to put her into school straight away.  Ironically the day after she started school the doctors gave us the green light for her to return to school.  Natalie has a wonderful teacher and incredible classmates who constantly adore her.
Natalie has blossomed so much in the last two weeks since she started school.  She was invited to a friends birthday party...20 darling little girls all having a pajama movie party.  She had so much fun, when I picked her up she talked the whole way home telling me every detail and smiling all the while.  We could not have been more happy, a sweet moment for Tyler and I to witness, I felt like my heart was smiling with her as if I was the giddy little girl at the party.


Tyler and I are confused as to which is easier....having someone in the hospital or having everyone home.  We have become used to the hospital life so much that we have developed some sort of rhythm in this lifestyle.  When we are all home and in one place we hardly know how to function under normal circumstances, relatively speaking ;).  Nothing is better than being together in whole, however, our challenge is apparent in silly ways such as simple tasks of homework, organizing productivity, keeping a schedule and even remembering what the schedule is.  We continue to feel like there is plenty to accomplish and much we wish to implement, yet we turn in circles and become dizzy.  Now, if we were dealing with a life threatening situation, suddenly our purpose becomes clear and we find our grove.  Have we truly been in survival mode so long it has become standard?  

Blair had an emotional meltdown as I was leaving the house with Natalie.  He was afraid I wasn't coming back for a while.  He just needs his Mom more.  All the children do.  Being a sibling in such a situation is a hard job.  I gave him extra hugs and kisses and promised him I would come home by the afternoon.  I even promised him I would play Mario Brothers with him and find all the mushroom houses, a subtle smile slipped out of him with such a promise...and when I came home I played all the Mario Brother's I could handle.  He kissed me and hugged me no less than 20 times during our playing.

Matthew has been so strong to motivate each of us to stay on task and keep our chins up.  He is the first to wake and helps Blair dress and do his homework as well as doing his own.  He is a good boy.  When Tyler is away he seems to fill the empty spot in my bed.  Matthew capitalizes on opportunities to sleep in Mom and Dad's bed.  He often has bad dreams...why is it that when you are in your parents bed--there are no bad dreams...I was the same way when I was little.  It just felt safe!

Gary, Grandpa, Tyler's Dad has come to our rescue many times...we are so thankful for him.  This journey would have an entirely different scenery without him.  All of our family members included have been amazingly helpful.  Many Thanks!!


Nurse Nicole saved the day and played UNO with Natalie while I spoke with the doctors. Natalie 's biggest complaint about clinic is being so bored when I talk 'doctor stuff'.  We love our nurses!

Last Clinic Visit!  I will say it was very anti climatic...Natalie didn't really understand what it meant ...I was a bit distracted with Alice being just moments away from surgery and such.  I almost wanted her and I to savor the moment a bit more.  The doctors seemed more excited than us.  Also I suppose there are mixed feelings on my part.  I occasionally find myself needing to trust that we have truly arrived at this point with Natalie.  I assume that it is normal to feel a bit nervous letting go of the leash with bone she ready? Would if this? Would if that?  Yes, it will be alright! :)

So exhausted!


  1. This is the greatest news to hear about Natalie! How exciting for her and your family. You all deserve this so much!

  2. so many changes! GOOD changes of course! Matt and I felt the same confusion...of course you are so happy to get to a "normal" life, but WHAT is normal? We realized the next trial in our lives would be the absence of a trial! It has been a wonderful trial to have :) it's amazing how quickly you fall into normal...still worrying but more relaxed and able to move forward with things that have been on the back burner for so many years. You guys are amazing parents!! ALL of your kids are doing so well and the lessons Blair and Matthew have learned will turn them into amazing young men! There is a growth that only comes from situations like these. I will forever be grateful for this time. Alice WILL get there too...she just likes the hospital a little more than Natalie! You are so kind to let her go back for another stay ;)...Congratulations and we pray for a speedy recovery with Alice! WE LOVE YOU GUYS!

  3. I do not know your family, but stumbled across your blog, have read almost every entry, and now do feel like I know you guys. Your story is so full of love, hope and so much positivity. Your whole family, especially Alice and Natalie, are amazing. I pray for you all constantly. God Bless.

  4. I'm so happy to read Natalie's news. It must be strange to be able to not think about her bone marrow for another year! I'm sending good thoughts to Alice and hoping that she is home and feeling better soon.

  5. Praise God for Natalie's great news!!! Praying Alice is on the mend quickly.