6 January, 2015 mcfadyena

Russian Roulette

Hi Everyone,

I’m sitting here, once again, in the OR waiting room at Sick Kids Hospital in Toronto.  I can’t recall how many times I’ve sat in this room, waiting for news on my son.  But I do remember how awful it is in here – I’ve often called this place the worst place on earth – it always feels stuffy, the atmosphere grim, the energy of each and every one of us in here drained completely.  And the stress.  The stress permeates the room from the moment you enter.  It heightens in everyone as soon as a doctor appears in the door – each of us wondering if it’s news for us, and if that news will be good.  The stress breaks once parents get word that their children are now ready to be seen, but only for a short while.

They’ve tried to change this room over the years.  It’s received a fresh coat of paint – it seems lighter in here, and there is a Christmas tree in the corner to make people feel at home and cheery.  There is a TV on the wall that updates all the patients and the stage they are at…In Holding, in the OR, or Finished.  But it’s the same place – and I’m sitting in the same seat that I always do while I’m here.  It’s not the room that makes this place feel awful, it’s the mood.  And that will never change.

We’re here together – Ellen, Gabriel, and I, and dealing with things together like we always do.  But we almost didn’t have Gabriel with us.  For some reason, we thought the stress, the long day – the unknown –  would be too much for him and we arranged for him to stay with Nanny while Ellen, Isaac, and I came on our own.  But it was also stressful to think about him being left alone and worrying about his brother, and wondering what was going on while we were away.  He woke up yesterday and told us he wanted to be there with us. He’s Isaac’s best friend – his support system, and we need to be here together.  I’m so glad he came, and watching the boys spend time together before the surgery was one of the loveliest things I’ve ever seen.

This is the place that parents of kids with MPS dread the most.  Surgeries are tough on kids, but made all the more difficult for our kids with MPS because of their comprised airway – airways that continue to deteriorate with each passing year.  Sitting here, I can’t help likening these frequent visits to Russian Roulette, a thought that’s been nagging at me for weeks now, ever since we got word that Isaac’s transplant was set for today.  It’s a grim thought – one that I don’t want to have and one that scares me.  How long until the chamber isn’t empty?  I don’t want to know.

We’re lucky, however.  More lucky than most parents in our position.  Isaac’s airway has been slowly rebuilding itself since we started him on Elmiron, the JnJ drug that we worked so hard for him to receive.  We know it’s doing wonders – his hands are straightening out, his spine is doing better, his joints are less stiff.  And his airway – it looks almost like a “normal” 10 year old airway now, something we could never have expected a few short years ago.

But that old familiar feeling of dread comes back to us all once we enter this room, once we sit and watch the door for our doctor to arrive.  I wondered aloud yesterday if this weakness of mine makes me less qualified to do the work I’m doing now on behalf of our kids throughout this country, whether this vulnerability or fear (or whatever you call it) makes me less able to support other families as they go through similar battles.  The answer came quickly, from a wonderful Mom who I’ve been lucky to get to know over the past few months.  Via text, she said:

“This makes you a great patient support person because you are honest enough to share your true emotions and know what a roller coaster ride it is. You are super human ; ) but you are human too.”

Those few sentences made me feel so much better about being afraid, and it’s comforted me as I sit and type away on our blog.  I should have told her that before making her read it here 😉  And she’s right…I am human.  And it’s OK to be afraid.

So far, it’s been an hour and a half since Isaac went back.  We have full trust in the man that’s looking after him right now – Dr. Cengiz Karsli, Isaac’s longtime Anesthesiologist (pictured below with Isaac this morning.)  We’re lucky to have him each time we go through this process, and it makes us feel a bit better knowing we’ve got the best person to care for our son.  We’re hopeful that we’ll win this round again, and the stress levels can come down a bit as we help our son heal.

I’ll update more on Isaac’s status as soon as I know more.  Thanks, as always, for your support.  It means the world to Ellen, Gabriel, Isaac, and I.

With Love,



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