The End of the Beginning…

Well, this is it. Our last treatment.

After 12 years of weekly infusions, today is the last one. It comes with mixed emotions, Hope, Fear, Worry, Anxiety, and Anticipation to name a few. And Gratitude. Heartfelt gratitude.

When Isaac was diagnosed, we didn’t know what the future would hold. We didn’t know if he’d have a future, let alone how far down the road he’d go. When this treatment was approved, we had to fight to bring it to Canada for Isaac, and then fight to keep it here for him. Along the way, we were lucky to help pave the way for other children in need, and I’m grateful for every experience we’ve had from day 1 until today.

I’m grateful for the children and families we’ve met along the way, and those we’ve been fortunate to help and become part of their lives.

I’m grateful for the support we’ve received, for the people who’ve followed our journey, for those who’ve helped us fund our research to find a cure.

 

I’m grateful for the few of you who where there on the front lines to help pick us up when we were at our lowest, most heartbreaking of moments, standing beside us as our son
fought so bravely for his life.

And I’m grateful for those of you who are still here, those close friends who know our lives have been difficult, and that we have to disappear from time to time to cope and reconnect. I’m grateful to those of you who get that, who are there when we reappear, even if just to bring us in for a quick glass of wine before we have to disappear for a time again.

Isaac and his hero, John Mayer.

We’re close, everyone. Thank you to you all for helping us raise these funds to get this research to where it is today – finally getting into kids in need, and hopefully providing them with the cure we’ve been searching for. Special thanks to you, Danny Michel, for helping us raise those funds by sharing your beautiful music with us, and for always saying “Yes” when we were in need.

And to you, John Mayer, for simply being a kind, caring, empathetic and compassionate friend to our son, our family, through this all.

This is the end of the beginning of this story of Hope, and we start the next chapter in 2 weeks time.

Together. Like always.
#HopeIsHere
❤️

Pictured: Isaac’s first treatment, and his last.  Isaac with Danny Michel and Isaac with John Mayer.

It's Never Easy Saying Goodbye – Lucas Braun, 1997-2017

Every second we get to share with those we love in this beautiful world are important.  Every memory made, every laugh, every tear.  Every hand held, every hug given and received.  They all matter.  In his short 20 years in this world, Lucas knew just that, and he made each and every moment special – for him and for others.

IMG_8493It’s never easy saying goodbye to those of us we hold so dear, but saying goodbye to someone like Lucas Braun seems that much harder, that much more heartbreaking.  Sadly, Lucas passed away last night.

I was one of the lucky ones to know Luke and to love him.  I was one of the lucky ones who got to learn from him and be guided by his bravery.  I was one of the lucky ones who will forever be changed – for the better – by having him in my life.  And, like many, I’ll forever be a bit broken with him being gone.

Luke battled MPS with bravery and strength.  He battled stoically.   He battled hard.  He handled every one of those battles with grace and determination, every setback as a new challenge, every painful situation as a necessary road to travel on the way to greater strength.  He was in and out of hospital for more surgeries than anyone should have to endure, though always smiling, always brave.

Lucas battled MPS and it was a part of him.   But he didn’t let it define him.  In my minds eye today, tomorrow, in twenty or thirty years down the road, it won’t be the disease I think about when I remember Luke, it will forever be his grace and dignity, his strength and bravery that comes to mind.

Luke was one of the bravest kids – the bravest people – I’ve ever met.  Patient #1 for the Canadian Clinical Trial of Vimizim – the life-saving investigational drug that was being developed for patients battling MPS IV (Morquio Syndrome) – Luke faced the unknown head-on.  He bravely put himself in harms way to help test a treatment that had the potential to save many lives, to help slow the progression of the disease in patients, to give them a life-boat until a cure could be found.  He bravely faced the unknown to give others a chance; he faced it to provide Hope.

17202897_1275005402583731_7948283153381030130_nThere was a celebration when Vimizim was approved here in this country, but Luke still had his concerns.  The drug was approved, in large part due to his sacrifice and his bravery, but it still wouldn’t be available for patients across the country who needed it.  When Lucas found out I would be on a crusade to ensure the drug’s availability for those most in need, he told me I needed to be successful because he did the trial to help others, not to watch governments say no to access for everyone.  As I fought my battle with governments to gain that access for others, he selflessly told me that “If other patients can’t have the drug, I don’t want it either because I didn’t do this to be selfish, I did it to help everyone.”

Luke was like that – he always thought of others first.

He would often tell me he admired the work I was fortunate to do, and that made me proud.  It made me proud because it was he who was the hero, it was he who helped develop this treatment, and it was he who gave hope to all the other patients in the world who were fighting this disease.  I fought for all the other kids because of him, and the bravery and sacrifice that he showed, and I fought so that sacrifice wasn’t wasted.

And it wasn’t wasted.  Because of Luke, so many kids across the country have Hope.  Because of Luke, their lives have been saved.  Because of Luke, they can look toward tomorrow.

It will always be Luke’s bravery that I remember. It will be his selflessness.

It will be his eyes – those eyes! – and his smile.

It will be his laughter, his wit, and his humour.

It will be the caring and compassionate way he treated others.

When Luke was facing this recent surgery, he was afraid.  But him being afraid didn’t stop him from checking in on my son, Isaac, during his own surgery and recovery, ironically the same surgery Luke was facing a few weeks after Isaac’s.  Luke would text to ask how he was doing, he’d post messages of love and support on Facebook.  He’d think of Isaac, first, and push aside his own fear.

And his Mom, Debbie, he always put her first.  The love he had for her was unending and unconditional.  He was proud to be her son, proud to have her by his side during his MPS journey.

As parents raising children battling life-threatening illnesses, we often do everything we can to ease their burden, to find solutions.  We scour the internet for news about the disease, we look for alternative treatments and therapies, we hope against hope to alter the path our children are on.  Luke often helped ease that burden that only a parent can feel, and he did it often.  Once, while he found Debbie again scouring the Internet, he asked her what she was doing.  Debbie replied that she was reading about Morquio Syndrome, to which Lucas categorically stated “Don’t try to fix me, Mom.  I’m not broken.”  It was a quick comment, a small statement telling her how he felt about his disease.  But that small statement made Debbie realize that he was right – he wasn’t broken.  MPS was a part of Luke, and it didn’t make him broken. Debbie held onto those words throughout Luke’s life, and she recalled them during his final days with us.  And those wise words spoken all those years ago by a 5-year-old version of Luke still rang true – Morquio never meant that he was broken.

My favourite story that Debbie often tells me about Luke was when he turned 16.  Again, as parents facing what we face for our children and their future, we worry about what any given day, what any given year, can bring.  When Isaac was diagnosed, we were told he may not live to see his teenage years.  Debbie was told that Luke may not see his 16th birthday.  Luke knew this and on the morning of his 16th birthday, he walked into his Mom’s room, woke her up, and said “Good Morning, Mom.  I’m still here.”

To me, that’s the most heartbreaking and beautiful statement one could ever hear at the same time.  Heartbreaking because he was clearly sharing the same burden as his Mom, but beautiful because he made it and could share that beautiful moment with the person he loved most in this world.

IMG_8405He felt the same about his brother, Zane as well, his ever present partner as they battled MPS together.  I know Luke cared deeply about Zane, and saw the strength in Zane that we all saw in him.  Zane followed him into the Clinical trial.  They fought the disease together.  They helped save others – together.  The love he felt for Zane was matched only with the love he felt for his sisters, Nicole and Lexi, and the love he had for Jay, his step-father.   All of them will be forever changed without Lucas in their lives.  But they will forever be better people because of  the time they had with him, and because Luke made everyone strive to be better people through the example he set, and the love he gave.

When my friend Justin passed away last year, I wrote a blog in his memory as well.  In it I talked about another friend, Stuart Mclean, who used to have a radio program called the Vinyl Cafe.  Stuart once wrote a story called Love Never Ends.  It’s one of the most beautiful pieces of writing I’ve ever read, and I re-read that story often when I’m struggling with difficult things in life.  It’s the story of an older lady coping with the loss of her husband, her life partner and best friend.  After his passing, she finds a framed photo of him that he hid for her before he died.  On the back is written  (from Corinthians 13:7):

Love is patient, and love is kind. Love is not jealous or boastful. It is not arrogant or rude. Love does not insist on it’s own way. It is not irritable or resentful. It does not rejoice in wrong, but rejoices in the right. Love bears all things, believes all things, hopes all things, and most of all, Love never ends.

What I wrote then about Justin and his family hold true for Lucas and his.  As much as Lucas was loved, he loved Debbie, Zane, Lexi, Nicole, and Jay just as much.  And the love they shared for each other won’t end with his passing.  That love will never end.

Every second we get to share with those we love in this beautiful world are important.  Every memory made, every laugh, every tear.  Every hand held, every hug given and received.  They all matter.  In his short 20 years in this world, Lucas knew just that, and he made each and every moment special – for him and for others.  So as I say goodbye to you, Lucas Braun, someone I was proud to call friend, someone who helped guide what I do, someone I know is a hero in the truest sense of the word, it’s not just your grace and dignity, your strength and determination that I’ll remember.  It’s not just your selfless nature, your eyes and your smile that I’ll remember.  It’s not just your laughter, your wit, and humour that I’ll remember, nor will it only be the compassion you had for others.

It’s all of it together that I’ll remember, along with the reminder to make every moment count.  I know you’ll want that for me, and you’ll especially want that for your Mom, for Jay, and for Zane, Lexi, and Nicole.   I know you’ll want us all, along with everyone who was lucky enough to have you in our lives, to love those we love stronger, to hold those who are close to us closer, and to cherish every laugh we get with each other, every tear we shed together, and every memory we share with others.  You’ll want us to cherish it all, to slow down and take it all in.

Along with everything else that made you, you, that’s the legacy that you’ve left with us.

Rest in Peace, Lucas.  Thank you for all you gave this world.

With Love,

A.

** Top Photo Credit: Shawn Van Daele

Today

17632086_10158386313365291_3818980000710984532_oToday, I popped my head out of my hidey-hole for a little while to do a little bit of work that was important to me.  It was tough – I’ve purposely left everything aside for a while as we all huddle together as a family and prep for Isaac’s surgery.

Which is tomorrow.

I purposely let my world stop turning.  Perhaps in an attempt to make time stand still – just to give me a bit of time to breathe.  Some time to cope.  Some time to get ready for tomorrow.

I took part in a webinar with some legislative folks from the US, alongside my colleagues from NYU.  I played a small part in our presentation but in the time I had, I wanted to speak up on behalf of the vulnerable patients out there looking for Hope.  Lord knows I know how they feel.  If I had the time today, I would have walked the people on the call through all that’s taken place in my world over the past few weeks, all while my world had stopped turning.  I’d walk them through the fear and anger, desperation and loneliness.  The waves of emotion that hit me, that hit my wife alongside me, as we try to come to terms with Tomorrow.  But it’s not something I can do – living in a world battling against the odds, battling such a devastating rare disease – isn’t something I can show people.  It’s an experience, and in times like these, one I wouldn’t wish on anyone.

It’s true, our journey has given us a unique perspective on life – one of priorities, one of love.  First and always.  But it’s also given us heartache and heartbreak.

Today, I wish I was able to convey to the legislators on our call how afraid I am at times like these.  I wish I could convey the thoughts that run through my mind – thoughts like “is the the last bedtime story I’ll read to my son?” or “are we snuggling up together for the very last time?”  Driving to the hospital today, I almost drowned in sorry and worry as I wondered whether we’d all go home together.

Today.  I wish today could last forever, because I don’t want tomorrow to come.

Yesterday, I spoke with our neurosurgeon in prep for tomorrow’s surgery.  In denial still, I asked if we really had to do this, if we really had to go ahead and see this through.  His response was blunt and awakening – either we risk paralysis with the surgery, or we face certain paralysis if we don’t.  He aptly put it – we’re in between a rock and a hard place on this, and there is only one way to get out.

Today, I was glad to take some time to do what I love most – standing up for those of you who are facing what we’re facing every day.  For those of you who also get hit by the those waves, for those of you afraid.  For those of you who only have Hope left to lean on.  Hopefully some legislators on the call will have heard my words.  And hopefully they’ll make a difference.

After my call, I came upstairs to give my boys a hug, to once again let them know I love them.  When I asked Isaac how he was feeling about tomorrow, he bravely said to me something incredible, and something I’ll try to keep in mind always: “I don’t have to worry about tomorrow, Dad, because it’s not today.”

Today, we’re spending the rest of the day together.  Isaac’s in the hospital and we’re going to try to spring him for the night before sneaking back tomorrow morning, long before dawn.  Today, we’re going to celebrate his 13th birthday in our hotel room, just the four of us doing what we do best – being loving and happy together.  Today we’re going to live and try to push our fears aside.  Like Isaac says, we can worry about that, tomorrow.

Thanks for all of the notes and messages that have come our way.  We’ve received them all, but have take some time away, as I said, to catch our breath.  We’ll update as soon as we can.  On this Easter Weekend, please keep our boy in your mind.

For Isaac, go out and hug the ones you love.  Today.  Call someone who means the world to you before that world stops turning.  You only get one chance at this, make the most of it.

Today.

And Everyday.

With lots of Love, and with thanks,

A.

War of My Life…

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At night while snuggling with Mom, he’s been asking if there will ever be a surgery that he doesn’t wake up from.  Quietly with me, he’s asking how people who are paralyzed from the waist down use the bathroom.

Good lord, I don’t want him to be afraid.

I’ve often said the most difficult thing about this journey has been being forced to see my own son’s mortality each and every day.

I was wrong.  The most difficult thing is watching him see it in himself.

It’s heartbreaking.  He’s carrying a weight that’s impossible to bear, but he’s doing it bravely and gracefully. And, for the most part, with a smile on his face.  That weight, however, has been more evident these past few days, especially during his visit with his hero last night.

As many of you know, Isaac’s mobility has deteriorated rapidly over the past 6 weeks.  Last Tuesday, he went in for some more testing and was admitted to the hospital so they could find the root cause of things.  In November, he had his second spinal cord decompression surgery, a nerve wracking experience, even knowing he was in the best of hands. Immediately after the surgery, Isaac’s mobility improved greatly – he was walking better, was more loose.  Today, however, he can’t walk flat on his feet, his balance is gone, he’s stiff and sore.  He’s been waking up numb from the waist down, getting tingling down his legs and inside of his foot.  If he raises his arms, he gets a jolt down his leg.  During one test last week, he couldn’t tell if the doctor was moving his fingers up or down while his eyes were closed.

And he’s scared.

Hospital results showed that the surgeons need to go back in and do another spinal cord decompression in the same spot, which will hopefully relieve these new symptoms and help him regain his mobility.  He’s been fitted for a neck brace, and surgery will take place this Thursday at Sick Kids.  He’s in the best hands – Dr. Jim Rutka has been his neurosurgeon since he was a baby.  Dr. Cengiz Karsli has done all of his anesthetics.  We trust them both fully.  Joining both of them will be Dr. Drake, the chief of neurosurgery at Sick Kids, and Dr. Zeller, the chief of orthopaedic surgery.  The best will be there to look after him.

Throughout his entire battle, Isaac’s always kept a positive attitude and has been more brave than anyone I know.  He still is today, as well.  Being fitted for his brace saw him laughing and singing – he was smiling and making us smile through our tears.  At the same time, however, he’s grown more afraid of things.  More exhausted and tentative.  He’s not able to cook with his brace on, and hasn’t updated his website in a few weeks.  At night while snuggling with Mom, he’s been asking if there will ever be a surgery that he doesn’t wake up from.  Quietly with me, he’s asking how people who are paralyzed from the waist down use the bathroom.

Good lord, I don’t want him to be afraid.

But he is.

We tried to get him out to see his hero, John Mayer last night.  John kindly offered to quietly sneak in to the hospital to visit Isaac if it looked like we couldn’t make the show.  In retrospect, we probably should have taken him up on his offer – spending a week in the hospital has left him exhausted and drained on top of the stress and worry he’s under. However, we thought heading down to the show would be a good outing for us all, and seeing John would raise his spirits a lot.

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And it did.  He loved the show (he especially perked up with Shawn Mendes took to the stage with John!)  But it was different, too.  Isaac wasn’t as talkative during his visit with John as he usually is, or laughing and joking.  He had a brave smile on his face, but the exhaustion was noticeable.  His discomfort in his brace was clear.  Isaac didn’t ask John to play a song (he regretted it after our time with JM was over and tried to text him in time to hear a song, however), and he didn’t want to chat about the new music much.  He just wasn’t himself, and hasn’t been of late, which, of course,  is completely understandable.

f9068d1a05a011e3b96f22000aeb0cca_7But last night drove it all home for me.  This is more real now than it ever has been before.  I was already broken, but watching him these past few days has been painful and heartbreaking.  I told Ellen how tough that was for me to see, and how tough it was for me to see people posting photos of their last time together compared to this one.  Last visit was all laughs and giggles, free spirited and stress free.  Ellen said she knows people like John will understand and that it makes this experience almost as real for those around us as it is for us.  I know his classmates understand.  I know his teacher understands, too.  And it will make them face that this is tough, but also allow them to celebrate with us once this is over and he’s back on the way to better health.  And Ellen’s right (she always is!)

Driving home today, Isaac told me he just wants this all to be behind him.  He doesn’t want to visit his classmates until this is all over, until he’s feeling better again.  He can’t wait for Thursday and is heading into that surgery with all the grace and determination one could ever hope for.  He’ll get there – we’ll all get there.

We have to.

Thanks, as always, for dropping in on our update.

We’ll update after surgery on Thursday.

With Love,

A.

P.S. – We rolled back into home an hour ago.  Isaac’s playing some Minecraft and we’re going to snuggle up and watch a movie together this afternoon.  Before he settled into his gaming, he did take some time to look at his brand new guitar that John gave to him as a gift.  He gave one to both Isaac and Gabriel, each signed with a special message – both meaningful and sweet.  Isaac loves his, and he perked up a bit last night as he opened it and pretended to play a quick song, and again as he checked things over today, telling me how much he loves it and how wonderful it is.  It was a thoughtful gesture, one that again shows how lovely John really is – we should be bringing him gifts rather than the other way around.  I’ll write about this and his message for Gabriel sometime soon.  For now, our energy is in getting to and through Thursday.

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