Isaac McFadyen | The Isaac Foundation

31 Oct 2018

Sticky Post By mcfadyena Posted in Blog Postings Permalink

The End of the Beginning…

Sticky Post By mcfadyena On 31 October, 2018

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.

—

04 Apr 2017

Sticky Post By mcfadyena Posted in Blog Postings Permalink

War of My Life…

Sticky Post By mcfadyena On 4 April, 2017

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.

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.

But 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.

06 Nov 2016

Sticky Post By mcfadyena Posted in Blog Postings Permalink

An Update, and Some Perspective

Sticky Post By mcfadyena On 6 November, 2016

Isaac had another good day today! He sat up a few times, was able to raise his head for a very short amount of time, and even stood (with assistance) for about 30 seconds! We are hopeful to stand for a bit longer tomorrow and maybe, just maybe, take a step or two! He is a long way from dancing at our GALA FOR A CURE next weekend, but he’s making progress and we’re thankful for every little inch we make forward.

A children’s hospital is a tough place to be in on the best of days. But on evenings and weekends, it’s downright sad and awful. Sound echoes through the empty halls, and the people who remain in the mostly deserted building are here for the most heartbreaking of reasons. We are some of lucky ones – we know that Isaac will be home soon, out and able to fight his disease for another day. But many kids in here won’t ever be leaving, and it really puts everything into its proper perspective.

Don’t worry about the small things – most things we get upset about pale in comparison to the fight the kids in here face every day. To highlight this, a stat call was just made on our floor for neurology, followed by a code blue. Worst of the worst. Some little one is suffering, some parent hurting. It shouldn’t ever be like this for our kids.

Please Keep things in #perspective. The last decade I’ve spent with Isaac at Sick Kids has taught me to do just that.

Forget the small things, the little annoyances, the petty problems. Cherish the time you have with those you love. And tell them as much. Go out more, do more, live more. Give your kids an extra long hug tonight, give them an extra kiss.

Thanks for being here, as always, and helping us along the way. Oh – yes, we are reading a book called “No Girls Allowed!” – it’s why Mom isn’t in the photo 😈

06 Jan 2015

Sticky Post By mcfadyena Posted in Blog Postings Permalink

Dr. Cengiz Karsli

Sticky Post By mcfadyena On 6 January, 2015

Hi Everyone,

There are people in this world who do extraordinary things, simply by doing what they love to do, by the way they interact with others. People who change lives without knowing it, make the world better just by being in it. Dr. Cengiz Karsli is one of those people.

Cengiz has been Isaac’s Anesthesiologist since the very start – since Isaac was 18 months old and about to undergo a massive spinal-cord decompression surgery. We’ve written about him often from time to time, and many of you have asked about him (and if you should ensure you get him for your own children!)

He’s always one to respond to emails when we need him, and goes out of his way to ensure he’s available to be here for Isaac and our family for surgeries. Ellen and I couldn’t imagine going through the stress of one of these surgeries without knowing that he is on hand to look after our son. He’s the calming presence we need before things begin, he’s the utmost professional as the surgery gets started, and he’s one of the finest Doctors at Sick Kids in Toronto, so we’re rest assured knowing that Isaac is safe in his care. Once all is said and done, he finds us quickly and lets us know how things went in the warm way that parents need. We arrived at the hospital this morning at the height of our stress. We left feeling relieved, relaxed, and thankful. We have Dr. Cengiz Karsli to thank for that. And we will never be able to thank him enough.

Cengiz was only supposed to be on call this morning. But upon hearing that Isaac was going to be in surgery, he scheduled himself in for the procedure to look after him, and then he stayed on until 1 pm. As we were heading out of the hospital tonight, Cengiz was coming back in – he’s on call for the next 12 hours as well. I’m sure he’s tired after a long day and staring at an even longer night. But he caught us as we were heading out the door and checked in on our boy, patiently answered all of Isaac’s questions, and bid us all a good night.

There aren’t many people like Cengiz in this world, someone who goes out of their way to make things easier for kids and families. Many MPS specialists are moving to a system where only 1 or 2 experts are used for surgeries on our kids. Their airways usually dictate that only the best should be involved with these procedures. We’re lucky that we have the best, and that he’s a wonderful person at the same time.

Isaac is now resting comfortably at our hotel for the night. We’re back tomorrow for a check in on his eye and his infusion. I’ll keep everyone updated as I can.

Thank you to everyone who checked in on us today – we truly appreciate your support.

Best,

A.

06 Jan 2015

Sticky Post By mcfadyena Posted in Uncategorized Permalink

Russian Roulette

Sticky Post By mcfadyena On 6 January, 2015

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,

A.

05 Jan 2015

Sticky Post By mcfadyena Posted in Blog Postings Permalink

Transplant Tomorrow

Sticky Post By mcfadyena On 5 January, 2015

Hi Everyone,

Sorry for the delay in posting – we’ve been busy with work, family support, and working hard to access treatments for kids across Canada that need help. At the same time, we’ve been taking a few weeks to spend time together has a family and get ready for Isaac’s corneal transplant, set to take place tomorrow morning.

I wasn’t going to post anything until all was said and done. But I received a few notes over the past week from wonderful supporters asking how we are doing. They noted that we’ve been posting a lot about the work we are doing on behalf of other families and were wondering how Isaac and the rest of our family was doing. Fair enough, and I appreciated the kind notes.

To say the least, we’re nervous – afraid really – of all that comes with this procedure. It’s daunting to think about the possibilities, so we’re concentrating on the positives and the potential benefits that this will give to Isaac. Imagine – he may be able to see the stars again, something that he stopped being able to see a few years ago. We are thrilled that his vision may be improved and we desperately hope everything will go smoothly.

I’ll do my best to update how things are going. All 4 of us are heading into Sick Kids Hospital this evening, with the transplant set for early tomorrow morning. We’ve got the best team possible looking after Isaac’s care, including his longtime Anesthesiologist Dr. Cengiz Karsli, pictured with Isaac below.

Thanks for checking in. I’ll update when I can.

A.

07 Oct 2014

Sticky Post By mcfadyena Posted in Blog Postings Permalink

Isaac Update – Corneal Transplant

Sticky Post By mcfadyena On 7 October, 2014

Hi Everyone,

I’ve just returned from one of the most rewarding weeks I’ve ever had in my role as Executive Director of The Isaac Foundation. I’ll save updating on all that was the MPS and Adulthood Conference for another blog posting. For now, I wanted to give you an update on Isaac’s health as the conference, for me, was overshadowed by the news we received yesterday (and while I was still away) that Isaac requires and will be undergoing double corneal transplants soon.

This news was shocking and upsetting to us, but not surprising. We’ve always known that this was on the horizon – or that the possibility of this was on the horizon. But he’s been so stable in his health during the past 6 months that it left our minds as a possibility. But stable isn’t quite the right word – he’s improved since January, improved considerably. I guess this is why the news we got yesterday was a tough to take.

First off – Isaac’s being incredibly brave. Please know that. Me? Not so much, but I’ll stay strong because it’s what I have to do. He expressed very eloquently that how his eyes are important to him because he need to be able to read (he’s a veracious reader and it’s unimaginable to him that that could be put in jeopardy.) He wants the surgery to protect that hobby, which is both incredibly cute and heartbreaking.

Now – corneal transplant…what is this and why are we here now?

Kids with MPS accumulate a buildup of cellular waste in their bodies known as glycosaminoglycans, or GAGS. Enzyme Replacement Therapy (ERT) helps to break those GAGS up and clear them out of the body. But sometimes ERT doesn’t prevent the clouding (caused by the GAGS) that takes place in the eyes. And Isaac has always had corneal clouding. Quite severe, in fact, but it’s been severe since he was very young. In fact, if you were to look at Isaac’s eyes today, they don’t have much colour – they are grey due to the clouding.

Isaac’s glasses have corrected his vision over the course of the past numbers of years. The clouding has continued to get worse – to the point where the doctors haven’t been able to see into his eyes for about 2 years. But still – his vision has been stable. A big change happened, however, over the past 6 months. Vision in his left eye has deteriorated considerably – 20/30 down to 20/80, and this is quite concerning. The result? A decision to move on with the transplants that we thought were still a number of years off, in the very least.

Doctors are very good at doing this surgery, though I have to admit that I’m still very scared and worried. But our MPS community is amazing, and many parents are rallying around us with love and support – something I’m truly grateful for. And Isaac’s friend since childhood, who also suffers from MPS, has had both of her cornea transplanted. Her family will be a great resource for us as we embark on this latest battle, and she will be able to talk to Isaac about what to expect.

And quite serendipitous – when I arrived home, there was an invitation in my email for me to tour one of the best (if not THE Best) transplant clinic for kids with MPS in the US. I’m excited to attend and, perhaps, garner a bit of information on the process along the way. The clinic specializes in bone-marrow transplants and stem-cell transplants, but they be a wealth of information for me for this comparatively smaller and less serious procedure.

Anyhow – I feel a tad better now that I’ve written this and the decision has been made. It was hard to get the news while I was away. All I wanted to do was hug my boy, struggle together with my family, and be here for each other when we needed it most. It was a tough night last night, and a long flight home. But as soon as I arrived at the school to pick up my boys, they both jumped into my arms and hugged me for what seemed like an eternity. And Isaac looks good, and strong, and – as he always does – brave. He can do this, and so can I.

Isaac shared the news with his best friend at school, Amy. I’m so thankful that he has someone he can trust to talk to, and I’m sure it made him feel better to share the news with his friends.

I’m listening to Danny Michel as I type this blog update – poignant because he’s playing at our upcoming Gala For A Cure. The song below is called “Just The Way I Am”, and it’s providing the perfect soundtrack for my frame of mind right now as I think about Isaac, his bravery, and the joy I know he takes in having a supportive friend to talk to when things get tough. It’s below for you to listen to as well – it really is a beautiful (and perfect) song for this posting.

Thanks for letting me ramble on. I’ll update with more information when I can. Thanks for always being here for us and our kids.

With Love,

A.

12 May 2014

Sticky Post By mcfadyena Posted in Blog Postings Permalink

Surgery

Sticky Post By mcfadyena On 12 May, 2014

Hi Everyone,

Isaac’s just gone in for some routine surgery – removal of a dental cyst and a full eye exam under general anesthetic (his eyes have clouded over so badly that they can’t see in anymore, hence the more advanced look at things today.) For most families, that is routine. But for families dealing with MPS, anything under a general anesthetic is anything but routine, which is why Ellen, Gabriel, and I are sitting here, stressed and worried for our little boy.

Children suffering from MPS have compromised airways, and general anesthetics should be avoided at all costs. I’ve heard of too many complications that our beautiful kids have had while under a general to sit here and be relaxed about the process. MPS Specialists always recommend ensuring the best anesthesiologists handle our kids, and we are lucky to have the best today.

We are in the Surgical Waiting room at the Hospital for Sick Children, a place that I’ve grown accustomed to hating. The tension in this room is unbearable, and the waiting is worse. I can’t count the number of blog entries I’ve written from here – it gives me something to do to keep my mind off things.

Parents and families dealing with MPS gain a unique perspective on life throughout the entire journey, and perhaps more so while sitting in a room like this. Sitting here, we’ve given up our child to the hands and arms of some of the best physicians in the world, and we have to trust that things will go smoothly. I’m comforted in the fact that Dr. Cengiz Karsli (pictured above with Isaac), an incredible anesthesiologist that has handled Isaac’s care since our first surgery here, is once again handling things for Isaac today. We were initially told that he wasn’t scheduled for Isaac today, and our stress level went through the roof. But he arrived and immediately made us feel better that he was there.

When Isaac was 2 1/2 years-old, he had a very major spinal-cord decompression surgery. The compression was so bad that they had to route out a piece of his vertebrae with a diamond drill bit. Needless to say, it was a very difficult surgery and we were terrified for our son. A few hours into the surgery, Dr. Karsli came into the waiting room looking calm and relaxed – he was actually chewing away on an apple and had a smile on his face. He dropped in quickly to tell us that things were going OK and not to worry. That moment made us admire him immediately. It was something he didn’t have to do, but he did so to put our minds at ease, and I’ve always been grateful to him for it. He probably doesn’t even remember that moment, but we sure do!

His relaxed nature is so helpful, but the kindness and care he shows our son really sets him apart from the rest. Even if Isaac’s airway doesn’t give him any trouble this morning, we’ll always do whatever we can to ensure that Dr. Karsli keeps Isaac under his care for the next surgery (and there will be more). If nothing else, this process is easier on us all with him being here, and we wouldn’t have it any other way.

Thinking back to our first surgery, this room felt so lonely for us. Ellen and I sat here worried sick for our son, and it felt like it was just us dealing with things on our own. We had just started our charity, and were trying to figure out how we were going to find a cure for our boy before it was too late. Today, 8 short years later, it feels like we have an army of support behind us, and this room doesn’t feel as lonely as it did before (I still hate it, however!) I posted a quick photo of Isaac earlier, and we’ve received so many words of hope and encouragement, and I’m incredibly thankful for that. And with that same help and support, we’re well on our way to finding a cure for our kids, and we can’ thank you all enough for being here for us always..

I’ll update once Isaac comes out of recovery and once I find a spare moment.

With Love and thanks always,

A.

17 Apr 2014

Sticky Post By mcfadyena Posted in Media, Television, Uncategorized Permalink

The Isaac Foundation Featured on Global National News

Sticky Post By mcfadyena On 17 April, 2014

10 Feb 2014

Sticky Post By mcfadyena Posted in Blog Postings Permalink

Congrats, John Mayer.

Sticky Post By mcfadyena On 10 February, 2014

Hey Everyone,

Just a post to congratulate Isaac’s longtime pal, John Mayer, for being asked to perform at the Beatles Tribute that aired on television last night. Being asked to be a part of recognizing an iconic band like The Beatles isn’t small potatoes, and we couldn’t think of a better person to hit the stage in tribute.

Oh – it was nice to see the strap the boys had made for John as well. It looks great, and the boys are always so happy to see him using it. It was made and given out of love, and we’re thrilled it gets a bit of use.

Take Care!

A.

09 Nov 2013

Sticky Post By mcfadyena Posted in Blog Postings Permalink

The Pass

Sticky Post By mcfadyena On 9 November, 2013

I just had a touching moment with Isaac, another one of those beautiful moments when I marvel at how incredibly insightful and thoughtful he is.

Everyone who knows Isaac knows that he loves music. John’s his favourite, followed by Danny Michel and Adele. But he loves all music, and listens intently to the lyrics, often wondering about their meaning. He gets emotional, sometimes, at the sad songs, and he rocks out to the fun ones.

It’s easy for him, too, because we always have music on in the house. Or in the car. Or garage, or outside. Music is everywhere in our life, which is probably why we’ve made it a central component of our Gala For A Cure every year.

A few minutes ago, Isaac popped over and asked “Dad, which song was it that made you want to start The Isaac Foundation?” I was surprised – I haven’t told too many people when and how The Isaac Foundation came into being. But I have told those close to me – probably in one of my many emotional or reflective or “softy” moments. And I should remember that Isaac sees and hears EVERYTHING. It should come as no surprise that he’s heard me tell the story before. But he’s kept it inside; pondering, perhaps, how a song could start someone on the journey we’ve found ourselves on.

I smiled and told him I’d put it on for him. We listened, but he wanted to know EXACTLY what about the song made me want to start our charity, and our search for a cure. We skipped back to the start of the song and listened closely together, reading the lyrics on the screen at the same time. I watched him tear up as he read, and I described the moments in the song that woke me up out of my grieving, the message that got me the hell out of bed and on my way to finding a cure

Whenever I put that song on, I’m always transported back to those days after diagnosis – the awful, dark days when I couldn’t get out of bed. The weeks that I couldn’t eat (I lost 40 pounds quickly). The haunting nightmares I had, the dark, dark places my mind took me to. I remember driving through a dark February night, watching the stars, and trying to escape with some music. And I remember this song coming on and knocking some sense into me. I decided on that night that I wasn’t going to lay around and feel sorry for myself. My son, after all, wasn’t going to get better by me sitting around and waiting for the disease to take hold in him. Simply put, that February night changed my life.

Going back in time to that night always brings such mixed emotion, and it felt a bit surreal sitting beside the boy I’ve worked so hard to save and reliving it.

Isaac and I finished listening to the song together and we sat quietly for a long moment. He looked up at me and said “Dad. Would I be dead right now if you didn’t hear that song?” My heart aching, I told him no – I would have woken up sooner or later, and we would have figured this out either way. But I’m glad I heard that song that night. It’s provided me a turning point I can always look back on, and a reminder to always keep going forward, no matter what (or who) gets in the way.

There’s still many nights I want to cry out “Christ, what have you done?” just like in the song. More nights than I know what to do with. But there’s also many more nights when I remember the Oscar Wilde quote about all of us being stuck in the gutter, and only some of us turning to look at the stars (portrayed in my inspiration song, too).

My boy never ceases to amaze me. He is insightful beyond his years. And as we head into our Gala next weekend, and start our journey with our new Non-Profit (announcement soon!), I’m glad he waited until today to ask me about my inspiration for The Isaac Foundation. I needed to slow down and remember WHY we’re doing what we’re doing, and I’m glad I did.

Song and lyrics are below. See many of you next week in person or via our Live Stream from the Gala.

Thanks, as always, for your support.

With Love,

A.

“The Pass”

Proud swagger out of the school yard
Waiting for the world’s applause
Rebel without a conscience
Martyr without a causeStatic on your frequency
Electrical storm in your veins
Raging at unreachable glory
Straining at invisible chainsAnd now you’re trembling on a rocky ledge
Staring down into a heartless sea
Can’t face life on a razor’s edge
Nothing’s what you thought it would be

All of us get lost in the darkness
Dreamers learn to steer by the stars
All of us do time in the gutter
Dreamers turn to look at the cars
Turn around and turn around and turn around
Turn around and walk the razor’s edge
Don’t turn your back
And slam the door on me

It’s not as if this barricade
Blocks the only road
It’s not as if you’re all alone
In wanting to explode

Someone set a bad example
Made surrender seem all right
The act of a noble warrior
Who lost the will to fight

And now you’re trembling on a rocky ledge
Staring down into a heartless sea
Done with life on a razor’s edge
Nothing’s what you thought it would be

No hero in your tragedy
No daring in your escape
No salutes for your surrender
Nothing noble in your fate
Christ, what have you done?