Tag Archives: Childhood Cancer

Bicycles

Today, my 15 year old son grabbed two of his friends, hopped on his bicycle and they all rode 20 km into Wolfville together. They went to their old middle school and visited all their old teachers (one of whom he was sad to have missed). Later they met up with two other friends and played basketball, ate at his favourite pizza place, and tried out the hot new ice cream spot.

That is what they did. That was his day.

And in case you missed the important part of this very boring story let me say it again. Today. June 20th. My 15 year old son, who is now taller than I am, got on his bicycle – with a beating heart, lungs full of air, and healthy blood pumping it’s way through his healthy body to drive to Wolfville. Today. June 20th. He came back exhausted and sweaty and beaming from ear to ear having hung out with his friends. Having driven 20 km together. On a bicycle. On June 20th.

And let me say … bicycle ….well …. bicycle quite simply trumps ambulance.

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Today

Today I woke up at 5:15 am.

I kissed the kids and Craig goodbye as they left for school and work, and then went off to work myself. It was another day. A day that felt heavy because of worries I thought were real.

Today Craig went to work. He got dressed and prepared for meetings.

He made his lunch and read the news. He drank his coffee and left in time to get to Halifax.

Today Mark dressed in bright colours for Pride Day at school. He thought about Badminton try outs and tried not to be nervous about them.

He prepared to navigate the halls of high school as a 14 year old boy.

Today Megan submitted her courses for her final year at Horton. She donned a bright headband and bracelets for Pride Day.

She went to school incredibly proud to be partaking in her very first Blood Donation. She left voicing why she wanted to do it and her pride and determination to do so was palpable. She wanted to give life.

But today as she was giving life, as all of this was happening, as we were going about our everyday-day, thinking we knew what “heavy” was, our Jadyn, our SuperGirl, our light, our love, our positive shining star, took her last breath.

This wasn’t supposed to happen today.

But it did. It doesn’t feel real.

But it is.

And so I can’t let today go by without this:

We love you Jadyn. We will remember, honour and celebrate you. We will whisper thank you for all that you taught us about strength, optimism and courage. We will remember to laugh in hard times, to have close friendships, to be silly, to keep smiling, and to give back to those who have helped us along the way. This is how you lived your life and we promise we were watching and listening.

We promise we will do all of this … we will make you as proud of us as we are of you …. next year, next week, tomorrow … and even today … March 6, 2018.

Celebrities on Planes

When your husband texts you from the plane saying YOU’LL NEVER BELIEVE WHO I GOT TO SIT NEXT TO ON THE PLANE!!!!

But you haven’t received the photo yet.

So you sit and wait and think. OH MY GOD – WHO IS IT GOING TO BE? What famous person is travelling from Halifax to Toronto on January 26th that Craig knows I would be incredibly excited about?? Jim Cuddy? Drake? Meghan Markle? Prince HARRY!! (Because of course he flies commercial coach) OMG OMG could it be Bon Jovi??? It HAS to be someone INCREDIBLE AND IMPORTANT AND AMAZING for my easy going husband to be so excited and text me about it.

And finally the picture comes in.

And sitting there – with two huge goofy selfie grins on their faces – is my husband and my sons Oncologist.

And I start to laugh and cry at the same time … and I can’t stop doing either.

Because I couldn’t have been more right – about the incredible, important and amazing person part.

Period.

Unsigned Cards

In my bedroom, tucked up under the mirror of my dresser, you will find faded greeting cards. Perhaps a little sentimental but not particularly unusual. I bet there are millions of people around the world tucking cards that mean something to them up on their mirror. Cards that someone gave them. From loved ones.

It’s only when you take mine down and open mine up that you see where the anomaly comes into play. Because when you do, you would find no handwriting, no messages from friends or family, no signatures scrawled across the bottom. Just unsigned cards that look like they could still be sitting on a store shelf – except for the faded colours and curling corners.

Many years ago when Mark was sick, I found it hard to leave his bedside. But every once in awhile I would venture out for short periods. And during that time, all too often I found myself in the most unlikely of places.

A card store.

In I would stroll in a fog-like state. Slowly, with seemingly an unclear purpose. Up and down the aisles I went. Not knowing exactly what I was doing there, but knowing I was looking for something. Some kind of wisdom maybe. Something that may be in the thousands of words and sentences and carefully constructed paragraphs of these folded cards. 

And soon I realized.

Sometimes I was looking for strength, because so often I had given all of mine away. To him. To her. To Craig. To everyone.

Sometimes I was looking for something to speak to me. For inspiration. For light.

Sometimes I was looking to feel less alone. For a sign that, in fact, I wasn’t the only one in the whole world who had ever felt this way, on this day, in this place.

Sometimes I looked for levity. Something that made me laugh. That made me forget. That made me smile.

And sometimes I was even looking for hope. Maybe hope was hiding here amoung the ink and cardstock and envelopes. After all, it had to be somewhere didn’t it? 

Up and down the aisles of the store I would walk. Reading card after card. Opening each of them, not knowing what I would find inside. Crouching down to the bottom racks so I wouldn’t miss “it” if it was there. Whatever “it” was that week.

And then next week I would go looking again. But for something different, because by then my heart and mind would be in a different place and would need something new.

I gravitated there time and time again. These generic commercial card stores in generic commercial malls.

And more often than not I would in fact leave with a card in hand that the cashier would tuck inside a small flat paper bag. A card that never got addressed or mailed or even written in.  

Because it was for me. From me.

Yes. There I was – buying cards for myself.

How crazy is that?!  

I never told anyone this before. Mostly for fear that it sounds a little “one flew over the cuckoos nest”.  

But I guess we all find comfort and strength in sometimes the most unlikely places. Even a card store. 

Our journey with childhood cancer was a roller coaster. How could I ever expect anyone else to know how I was feeling all of the time? To know exactly what I needed and when? Why wouldn’t I go looking for it myself sometimes? On my own. 

And if buying cards for myself sounds odd … well … somehow at the time, leaving that little folded piece of paper behind in the store – something that could sit at my hospital bedside giving me strength – well somehow the act of leaving it there in the store would have seemed craziest of all.

So I Sit and Watch

My daughter and son both play basketball. Until they started playing, I didn’t understand what a full-on-contact, hard hitting sport it can be. There are times I would rather have them play football. At least they’d have padding.

Yesterday I was watching the last game in my son’s tournament. He plays on two different teams, a school team and a community team. I love watching him. I’ve found as a parent, there are so many aspects to the sports they play, not the least of which is my own enjoyment.

There are moments in life that are overwhelming just by the very nature of being a parent. Those moments where you sit back and just “see” your kid. See them excel or shine in some way, and you stand in awe at what amazing little human beings they are becoming.

And then there are those other moments that stop me in my tracks. The ones where the reality of our lives come rushing back. My son had cancer. My SON had cancer. And not just any cancer. He had a high risk, very rare cancer. The odds were not in his favour.

To see him do these things at this age, the simple act of playing a game of basketball, to see him have this life, it is just sometimes very emotional. I sit and watch him and realize that he is not only living, this kid is flourishing. Physically, emotionally, socially, academically. His attitude, his spirit. He is flourishing. If you were to line him up with his peers you would never pick him out as the one whose odds were against him. The gratitude I have can take my breath away. Watching him do simple things that everyone else around me simply take for granted. 

Yes, it overwhelms me. 

So here I sit. And I watch him play this game he has come to love. I watch him with a heart full of pride and reverence. 

But here’s the thing, there is also a part of me that watches with incredible trepidation.

My mind knows it has been 7 yrs since chemo. And I know it has been 4 years since a positive prognosis.

This is a good thing. We are out of the woods. My mind tells me we are so far out the woods. We are in a grassy field in the middle of the flat prairies of Saskatchewan with not a tree in the distance. But it matters not. Because I realize that I watch with a different set of eyes than these amazing mothers next to me. I just do. It just is.

I sit on the sidelines and smile and laugh and talk and joke. And ALL of this is real. None of this is fake or put on for a show. If you knew me you would know this. I sit and watch with all of these things – joy, eagerness and gratitude – 100% of the time.

But there is still this fear. And that too is there – 100% of the time. There are days it is near the surface, and there are days that it is buried so deep that I barely know it’s there.

But it always is. He is my child. It will always be there. 

A hard hit here. Knocked down there. How long will that bruise last? Will it come quickly and go quickly? Will I have to count the days? Where was he hit? What are his platelets sitting at? What is his ANC? Bruises. I lived and died by bruises for so long. And can I just say – worst sign of relapse to watch for. Ever. He is constantly covered in them. And tiredness and bone pain?  Tell me the difference between that and growing pains and teenage laziness? And what about all those sweet little drugs that affect bone density and heart function and foot drop? What will his next bone density test show? What about his next ECG? Will they be above or below his baselines? Should he be playing as hard as he is? What if the tests come back on the downgrade? Chemo does no favours for your developing bones nor your heart. 

And, and, and, and. There is a list a mile long of latent long term side effects. Some that we are still being followed up for. Some that are standard and some that are unique to his therapy. Is him smashing into walls and floors and boys two feet taller than him doing him any favours? His body has been through so much.  

Yesterday my eyes welled up for a moment when he went down hard on the court. And on the inside of five seconds all of these thoughts came rushing to me. As they always do and probably always will. But then on the inside of “six” seconds I push them back down again and realize that yes – of course this is the life I want for him – a life not one smidgen different on the outside than the rest of his friends. This is what life is supposed to be for him. Living big and bold and running in toward the basket for that “take” with no trepidation at all (at least on his part).

So I sit and I watch. I smile and I laugh and I talk with the other Moms. My friends. And yes, I hold my breath. But even as I do, there still isn’t one moment where I don’t continue to whisper thank you – for all of it. 

The One We Never Expected

We met him the first day we came down to 6. When we were initially admitted it was to the 7th Floor – only because the sixth floor was too full and had no room for us. Floor six was oncology/nephrology. You never want to be in the IWK. But you most certainly never want to have to press the elevator button for 6. 

But down to 6 we went. And smack. Everything was all too real. The IVs, the wheelchairs, the sheer number of staff and, of course, all the little bald heads.

And then HE came through the door. 

Well – he didn’t so much come through the door as he ran into it. Pretty much face first. And then once more with feeling.

I couldn’t quite get a handle on him at first. Who WAS this guy? He resembled a clown I guess, but not in the way you first think of them. He had no mask on, nor any big clown feet. No horns or balloons. He wore a baseball cap sideways, an oversized plaid blazer and his nose just had the smallest red circle on it. His eyebrows were blue. Not fake pasted-on eyebrows, they were real eyebrows, they were just painted blue. 

He was not loud or boisterous like you traditionally think clowns to be. But instead he was actually calm in many ways. He had a soft way of speaking, but in the goofiest tone. He always asked if he could come in and if we would like to play. He was possibly both the most respectful and yet foolish person I had yet to meet. Ever. He was such a juxtaposition. Who was he? A volunteer I assumed. I would later learn that he wasn’t of course.  

His puns were never ending, and as an adult absolutely ridiculous, but I constantly found myself laughing out loud despite myself. I never really understood why. Because let me tell you – these puns and jokes were lame with a capital L to a thirty three year old woman. But laugh I did. Again and again.  

But my laughter didn’t matter. What mattered was what Mark and Megan were doing when he was around.

  
And so he quickly grew on me.

On the surface I guess it was because he made my children laugh. Laugh out loud every day. But of course laughter was just the tip of the iceberg. Laughter wasn’t why he became the most important person in our lives for five years.

No. Not really.

He became that because of all the things that I didn’t see at first, all the things I didn’t know were important, but of course became important all too quickly. All the things that become – frankly – everything.

Consistency 

Things are sometimes different in a Children’s Hospital than what you first think. We were not followed by one doctor, but instead an entire team of doctors. We never saw only one nurse, but sometimes a dozen all in one week. Nurses, doctors, lab techs, all of these people came and went – different ones different days or weeks. But Buddington remained. There weren’t two or three or six or ten of him. There was just one Buddington. And when you are young, having consistency in people is pretty important.

Levity, not just Laughter

Many adverse events happen all around you when you are literally living in a hospital. Adverse events to you and to so many around you. Pain, relapse, secondary disease, illness, death. Levity – the kind that twinkles in your childrens eyes and that causes them to laugh out loud – well that is a gift.

No Expectations 

Every single staff person that steps through your hospital room door wants something from you or your son. Each one is incredible and each one we built amazing relationships with, but still, each one needed something from us. A procedure, a poke, a transfusion, a report on bowel movement! Except him. He just wanted to play. And only when we wanted to.

Positive Anticipation 

In a hospital setting, especially when you are in patient for six weeks at a time, you are so very aware of how short life is … but on the other side of the very same coin, ironically, also how long a day is. Buddington gave us something to look forward to in a day that is 24 hours long in a tiny little room that isn’t home.

Those are just some of the reasons Buddington became so important to us.

In my “head” I have always tried to respect the boundaries that come with a patient/family/staff relationship. It is not always easy – and is an entire book in and of itself – but it is important for staff, and healthy for families, and I understand why.

So in my “head” and in my conversation with others I talk about the Therapeutic Clown Program. Because that is exactly what it is. There is best practice and evidence that supports its implementation in children’s hospitals, and to refer to it as anything less than that undermines what Buddington is all about. A trained child-life professional who has specific knowledge, qualifications and skill sets. A health authority employee who researches and stays up to date on everything from pain management to chronic disease. The gratitude for the Clown Therapy Program and the support it receives from the IWK is immeasurable.

But in my “heart” he is just Buddington. He was, he is, in a word, perfect. And it was he – not peers or docs or nurses or patient navigators or psychologists or other parents – who became the most important person to us over the past ten years. The gratitude I have for this man is endless.  

He was … the one we never expected.

(If you “whisper thank you” like I do and would like to read more stories like this, press the follow button to receive emails when a new story is posted)

Oh.

I know I’m supposed to be listening harder.

I know I am supposed to be concentrating more.

Look at her.

It will help if you look at her.

Concentrate.

I think this is important.

But my eyes wander. 

Just a little. Not too much. 

I wouldn’t want to appear like anything but a mother who is paying 120% attention.  

Because that’s what I’m supposed to be doing. That is who I’m supposed to be.

There are a lot of cupboards in this room.

They are grey.

Up high and down low.

Cupboards full of information I guess.

Information for me?

Ok. Look at her again.

Concentrate.

She is trying to help you.

Wait.

There are labels on these cupboards.

They are made from a label maker.

I had one of those when I was 12.

Mine was blue. I loved that thing. I put labels on nearly everything I owned.

Crisp white stick-on strips with black neat capital lettering.

Wait.

Why does it say Palliative Care?

Where am I?

Hold on.

Something is wrong.

These cupboards are mislabeled.

I’m in a Children’s Hospital.

These are mislabeled.

It’s the Children’s Hospital.

I am in the Children’s Hospital.

He is in the Children’s Hospital.

There has been a mistake. 

A mis-label. 

Oh.

Wait.

Oh.

I want to glance at it again. Maybe I misread.

But I have to concentrate on her and what she is saying.

And of course I know. 

I know I didn’t make a mistake.

Not then.

Not now.

I still see it.

So many years later.

The label-maker label. 

White Strip. Black letters.

Oh.