Childhood Cancer Speeches - BC Cops for Cancer

My son and I do some volunteer work with the BC Cops for Cancer. I've been asked in the past to say a few words to the team at various times. Thought I'd share a couple of things here.

(This following was something I had written for the team for after they had finished their ride for the year - a "thank you" note)

A Normal Average Day

I remember being in Children’s Hospital with Lucas on a Thursday afternoon at 4:00 p.m. a couple of weeks after he was diagnosed.

I remember this moment because it was the time when it hit me that everything had changed.
4:00 p.m. on a Thursday.

This is the time when I should be thinking about what is for dinner while Lucas’s older brothers have plopped themselves down in front of the T.V. to watch Pokemon, as they did every weekday after school.
Lucas would have pulled all the books from the bookshelf and been building elaborate roads and paths with them stretching from the living room down the hall to the bedrooms; his brothers arguing about which Pokemon would win in a battle and why.
A normal average day.

But on this day, I was in the hospital with Lucas, as I had been the day before, and would be for several days to come. I knew there were many planned days we’d be there; I was anxious about all the other days that we couldn’t plan for that we might be there.

My older boys had been sent to live with relatives. I wanted them to have consistency and stability. I didn’t want them to worry about who would be home for them after school and why.
As a parent, you never think you’d ever have to “let go” of your 8- and 6-year-old children. I knew they’d be safe and loved and really well taken care of. But it’s still not easy to send them off. I am their mother. I am supposed to care for and nurture them. I am the one who is supposed to tuck them into bed, kiss their boo boos, listen to their frustrations of a long day in school and referee their fights (they are brothers after all).

But Thursday afternoon at 4:00 p.m. I was painfully aware that that was all gone. In the blink of an eye, our normal average days had been yanked away from us.
I didn’t know when we’d get them back. Hell, I didn’t know if we’d ever get them back.
We didn’t have it on Thursday at 4:00 p.m., and with nine months of scheduled treatments, we weren’t going to have them back anytime soon.

Oh, how I mourned the loss of normal average days.

One of the many things that I love about the Cops for Cancer team riders over the years is how they “bring the normal back.” (Sounds like a Justin Timberlake song, doesn’t it?)
The team does this by raising money for childhood cancer research so that, one day, no family will have to experience this kind of loss. They do it by raising money for camp so that children get to do something normal like go to camp and meet other kids and just be normal average kids. They do it when they hang out with the juniour riders and talk and joke around with them like the normal average goofy kids that they are.

Sure, there are a lot of people who want to be special and unique and stand out, but there are so many others (children and their families) who would give anything ... ANYTHING ... to be normal for just one day ... even an hour. Like 4:00 p.m. on a Thursday.

“Thank you” doesn’t even begin to describe my gratitude for everything that the Cops for Cancer team riders do.
Maybe “I love you” sums it up better.

(The following is a speech I delivered to the team riders before they set out on their fundraising ride. Some riders have done it in previous years; others are new to the experience)

Why do you ride?

You will probably get asked that question a lot. Some of you, I'm sure, already have your reasons for riding. Others may be asking themselves: What the heck have I got myself into, and why exactly am I doing this? Well, that's what I'm here to talk about. Hopefully, I'll be able to provide you with a few good reasons.

Approximately 1300 children aged 19 and under in Canada are diagnosed with cancer every year. Childhood cancer in Canada boasts of an overall 80% cure rate. Some people think that's pretty darn good.
Let me relate that to the world around you. Tomorrow you'll be starting your ride and going to various schools and meeting very excited children. When you find yourself in that gym, surrounded by those eager faces, take a good look at them. Because an 80% cure rate means that, every year, 260 children will die. That's about the size of a small elementary school. So when you're at Lucas's school tomorrow, for example, that would be the entire population of his school plus another 80 kids gone this year alone.
Picture yourself standing in an empty gymnasium every year.
100% cure rate is the only acceptable cure rate.
A good reason to ride.

Two-thirds of children who survive cancer will go on to have long-term effects from the treatment. A third of them will be serious and potentially life threatening.
Research into finding kinder, more gentle treatments and procedures with less side effects are something you should pedal for.
A good reason to ride.

1300 children every year are diagnosed with cancer. Each one has their own unique story, their own dreams and hopes, their own obstacles and struggles.
That's 1300 good reasons to ride.

That's a lot of numbers and statistics. It can start to sound a little impersonal. So let me introduce you to one of those 1300 good reasons: my son Lucas.
He was a chubby, happy, inquisitive baby. Just after his first birthday, on August 20th, 1999, at 3:30 p.m. (the date is burned into my memory), a routine ultrasound scan uncovered two masses in his abdomen. He had a cancerous tumour on each of his kidneys. One kidney was completely taken over by cancer and the other kidney had a smaller mass on it. The technical name for this type of cancer is Wilms Tumour. He was treated with chemotherapy, surgery to completely remove one of his kidneys and part of the other one, and radiation to his abdomen. A lot happened in that time; too much to get into now.
There were a lot of ups and downs, a lot of sleepless nights. A few moments of ingenuity (Just how do you get a breastfed 1-year-old, who won't take a bottle, to drink contrast fluid for a CAT scan, or how do you get the liquid out of a gel tablet into his mouth and not get it everywhere?).
There were a few moments of laughter: what kind of bead do they give out for passing gas?
And a few moments of embarrassment. Like the time I was testifying as a witness in the courthouse at Main and Hastings during Lucas's treatment and being asked if I had any needles or weapons in my purse upon entering the building; of course I said no, then proceeded to dump the contents of my purse out which contained over two dozen syringes (with no needles in them), because syringes ended up being the answer to both the contrast issue and the gel medication issue ... as well as every other oral medication issue. I raised a few eyebrows that day, I'm sure.
Cancer affects the entire family in a myriad of different ways. Raising awareness, understanding and compassion is one way to lessen the psycho-social impact.
A good reason to ride.

Lucas finished treatment in March of 2000. Over ten years for him being cancer-free. You'd like to think that, after so many years, it would be very far behind us; we could just forget about it and move on. But we can't. It's not that simple. He's got some side effects from treatment and we also have a genetic component going on in our family. A long and complicated story.
Lucas goes annually for long-term follow-up care, which usually consists of blood work, ultrasound and x-rays, then an examination by the oncologist. Every couple of years and ECG and echo-cardiogram is thrown in to check his heart, because one of the chemo drugs he was given can damage the heart.
The cancer journey doesn't end when treatment ends.
A good reason to ride.

There are so many things related to the cancer experience which are hard to imagine. I remember being in the hospital with my older children before Lucas was diagnosed and seeing the "bald-headed kids" walking along the halls with family members at their side. I couldn't imagine what it would be like to be that parent - but I would, for a brief moment. What would that feel like? Then deciding it's something I could never do, and I didn't know how those parents did it.
We can all imagine what it would feel like to be told that your child has cancer. Of course, it sucks! If you could imagine that, you could come close to what it actually feels like.
But what is hard is all the other things you don't imagine. The things you never think about that you had no idea what it would feel like until you experienced it.
Things like comforting your child while they are given anesthetic to put them to sleep. I was not prepared for that; it's nothing like you'd imagine. One minute, you have a crying, fussy kid squirming in your arms; the next second, they are gone. It's not the gentle, natural drifting off to sleep that you've observed countless times before. Their eyes roll back in their head, and they go instantly limp. It's extremely upsetting to observe. And even knowing this, as I do because we've been through it dozens of times over the years, it never gets easier. It's a punch in the gut every time.
But it helps to have other parents to talk to, to share these experiences and stories, to reassure you that you're not going crazy.
You can draw strength from knowing that you're not in this battle alone.
A good reason to ride.

The hardest part of the entire experience, which still haunts me to this day, is what I heard. No, it's not the doctors and nurses using all those technical terms, it's not stupid comments, nor is it even the sound of your child vomiting.
One day, when Lucas was around six years old, we were riding the bus together, and a baby at the front of the bus was crying. Lucas asked me why the baby was crying, and I responded that sometimes babies cry when they are tired or hungry or bored. Lucas was quiet for a few minutes, staring out the bus window, and I could see a tear running down his cheek. He turned to me finally and said, "That's the sound that the hospital makes. It sounds like children crying."
I knew exactly what he meant. I can still hear the voice of a young child crying to his parents in the hospital hallway that he just wanted to go home, and then followed it up with a whimper of "Please let me go home. I promise I'll be good."
How do you explain to a child that they didn't do anything wrong and aren't being punished when that's exactly how treatment feels to them?
We need to provide them with positive experiences, like going to camp, that allow them to play and be kids ... and don't feel like torture.
Another good reason to ride.

Lucas has Asperger Syndrome, which is a form of autism. Basically what it means is that the world can be an overwhelming and scary place for him; he also has difficulty interacting and socializing with people. It can be terrifying for him. So for him to come and join all of you on tour is akin to being in an airplane getting ready to jump out with a parachute on. Or, in your case, getting ready to do the Tour de Valley ride.
But despite all his anxieties, he will come out. He comes because it's important to him. He wants to help all of you help children diagnosed with cancer. To him, you are all his heroes.
And while part of him wants to help other kids, there is another part of him that is thrilled just to be able to spend time with his real-life superheroes.
One year, I dropped off my shy and trepidatious boy with the Cops for Cancer team in the morning, and I don't know what happened that day, because I wasn't there, but whatever shenanigans that were going on did something to Lucas because that was not the same child I picked up later that afternoon. The boy I got back was a little more outgoing, was willing to take a few more risks, and didn't seem as afraid of the world as he had been before. That effect has lasted years.
One day with all of you had changed him.

Cancer isn't the only thing that can change a life. You do too! A very good reason to ride.

I've given you more than 1300 good reasons to ride.
So I ask you now: Why will YOU ride?

Parents: Protect the Internet from your kids

I've seen a lot of programs and information geared towards parents to talk to their kids about the dangers of being online. Stalkers, predators, bullies, fakers, hoaxers, et cetera, lurking behind all these various keyboards. But where do people think they come from? Another planet? Aliens have infiltrated the 'Net?
Nope. These are human beings. These are someone's children. Possibly even YOURS.

I have friends who are involved with Warrior Eli is a Hoax and I often read their blog. What caught my attention for a lot of these hoaxes is just how young some of these people were when they started out: 14 years old. These are kids.

What would possess a person to do something like this? Sure, there may be psychological issues at play for some of them, such as Münchausen by Internet. But is it possible that some of them are just bored and don't know any better? They start off thinking that it's just a wee bit of fun and then, before they know it, they are caught up in it?

Parents try and teach their children phone manners and how to interact face to face with others in a polite way, but do they all instruct their offspring on not only the importance of "Internet manners" but how to do it?

I'm sure there are parents who say to themselves, "Of course I've had a conversation with my child. They know how to behave."
Well, anyone who has spent any time around kids knows that just because you explain to them why they can't have a cookie before dinner and they don't have permission to have one, doesn't mean that they won't try and sneak one anyway when you're not looking. Understanding something and doing something are two different things.

And then there's those parents (yeah, we all know some like this) who refuse to believe that their perfect little angel could behave in anything but a perfect way, because their kids are always well behaved around them. Problem is there is no such thing as "perfect" and kids are going to test boundaries (particularly if they think their parents can't see them or won't know) and make mistakes. That doesn't necessarily make them "bad kids"; just makes them human.

Several years ago, I was not pleased to wander into a conversation one of my children was having with someone online. I could hear the other person talking through the speaker getting flustered with what my child was saying on his mic. They were playing some sort of game and my son was saying "What's wrong with you, noob? Are you stooooopid? All you have to do is [insert some technical stuff on how to configure things in the game - all spoken in a very snotty way; think of the Comic Book Store guy from The Simpsons]".
To add insult to injury, I could tell by the voice that the other player was a young 20-something male, and my son was only 8 years old and sounded very much like it. That's gotta hurt.

Yes, I took away my son's mic and explained to him why he shouldn't talk like that online (or anywhere) to anyone. I talked about respect and reputation. He seemed like he understood, but, much like sneaking a cookie, he continued to act like an ass online in text whenever I wasn't around.
Fortunately (and I sincerely mean that), it didn't take long for that particular gaming community to school my son on what they thought about his behaviour and that they weren't going to tolerate it [in much stronger language than what I had used]. At which point he was kicked and banned.
My son was extremely upset. And, yeah, bad mommy that I am, I did use it as an "I told you so" teaching moment. What you put out is what you'll get back.

I'm pleased to report that his online behaviour is much improved. He's not perfect; nobody is. But I was extremely proud of him one day for kicking and banning someone from a game he was running because they were writing derogatory comments and making fun of another player who had English as a second language. My son explained that to them and asked them to stop. He was ignored. Then my son calmly told that player that they were being mean and cruel, and then my son kicked and banned him from the game. He then spent the next four hours using a translate program and chatted and played with the player who'd been attacked, and they had a great time.

That's the kind of reputation you want your kids to foster when they are online. Particularly in this day and age. Everything they do online is potentially saved somewhere. The Internet has a LONG memory. You have no idea who is recording or taking screen shots of your activities to post somewhere else on the Web that you have no control over. In talking with some of the Warrior Eli is a Hoax folks, it's obvious that lots of people don't have a clue how easy it is to track down their identities online [legally]. Even using a pseudonym offers little protection.

So if you don't want to protect the online community from your kids; maybe you'll want to protect your kids from themselves. What seems like harmless fun to them now, may not seem that great 10 years from now when they are trying to explain to a prospective employer (or anyone) how they aren't the jerk that has been logged and splashed on the Internet accessible with an easy search. Or that they're no longer the faker/hoaxer who was just bored and now is memorialized on several websites for what they have done.
No one knows about all the stupid stuff I did as a kid unless I tell them, because there isn't a permanent written and/or pictorial record of it that anyone in the world can access. It's not like that anymore.

So when you're thinking about how to protect your kids online, stop and think about how maybe, just maybe, it's the Internet that needs to be protected from your kids.