SwissNic

Dear Odin

I didn’t get to meet you.

I’ve seen photos and films of you, and marvelled at how much you reminded me of Elliot. Was I imagining it? Or did you really have something in common?

Well, obviously, you had that one thing in common… Cancer.

When we were told our four year old boy had stage four cancer a few years ago, it was one of the worst days of my life. I couldn’t believe this could happen. Who would have thought a child can get cancer?

Only one out of every 10 thousand children will develop the type of cancer Elliot had, which is 0.01% .

The treatment was long, hard and changed us forever.

While we were at the hospital, Elliot and I became friends with Zoé and her mom. Zoé was being treated for neuroblastoma. It’s also a very rare cancer. And very hard to cure.

The last time Elliot saw Zoé was at the hospital, where she got to “assist” the nurse for Elliot’s blood test. Zoé really wanted to be a nurse when she grew up. She really wanted to poke people with needles. She thought it was hilarious. I think you would have liked her! She was always laughing. It made Elliot relax when she was there for his “poking”, because he had a friend who understood, and who had been through it.

By the way, Zoé also wanted to grow up so she could wear high heels. Those were her biggest dreams in life.

Well, of course she also had another dream. A huge dream. The biggest one.

She wanted to grow up.

Zoé died two days before turning five, because the adults of the world ran out of ways to try to get rid of her cancer. Since then, her mom and I have been working to try to do just that.

And then, there was you.

It was an email sent late at night, from my mom. I was in Denmark on a trip. I couldn’t believe it. How could it be possible? Another child in my family diagnosed with a cancer? No. It had to be a mistake.

I jumped on my phone and sent a message directly to your dad. I almost didn’t dare ask the question. What if he laughed and said, no, don’t be ridiculous Nicole, he has a flu, a virus, an infection, a cyst even, something odd but not cancer. Of course not cancer.

The odds of having rhabdomyosarcoma are four out of one million kids, that’s only 0.0004%.

Well you did it Odin, you managed to get a cancer even rarer than what Elliot had!

Despite this, just like I had done with Zoé, I really believed you would be cured.

I was in touch with your mom over the next long and very difficult months. We became virtual friends, bonding over our shared role as “momcologists”. And we were so hopeful. Why shouldn’t we be? You looked great. You powered through the harsh treatments, showing the world what courage and strength really looked like. I imagined I would get to meet you soon, when we went to Ottawa on a family trip. You could get to meet Elliot, he would get to see a little cousin who had had cancer just like him.

And then, two weeks ago, it all came crashing down.

At first, I held on to hope. I did tons of searching online (an obsession of mine. Some people have hobbies like painting or music or sports, I have childhood cancer research).

I clung to the possibility we could still get this.

I chatted with your mom online, and we kept searching for solutions, debating best treatment options.

Now, looking back, I think on some level we both kind of knew. Even though we never said it.

I urgently wanted to get photos and films of you taken, something professional and happy that your family could hold on to. Was it some kind of instinct telling me to hurry? I got my brother and sister involved, who dropped everything to make sure this happened right away and followed you around the park like paparazzi while you hammed it up, as usual.

In those photos, you are so full of life.

But four days later you were gone.

This is the reality of childhood cancer. This amazing photo of Zoé was taken when she was giggling and happy, and acting completely normal. She died 8 days later.

But there’s one thing I want you to know Odin, more than anything else: you didn’t lose your life to cancer.

Your life is a win.

It’s a win for all of us who knew you, even from a distance. And it’s a win because we learned from you, to be happy, have fun and play, and laugh in the face of adversity. This was exactly Zoé’s lesson for us too.

Cancer can’t win. I won’t let it.

Zoé4life will continue to work at finding better treatments for children with hard to cure cancer – so that someday, in the future, a mom or dad finding out their child has cancer won’t mean months of harsh treatments and no cure.

In the meantime, while I’m down here with Zoé’s mom and your parents working on this, you can feel free to play with Zoé and have fun. I can almost hear you both laughing.

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