I remember the day as if it was yesterday.
Sitting on the sunny terrace of the Lausanne hospital with Zoé’s mom, on a balcony perched beautifully overlooking the city of Lausanne, having a coffee and digesting the bad news about Zoé’s latest tests. Another mom joined us on that balcony, looking scared and exhausted, after spending days at her son’s bedside. Her 5 year old son has the “good cancer”, a leukemia with a cure rate of 80%, but now he was fighting for his life because of a massive infection caused by the low-immunity from the treatment.
The feeling of powerlessness. The urge to scream out loud, from the top of this building, over the city of Lausanne, to the world: We are here! Look at us! Do NOT forget us!
Children of the shadows … This is the saying that is being used recently to describe our kids while in treatment. With their immunity being too low to allow them participate in normal activities, they are hidden, protected, in order to keep them alive.
But we cancermoms, we want to be heard! We want our kids to be acknowledged (cancerdads too, but that day we were three moms 🙂 ). We want out of the shadows. We want our children, our heroes, to be known, to be seen, to be heard and especially, to never be forgotten.
That day, I started thinking about what I could do, in my little corner of the world, here in Switzerland, for our kids. And I thought about the awareness movement that was developping in the States, Canada, parts of Europe, Australia and all over the world… An incredible wave of solidarity about childhood cancer. This is when the idea of having monuments and historic sites illuminated in gold here in Switzerland came to me. September is the international month of childhood cancer awareness. Around the world during the month, monuments and historic sites will be illuminated in gold, the symbolic colour of childhood cancer.
Just as October and the colour pink are symbols of breast cancer awareness, with events and buildings being lit up in pink all over the world, the month of September is our time to raise awareness about childhood cancer. But still too few people know about it.
I didn’t know this before, but now I do: cancer is the leading cause of death by disease of children. My son had stage 4 cancer, but is in remission because we got lucky and his cancer was treatable, because of the research that was done by a few dedicated people. But too many childhood cancers, like neuroblastoma, sarcomas, some types of leukemias, and brain tumours, still have cure rates that are depressingly low, and those who are cured often have serious long term complications.
Yes, there is always a “but”!
There are people who continue to work at finding cures, at improving treatments, at saving our children. People who are passionate about their work; oncologists, scientists, researchers, who are dedicated to making a difference. We can all support advances in treatment and research, simply by demonstrating our solidarity for the cause.
In the 1950s the New York Times refused to print an ad for a breast cancer support group. The subject was too distasteful. And plus, there’s THAT word (you’re wondering, was it the word “breast” or the word “cancer”? Me too!) Back then most women who got breast cancer died. Now the survival rate is over 85%, and people proudly wear the pink ribbon everywhere. October being international breast cancer awareness month, major monuments are lit up in pink lights to raise awareness. Don’t get me wrong, this is so incredibly great it makes me want to jump for joy.
It makes me think of this quote by Margaret Meade: “Never doubt that a small group of thoughtful, committed people can change the world; indeed, it’s the only thing that ever has.”
But childhood cancer still remains in the shadows, and research is largely underfunded. A few decades ago, the type of cancer Elliot had, like most childhood cancers, was almost universally fatal. Thankfully in the 1950s, a man named Sydney Farber, a pediatric oncologist in Boston, defied the criticisms of his colleagues in adult oncology who said he should “leave the children alone, leukemia was incurable, let the children die in peace.” Cancer treatment back then revolved around surgery. But Farber had a crazy idea, that medicine could also be used to treat cancer when surgery was not enough… Or even when surgery was not possible. Like in leukemia, where there is no tumour.
So Farber kept trying. Kept searching, despite some pretty heavy criticism.
Then, a breakthrough.
Farber managed to stop cancer in a young boy with leukemia. This had never happened. Leukemia was fatal within weeks of diagnosis. That’s how fast it is. But this boy went into remission, using… Medicine?!?! Not possible. Leukemia didn’t form tumours, and without a tumour to cut out, there was no treatment. Injecting some chemical was a silly idea.
And yet, this boy, with advanced leukemia, went into full remission… for two months. Then the cancer returned.
You see? It doesn’t work. Give it up.
But instead of being discouraged, Farber was motivated. If it was possible for two months it could be possible for even longer… Or even, dare we even suggest it… to cure it?
So he kept at it, searching, testing. Within a few years Farber has succeeded in producing complete and permanent remissions in leukemias and nephroblastomas, using medicine…
This medicine was called chemotherapy.
Back then people thought he was crazy. He worked in a small laboratory in the basement of the Boston Hospital, with the help of, as the story goes, “one assistant and 10,000 mice.” Funding for research in children’s cancers was minimal to non-existent. When he published his first report, outlining his success in achieving remissions in 10 out of 16 leukemia patients, it was met with disbelief and ridicule.
Sidney Farber is now considered to be the father of chemotherapy. His official biography on the Dana Farber Institute’s website states: “He was convinced that the only thing standing between science and a cure for cancer was sustained research, sufficient funding, and the national will to bring it about.”
So why the little chemo history lesson? (Don’t worry, there is no test after.)
Because I know what you’re going to say after I tell you the next part of my story. You’re going to say it’s not possible. And I want you to remember Farber.
Childhood cancer today has an overall cure rate of 80%. That’s up from less than 10% when I was a kid. So it would be easy to think: Great! Our work here is done! And pat ourselves on the back for such a great statistic. And move on to other, way more serious things, other diseases and illnesses…
But wait. Childhood cancer is still the number one disease killer of kids. Number one. In fact if you take all the other disease killers of kids and add them all up, they still don’t beat cancer.
We can change that! We can make a difference! People are starting to notice that yeah, cancer sucks, but there’s something we can do about it! Together, we can make childhood cancer something not to be embarrassed about, but to be aware of and conquered. Remember, people used to die ALL THE TIME from bacterial illnesses like strep throat, or cuts that got infected with the tetanus bacteria, for example. And then someone invented antibiotics! And now we don’t even think about it anymore, how this horrible, embarrassing thing, bacteria, could attack us anywhere.
Is it sad and tragic that cancer attacked our kids? Yes. But we don’t want you to be sad. Our kids don’t want pity, none of us do. They want your support. We need to raise awareness and increase research. Why? Because it could have been you. As you read this post, one more child is diagnosed. One more family enters the cancer world. At some point, it will hit close to home.
Don’t pity our kids. Listen to them. And join the cause, not out of guilt, not out of pity, but because it’s the right thing to do.
Let’s turn September gold for childhood cancer awareness this year. Wear a gold ribbon. Zoé4life has been preparing them for the past few weeks and they will be available soon. Various stores, coffee shops and restaurants have offered to have some available at the check out counter for customers who wish to take one. Natalie has made over 1000 so far!
Put a gold ribbon on your facebook or twitter profile. Just click on the photo below (it’s Natalie, me, and Severine).
September will be GOLD! Geneva’s Jet d’eau will be illuminated in GOLD on September 4th.
Together, we can make a difference!