September, for a parent, is a symbol of change. It's back to school time -- a new beginning, new friends, new classroom, new things to learn. Summer is over and a new stage of life begins.
But not for everyone.
Four year old Elliot was looking forward to starting school. A bit shy, he was nervous that first day and smiling anxiously at the sight of all the potential new friends. Off he went though, single file into the classroom with the other 22 kids, excitedly stepping into this new adventure.
Elliot went to school for a total of two weeks. Then one morning, quite by accident, I noticed a bump on his belly. A strange, hard lump. Worried, I brought him to the pediatrician the same day. When she lifted the shirt on my 4-year-old son, lying happily on the examining table, I could read in her face that this was serious.
At that moment exactly, my life, my husband's, our other two kids', and Elliot's changed forever.
What followed was a flurry of activity, all in rather urgent conditions -- we were sent directly to the hospital from the pediatrician's office. We arrived at the hospital and faced a series of tests and exams, and while we waited for all the results, fear settled in, and we started to slowly realize that this was serious, although we still had no idea just how serious it was...
And then we were called in to the meeting room with the team of doctors, and the diagnosis hit us like a brick wall: advanced cancer, stage 4, a huge 15 centimeter tumor that has completely swallowed up his kidney, his lungs full of smaller metastases.
The treatments began right away -- there was no time to lose, and no time to catch our breath.
The child who, just the day before was running and playing with his new classmates was now in bed in the hospital, in a new world that would be his new life until the end of the school year.
The treatments that were given to Elliot have existed for decades -- old chemotherapy agents discovered in the 1950s.
A few decades ago, the type of cancer Elliot had, like most childhood cancers, was almost universally fatal. In the 1950s, a man named Sydney Farber, a pediatric oncologist and researcher in Boston, defied the criticisms of his colleagues in adult oncology who said he should "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 not possible. Despite some heavy criticism, Farber persisted in his research until finally, a breakthrough. He managed to stop cancer in a young boy with leukemia. Normally, leukemia was fatal within days to weeks of diagnosis. And yet, this boy, with advanced leukemia, went into full remission... for two months. Then the cancer returned.
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 had succeeded in producing complete and permanent remissions in leukemias and nephroblastomas (Elliot's cancer), 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."
Because of this research, roughly, 60 years later, Elliot was able to take the same chemotherapy and his cancer could be defeated after 10 months of treatment.
In September of the following year, a happy 5-year-old Elliot headed back to school with his classmates.
It is a beautiful story with a great ending, one that gives us hope, fills us with relief and makes us believe that anything is possible.
We would like to believe that this is the same story for all children with cancer, especially nowadays, when chemotherapy has existed for over 60 years.
We want to believe that every child has the same chances as Elliot, because we live in a modern world and we think, research has surely advanced even more since then, right?
But no. Unfortunately, this is just not the case.
During those long months in the hospital, Elliot became friends with a little girl, Zoe. Zoe was also in treatment for cancer at the same time as Elliot -- the same hospital, the same time period. But another cancer: neuroblastoma -- a type of cancer slightly less rare than Elliot's but for which little improvements in treatments have been seen. Despite a medical team that did absolutely everything in their power to find the best possible treatment to save Zoe, her cancer could not be stopped, and she died in her mother's arms a few weeks after her first day at school, a day she had also been eagerly anticipating.
Zoe didn't die because nobody has any ideas for new potential treatments for her cancer. Zoe died because those potential treatments are not being researched. Her cancer was faster than the search for a cure.
Here is a fact that may surprise you: today, cancer is the leading cause of death by disease in children.
Why is research moving so slowly?
European legislation provides measures to stimulate research in pediatric medicines. Unfortunately these regulations have not had the desired effect for childhood cancer -- too often, pharmaceutical companies researching new cancer agents are granted exemptions so as not to be obliged to evaluate their products in children.
However, in the last few months, a new movement is afoot. Parents of children who have had cancer in many countries across Europe are uniting - a movement has spread across the continent to call for immediate changes to the regulations on pediatric medicines.
United by the same cause, these are moms, dads, oncologists, researchers, non-profit organizations and others, from all corners of Europe, demanding an immediate revision of these regulations in order to accelerate research. For the vast majority of these parents, it is already too late to save their child. They are doing this for the ones currently in treatment, the children arriving at the hospital today and tomorrow, for all the Zoes of the future.
September is an important month for parents -- not only because of the new school year. September is also International Childhood Cancer Awareness Month -- a month of solidarity with these families and children, an important month to talk about the importance of research. In Europe, every year, 6000 children and teenagers die from cancer -- it is time that we unite to change this number.
In solidarity with the children who will not be back to school this year, bring your support by signing our petition on Unite2cure.org.