September is here. A month marked by back to school and routine also carries another meaning for my family.
It’s Childhood Cancer Awareness month, but this September and for every September moving forward, there will always be one child missing. There will always be an empty seat at our table and an empty desk in the classroom. This year, there will be no sweet girl anxious and excited to enter grade one. She will not climb up the huge steps to follow her big sister onto the school bus or pick out a new backpack. I will not get to pack her favourites for lunch, braid her hair, or shop for new clothes. There will be no stories of new teachers and new friends. I won’t get to hold her hand as she embarks on her new adventure. Her big sister will stand alone for the token and treasured first day of school photo.
On November 18th 2015, my daughter, Phoebe, died of cancer. She was 5 years old.
Phoebe taught herself to read, but she never experienced the joy of the classroom. In Kindergarten, a special teacher kept her name above a cubby although it was never used. Each morning Phoebe’s name was read aloud during attendance – her classmates knew they had a friend named Phoebe, but they would never get to meet her. Phoebe would have loved every minute of school and although she was never able to attend, she was so proud to have a class and a cubby of her very own.
We have no back to school photos of Phoebe and her sister, posing on the front steps, back packs bigger than their little selves, smiling with pride. Instead, Phoebe’s big sister will ride the school bus alone and the great big hole that exists in our lives, will forever remain empty.
Phoebe was diagnosed with infant leukemia at 9 weeks old and she was given a 10-15% chance of surviving her disease and its incredibly harsh treatment. Imagine knowing that the chances your child will die, far far outweigh those that she will live. Despite an abundance of hope, years of fighting, two bone marrow transplants, immunotherapy, numerous clinical trials, years away from home, and every single treatment available, there was nothing to save Phoebe. In fact, every single treatment available amounted to very little and we ran out of options in Canada in 2011. We spent the following 4 years grasping at straws and trying new treatments in the US. We were never able to return home, and Phoebe died in the ICU at St.Jude Children’s Research Hospital in Memphis, Tennessee.
The Canadian government directs just 3% of all federal research dollars to childhood cancers and this, Phoebe’s story – is what 3% looks like. And it’s not good enough.
Phoebe loved life – she literally shined and found joy where many only saw sadness, but fighting cancer as a child and all that comes with this – she made clear to us. This was not okay.
Phoebe, and every child with cancer, deserves more than 3% of federal research funding. They deserve more than toxic and outdated chemotherapies that maim and damage their developing bodies and minds, more than pennies from a billion dollar health care budget. They deserve to grow up.
This September, please remember that kids get cancer too. Cancer remains the leading cause of disease related death for our kids. It is responsible for more deaths than all other childhood diseases combined. Many cancers that affect children have little hope of a cure and the children who do survive have a 95% chance of experiencing a devastating long term side effect. Just 3 drugs have been approved to treat childhood cancers in over thirty years and in Canada, children with cancer are unable to access out of province phase 1 and 2 clinical trials due to provincial healthcare restrictions, despite how targeted, innovative, and promising these trials may be. Not to mention that these trials are often the only hope for a child who has relapsed cancer.
It’s not okay.
You can help. Please stand up for kids with cancer. Share their stories. Share the stories of their siblings. Donate blood. Register to become a bone marrow donor. Donate to a childhood cancer specific charity. Help a local family dealing with childhood cancer. Wear a gold ribbon. Ask your elected official to stand up and speak up for kids with cancer.
If you are in the Ottawa area, please attend Gold on the Hill – Canada’s national childhood cancer awareness event held on Parliament Hill, Saturday September 17th. We can work together to change this story by sending a message to the Canadian government that we need to do better. And what better place to do this than where change happens.
We need to invest in research, and by doing so, invest in our children’s futures, because all children should get to stand proudly on the front steps as their just-as-proud parents take a back to school photo. No child should ever hear the words – I’m sorry there is nothing more we can do.
Jenny is a parent and passionate childhood cancer advocate, the latter role beginning in 2010 when her 9 week old daughter, Phoebe, was diagnosed with infant leukemia. Since this diagnosis, Jenny has worked to raise awareness of childhood cancers and advocate for change. She has co-organized national childhood cancer awareness events on Parliament Hill which have included lighting the Peace Tower gold to highlight the needs of children with cancer. She is co-founder of the Phoebe Rose Rocks Foundation – an organization founded in memory of Phoebe to raise funds for childhood cancer research, a founding member of Ac2orn, and a parent representative for C17’s Research Network. Jenny enjoys writing and has documented her family’s journey with childhood cancer and now shares struggles of a bereaved family in a blog titled Phoebe Rose Rocks. Jenny is a teacher and lives in Ottawa. She has two beautiful daughters, Mae and Phoebe.