Updated: Nov 1, 2018
“I believe the children are our are future
Teach them well and let them lead the way
Show them all the beauty they possess inside
Give them a sense of pride to make it easier
Let the children's laughter remind us how we used to be…”
We see our future in children, our own kids, the neighbourhood road-hockey team and in the passing school bus. Children’s cancer is a heart-wrenching topic and one that isn’t much talked about. Perhaps because we feel intensely that the innocence of childhood, the most undeserving of us to suffer is a challenge too great to think about, let alone deal with as a parent.
According to a recent article, “(2016) by the International Agency for Research on Cancer (IARC) indicates that the global occurrence of childhood cancer may be significantly higher than previously thought. The report, which relies on more than 100 cancer registries in 68 countries from 2001-2010, indicates that approximately 300,000 cases of cancer are diagnosed in children and teens under the age of 19 every year. The report also indicates that there are an estimated 80,000 deaths annually from childhood cancer worldwide.”
Kim Hunter has appeared on the front pages of newspapers, interviewed on national Canadian television. We spoke to Kim about her daughter Olivia, (full story here), and she recollects no parent ever said that their child would be diagnosed with cancer. After a long journey, Kim decided to start a group to support families in the London Ontario area. There was reluctance at first, however, her group is now so strong that they are hosting a retreat for the moms! More about that a little later.
As a parent of a healthy child, we asked Kim what her top strategies were when supporting a friend or family member with a child who has been diagnosed with cancer.
It's uncomfortable, but start the conversation anyway.
“Everyday we lose kids to cancer. If we can have parents of healthy kids start advocating for the treatments, research and trials necessary to help that will go a very long way. It’s a community effort. Who would not like to save a child? The squeaky wheel gets the grease, thus the more people who can take up advocacy on behalf of children’s cancers the better.”
As a parent of a healthy child, talk to them about their friend or family member who have cancer. Keep it simplistic and on the developmental level of the child. The other children in the same household may also be curious to know more or nothing at all and that is okay. By including them in the discussion, we teach them empathy and understanding. Similar to an end of life discussion with children, calling it death and dying is much more impactful and direct. The same goes for cancer. By saying that their friend has cancer, it relieves a lot of stress down the road when they themselves feel sick from a cold or flu.
Kim was very open about the good-intentioned or perhaps not so good intentioned “help”. “People send emails to what causes cancer. It’s frustrating. Another common guilt-trip is when mother-laws asked what I did wrong as a mom? There is a lot of blame that the mother did something to cause cancer. The constant overthinking of what I could have done differently while pregnant was more than draining on my already burnt-out state.”
When Kim’s third child came along, she specifically remembers that she would be completely stressed out, not eating well or sleeping enough and this cycle of blame and guilt would perpetuate onto the healthy children. “Cancer guilt is the worst kind of guilt.”
Kim suggests as a parent of a healthy child, still invite them to the birthday party, still share the stories of your own child and their quirks, when they lose their teeth and their own anxieties when it comes to the first day of school. It’s not a competition about who’s more anxious. Part of the isolation of parents with sick children is that they no longer feel normal. This may be weird at first, but a frank and open conversation beforehand can go a long way. Understanding that they may not join the party, however, the inclusion in the community and the world around them will go a long way as we all advocate for better care. Not because we are afraid that our healthy kids could be diagnosed with cancer any day, but because it’s the right thing to do for all children.
The gift of journaling can be a wonderful way to show parents that they are cared for too. When Kim started to write it was like a ton of weight lifted off her shoulders. She would reflect back on journal entries from when her child was very sick. Thinking back on that time it reminded her that they have had worse times and made it through. Kim never believed that she would share her writing with the world, however, she opened up her blog as an inspiration to others. Her advice? “Unless you try it, you’ll never know how therapeutic journaling is.”
When her husband passed away she wrote letters to him. She moved back in with her parents for a while and started writing in the early stages of grief, thinking to herself that if her mother finds these she’ll think she (Kim) lost her mind. Regardless of your religious beliefs, Kim believes that her late husband saw her write to him and this was immensely healing.
“All you want is your child to survive when you journal gains control back. At night, we have our support groups, the shower and the car is our space to cry and let it out. At night time is when your mind is going and going and going. Take the time to journal for your own mental health.”
“You think you are alone and then you meet other moms and realize that you’re not alone. It’s like a club you don’t want to belong to but you’re glad is there” Kim continued. “You’re not alone. It’s grief of a healthy kid, all the positives, your dreams and it changes everything. You have to look for them. I’ll find a way to let them know about our organizations. Other parents that totally understand what you’re going through. If it wasn’t for OPACC.org, I would not be able to have put the group together. Their support has been incredible!”
Kim’s fears were shared with the other parents too, the fear of losing a child, however, she mentions that the group she started is full of laughter, inside jokes and the sense of almost being back to normal. “Nobody wants to go to a sad pity-party group.” OPACC has a comprehensive list of how to help parents through this challenging time: http://www.opacc.org/help.
Financial support and research
According to the National Pediatric Cancer Foundation, only about 4% of all the cancer research funding goes to childhood cancers. “Make your voice known or support a local charity that is transparent in where the funds are allocated. Children’s cancers are different than adults. When the chemos were developed they were meant for middle-aged people.” Her child will have the chronic pain, non-stop nausea and other symptoms for the rest of her life. Aware that her child will only get worse as time progresses with susceptibility to more cancers, infertility and vision problems, the need for cancer-based treatments for children are of utmost importance.
Kim’s advice for parents of healthy children making a financial donation is to ensure that the funds go directly to research and that the company is accountable and transparent. Ask questions about the breakthroughs that are being made specifically to make cancer treatment for children less toxic and limit the long-term side-effects of these drugs and treatments.
We can all agree that voting is one of the biggest influential factors in bringing about big changes on a national and international level. “It should be that if you’re Canadian, you should be able to go to any study in Canada and participate”. According to Kim, this is not the reality. There are strict limitations to provincial studies, clinical trials and treatments. In many cases, the financial impact on family finance could exceed $50 000.00 in just the first year of treatment.
Current legislation does not provide enough resources to aid in this life-altering event for families. By educating ourselves about policies regarding childhood cancers we can all vote to change legislation for the better.
The importance of self-care
“If your child is going through cancer, you even miss your own doctor's appointment. They feel like they can’t go or they can’t afford it. The medication is not covered.” Making a special meal or treat for parents, helping them walk the dog or giving them time to go to their own dental or doctor’s appointments can be a great help. Parents of children with cancer place their medical needs at the bottom of the self-care list, so asking about practical ways that you can help them out will go a long way.
Kim is putting together a retreat for moms at the Windermere Manor in London, ON in February 2019 as part of the self-care giveback to her group. Learn more here: https://www.gofundme.com/retreat-for-pediatric-oncology-moms.
Thank you, Kim, for your advice on how parents of healthy children can truly support awareness, care and resources relating to childhood cancers.
We invite you to share this blog post with your family and friends. By starting the uncomfortable discussion via social media or email we can open up the doors that lead to healing.
If you know a parent who could use encouragement through this extremely challenging time, consider gifting Journaling Through as Support.
Special thank you to:
London Free Press
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