Using scientific research as a springboard for discussion, CKN is distilling this research into practical narratives that will improve the quality of life for patients and offer deeper understanding and connection for physicians. Please join this Doctor-Patient conversation about parenting children with cancer.
by Susan McKechnie, CKN Childhood Cancer Section Co-Editor
When your child has cancer there is no ‘how to’ manual filled with answers to the many, many questions and concerns a parent has as they carry their family through the ups and downs of care and treatment. The available resources such as the many doctors, nurses and other professionals who are part of your child’s medical care team, will happily answer as best they can but are often not readily available or do not have the same day-to-day insight as another parent travelling the same path. Families who have children with cancer have a unique perspective on the everyday challenges faced by parents and can often offer ‘real-life’ advice.
When Marlene Carvalho-Hasip’s daughter, Selen, was diagnosed with leukemia in 2008 she met many other families during their numerous visits to SickKids. She was able to draw on their experiences as they traversed this new, rocky path. “Many of us kept in touch, emailing questions to each other, calling to discuss various things from treatment concerns to how we were coping. This group became a lifeline and we bonded together in our common battle.” Knowing that there were other families like hers who could benefit from the voice of another parent facing similar situations, Marlene started a Facebook group called ‘Mothers of the 8th Floor at SickKids’ referring to the floor dedicated to pediatric oncology at The Hospital for Sick Children in Toronto. Since then the group has grown to over 250 members with daily posts ranging from questions about nasogastric tube feeding, information on March break camps for kids with cancer to the encouraging effects of a blood transfusion.
Sitara De Gagne understands the power of this group as she continues with her own family’s journey with son, Hunter, now cancer free but with ongoing medical challenges such as chronic pain and fatigue remaining from his years of treatment.
She recently offered these beautiful words within the group and was met with thanks and love as other parent’s reacted to her voicing feelings that each one of them had experienced;
“I have been so moved by fellow parents, so kindly thanking me for giving their silent pains a voice. I too thought much of this was just me, but like a shameful secret exposed, I have learned that so many of our numbers suffer the same.
It is so very hard to walk this path. It is even hard ‘after’. It is even more difficult to explain to our other circles, how we as parents & families, and more importantly, how our courageous children often continue a treacherous path long after treatment. There is no diploma, no bow, and truly the finish line is often elusive…
I send out love and encouragement to all. For those stumbling at the beginning, for those in the trenches, for those who have found the rhythm of the cancer life style, for those sitting stunned and in shock, for those parents who’s arms ache for that one last hug. No matter where you are, we are all together.
Yes the cancer is gone, but Hunter fights on and his daily struggles are real and continue to threaten his every day. He suffers and endures many side effects some we hope will subside, others will be life long, and the reality is that still others may come. The future threatens and haunts as much as the past at times.
We continue to march on with our family and friends and shoulder to shoulder with our fellow cancer families. It has been so hard to see so many re-enter that intense fight, or to say until we meet again to many friends. And yet everyday there are new faces as another child is diagnosed.
I guess the reality is that for some, and our Hunter is one of those, it doesn’t really end even when you think it’s over.
We cannot forget about the siblings as well. These sisters and brothers of childhood cancer bleed in ways that most don’t know, and many never think about. They are fragile and strong. Tender, loving and sacrificing. They are in desperate need of love, support and reassurance. Their lives too have been threatened.
We are tired. We are grateful. We love deeply. We have stared death in the face more than once. We have stood and cried as Hunters friends have been stolen from their families. We are raw. But we are strong. Hunter is with us. We are together. We are blessed.
As I sit here watching him sleep peacefully silent tears gently roll down my face. The silent rise and fall of his chest is our greatest gift.”
Has your family been touched by childhood cancer? Parent’s and caregivers who would like to be part of this caring, informative group are able to request membership but should know that in order to ensure the integrity of the group will be asked a few clarifying questions from the group’s founder before being added.
Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book ‘A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer’ hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Meagan’s Walk; benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.
A note from Trisha Paul, M.D. Candidate, Class of 2018
Given the endless number of questions and concerns that arise when caring for a child with cancer, I am so glad to know that parents of childhood cancer patients have been able to connect as a community through the Mothers of the 8th Floor at SickKids Facebook group. I applaud Marlene Carvalho-Hasip for recognizing the need for enhanced parental communication and taking the initiative to start this Facebook group. It is exciting to see just how far this Facebook group has come over the years and what an impact it has had on the lives of so many parents with children who have cancer.
There is no doubt that the experiences of these parents are unique as well as the insight that they have to offer. Although these words of advice lie outside of what the medical field has to offer, adequately addressing the questions and concerns of parents seems fundamental to me. Each family’s experience with a child’s cancer is different, but there is often quite a bit that families can learn from others if given the opportunity to do so. By enabling parents to support each other, this Facebook group is in essence filling a void in healthcare. This group gives families a place that they can turn to, with friends that they can lean on. It is inspiring to hear about how parents are reaching out to other parents, both to ask as well as address questions and concerns, and how they are taking the time to help each other.
Sitara De Gagne’s words were incredibly moving, and they seem to reflect just what an impact this Facebook group has. I appreciate how she reminds us that cancer is a trajectory, and that its effects last for long after treatment. She reminds us that the impact of cancer is pervasive, into the lives of parents, siblings, and friends. She illuminates the great breadth of emotion, of desire, of pain, that all arise in the face of childhood cancer. Such challenges, feelings, and joys will likely resonate with many other parents, which demonstrates the great power that this Facebook group may have for parents.
I’m sure there are some families who may not be interested in a resource, and that’s ok too. Sometimes it can be overwhelming to see the diverse ways that cancer is affecting the lives of other patients and families. But for those who have unanswered questions, who don’t know where to turn or are looking for someone who may be able to relate to the challenges they face, it seems as though the Mothers of the 8th Floor at SickKids Facebook group is a great place to start.
Trisha Paul is a first year medical student at the University of Michigan Medical School who graduated from the University of Michigan with a B.S. in Honors English. She recently published the book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer, and she aspires to become a pediatric oncologist and pediatric palliative care physician. Trisha chronicles her explorations in learning, researching, and teaching about illness narratives at illnessnarratives.com.