Benefits of Home Visits for Families of Children with Cancer
A Reflection from POGO Interlink Nurses
POGO Interlink Nurses are the healthcare team members who connect the family to important hospital and community supports—including school*—so it makes perfect sense that in-home visits are integral to our work. In fact, we rely on these visits to establish a connection with our patients, their siblings and other family members in a more meaningful way and in a safe place, which is especially important for siblings.
But just as important, the home visit is a critical part of determining how the family is doing. Home visits typically allow us to use observation and our assessment expertise to gain greater insight to a family’s circumstances which cannot be duplicated in virtual visits. Being in a family’s environment gives us a glimpse of how their lives are at the time and what added stressors they may have. The broad range of factors, including social, economic, cultural and psychological that influence family coping and their adjustment to a child’s cancer diagnosis can be observed in a home differently from meeting in any other environment.
Read more about the POGO Interlink Community Cancer Nurses Program and watch this video.
Family structure, poverty and access to resources can reveal themselves (literally) and avoid the need for us to ask questions that might be misconstrued as “intrusive.” Still, we believe that many parents will share more readily when we are sitting with them in their home. Also, it is during the home visit when we might see that, for example, three family members are sharing the same bed or there is mould growing in the bathroom. We come to better understand that a family might have difficulty getting their ill child to clinic because they do not have access to transportation or there’s an elderly or sick grandparent in the home who cannot be left alone. The home environment provides context for setting up teaching. It can tell us if the family is able to cope with the complexity of home drug administration, like chemotherapy; palliative care for a dying child; or providing supportive care to help prevent and manage any adverse effects of the child’s cancer and its treatment.
This reflection by POGO Interlink Nurses was written in September 2020, in the first few months of the COVID-19 pandemic.
POGO Interlink Nurse Marilyn Cassidy Wins Caregiver Award
POGO Interlink Nurse Marilyn Cassidy is a recipient of a 2017 Canada Cares Professional Caregiver Award. In the 42 years that Marilyn has been a nurse, she has worked at CHEO for 24 of those years and has championed childhood cancer care as a POGO Interlink Nurse at CHEO for 19 years.
According to Marilyn, "One of the things I love most about my work is the daily opportunity and challenge of trying to make the difficult journeys for patients and their families even just a little bit easier in my role as a POGO Interlink nurse, as well as the definite privilege of working with the most amazingly resilient children and their families. I am probably most proud of the CHEO Buddy Program, Quality in the Community, that we have developed over the years. The program is supported by Camp Quality and we partner with the University of Ottawa medical students to provide buddies for approximately 20 patients per year. This program has brightened the days of so many of our patients, provides respite for parents and provides med students, our future physicians, with a wonderful perspective on the family experience during treatment."
Marilyn's nominators had this to say:
Marilyn is compassionate, her work is knowledge based, family centred and highly principled and she enriches each of us who are given the opportunity to work with her.
Marilyn’s work with the Interlink team involves advancing the quality of life for children with cancer and their families and forging diverse community partnerships including social services, parent groups and schools. She has been involved relentlessly in school support and reintegration for children and their siblings.
She has been a mentor to many over her 40-year nursing career, including nursing and medical students; preceptorship and teaching to the greater health care community with in-services, presentations and involvement in pediatric oncology research.
Families from CHEO who come to Toronto for care praise her gentle, kind, knowledgeable work. Families come prepared and supported and remain connected to her while they are away from their principle treatment centre. She is respectful and flexible and has an innate ability to understand the nature of being a child with cancer, a parent watching their child go through treatment, and the sibling who often feels left out. She goes above and beyond, advocating for families on a personal and community level, helping drive provincial policies.
Her work with POGO highlights her ability to see the big picture and her committee work is the driving force that keeps the work moving along. She identifies needs and gaps and works to find resources and supports to fill the gaps. Currently, she is involved in several initiatives in POGO’s Provincial Pediatric Oncology Plan that advances the existing childhood cancer system.
As her POGO Interlink colleagues, we value her ability to think outside the box and therefore advocate beautifully for the oncology patients. Her wisdom and drive not only benefit her patients but all children with cancer in Ontario.
Marilyn has so many qualities but I think her main strengths are sustained energy, creativity and a drive to never stop improving service to patients, families and the community. She is a natural leader, leading by example for us all to benefit. Marilyn is exceptional! I cannot think of a better person to aspire to and to acknowledge in this way.
Sally Casey
POGO Interlink Team Leader
How our Family Changed the Day My Son was Diagnosed with Cancer
Our son Jonah was diagnosed with leukemia on October 29, 2014. Prior to that, we had been to see the doctor a couple of times for what seemed to be typical seven-year-old stuff. When he had headaches after being hit at hockey, we went to CHEO (Children’s Hospital of Eastern Ontario) where he was diagnosed with a concussion. Then when he complained of being tired all of the time, not wanting to eat and night sweats, we thought it was the flu and took him to the clinic. On the morning of October 28th, my husband John took Jonah to the lab to get his blood work done; the doctor wanted to check for anemia.
That night, I remember the clock beside the bed read 9:16 when the phone rang. My husband had just left for work and the kids and I were already in bed. The gentleman on the phone said, “Is this Jonah’s mom? This is the Dr. E from the clinic. I am calling because we got Jonah’s blood work back. You need to get up and take him to CHEO immediately. And I want you to remember the word platelets. Now repeat it.” I repeated the word. “Good. His platelets are at 13; one, three. I know that probably doesn’t mean anything to you, but Jonah needs to go to the hospital right now, do you understand?” I said that I did and he said, “Go now” and hung up.
Not even 30 seconds later Jonah walked into my bedroom and said, “Mum, I can’t take this sweating anymore.” It was pouring from his arms like an open faucet. I said, “It’s okay babe, we are going to go to the hospital right now.”
Everything shifted that night, even our family dynamic. It became all about taking care of Jonah. John is stepdad to Jonah and his brother Beaudin and we have a little girl, Maeve. The boys would typically spend every weekend in Kingston with their dad George, his wife Charlotte and her daughter Brooklyn. Jonah couldn’t do that anymore, we didn’t want to separate the boys and we were not willing to let any relationships slide, so George, Charlotte and Brooklyn often stayed at our house in Ottawa.
The usual daily routine quickly became more complicated. We adjusted our schedules and took time off work to accommodate caring for Jonah, school drop off and pick up for Beaudin, and childcare for Maeve. All day treatment meant all day parking and meals at the hospital, gas back and forth, and unexpected daycare costs. And having three new people in the house made mealtime and housework chaotic.
It was definitely a challenge blending the two families, but we had to or it just wouldn’t have worked for the kids. Everybody had their own stressor. For me it was fear of the unknown all of the time; George became obsessed with staying on top of the laundry; Beaudin had to deal with lots of questions at school; and Maeve went from one day in daycare to five because we needed the security of knowing the baby was safe and taken care of. It was the hardest thing our family has ever gone through—emotionally, physically and financially—but it has brought the eight of us closer together, especially the kids, and Jonah is the hub. He knows he has a couple of years left of treatment but he never seems defeated. He is so mature for his age. This experience has made him wise beyond his years.
—Satara Stephens
P.S. I would like to thank Marilyn, our POGO Interlink Nurse for being such a huge support to our family. Marilyn even spoke to Jonah’s class to help them understand what was going on and make things easier for Beaudin at school. I would also like to thank POGO and everyone who donates to the financial assistance program—it lifted a huge burden at a time when we needed all the help we could get.