So, recently, I volunteered at my daughter’s school. We went on a field trip. During the bus ride back to school I got into a conversation with Selena’s teacher who of course knows of her past at SickKids. She mentioned to me her daughter was sick; that she had a bladder infection. She mentioned how her daughter was screaming in pain and discomfort.
The next comment was one I have heard a million times before. She said:
“I was so terrified and am so sad. How, Natasha, did you deal with Selena having cancer?”
Funny thing is I just looked back at her. For the first time, words didn’t flow out in my usual strong mom spiel of, “Well, you know when you don’t have a choice you just handle it,” type of response. Instead I was more held back, a shiver came over me, words didn’t make sense in my head because I don’t really know how I got through it. I was possessed for those years, something bigger than me took me and drove me through the storm.
Now that it’s over and we can breathe and have reached the 3-year post-treatment marker, what I am not doing is handling it as well as I did before. I am one big emotional wreck, holding it together by a string, taking each day as it comes and trying to find my way all over again.
All this to say “strong mom” means many things; it’s as individual as we all are. We all handle things the best we can. From a tummy ache, toothache, bladder infection to cancer, when our kids get sick and are hurting, we, the moms, hurt for them. Some illnesses we can get over quickly; they come and they go; life threatening, critical illness for some can take much longer to heal from as the hurt is deeper than the surface. It boils in our veins as it triggers directly into our core and our hearts.
With today being Mothers’ Day, I send love and light to all moms, especially those whose babies made it to heaven. I know some of you. I feel your pain yet cannot ever know what it feels like to walk in those shoes. How does a mother, any mother, do it? Hmmm, good question; the honest answer still unwritten, I suppose.
By Natasha Koss
Natasha will be running in support of POGO at the Toronto Women’s half marathon on May 26. Natasha started running to help curb her anxiety when Selena was diagnosed with cancer. Please support her fundraising efforts at the link below!
My name is Lia Goh. I am 12 years old and I am a cancer survivor.
When I was three years old, I was diagnosed with acute lymphoblastic leukemia. I went through three years of treatments, including chemotherapy. I lost all of my hair; it almost grew back blonde!! And I received more blood transfusions than I can remember.
In fact, I don’t remember a lot about my cancer or its treatment.
Like how my parents had to take leave from work and my family rented an apartment in Toronto because I spent most of that first year in the hospital. Or how I was in isolation for a lot of that year. Or how I spent so much time in bed that my muscles atrophied, and my dad had to carry me everywhere.
I am old enough now to realize how lucky I am. I am lucky to have the support and love of family and friends. I am lucky that my parents had the freedom and the financial means to take the time off work to be with me. Many families don’t have that luxury. I am lucky to have benefitted, and I will continue to benefit, from the support of some incredible organizations, such as POGO.
And my dad always says that I am especially lucky to have benefitted from so many kids that came before me. From the research that has been done, and so many incredible services that have been created to support kids with cancer, their families and survivors like me.
From the time my brother and I were little, my dad would read a poem to us called “The Champion’s Creed.” In it, there is a line that has always stuck with me:, “Dedicate yourself to a mighty purpose.”
I can’t think of anything more mighty than helping to beat childhood cancer. So, I feel responsible to do as much as I can for all the kids who are fighting this battle now and all who will be fighting it in the future.
Watch Lia deliver her full speech here. Video courtesy of Natasha McKenty.
I am 23 years old, a college graduate and a current student in York University’s Sociology and Human Rights programs. My education is very important to me but it can be overwhelming sometimes. The workload combined with rising debt is stressful, while splitting my spare time between volunteering and family and friends has become difficult to balance.
I’m also a four-time cancer survivor. I had my first diagnosis, a brain tumour, at age 13. I’ve also had colon, colorectal and, most recently, breast cancer. At age 12, my brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Because screening was never done and we weren’t aware of our genetic disorder, my brother passed away from colon cancer. I have an inherited gene mutation, which increases my lifelong risk of acquiring malignancies and an ongoing anticipation of serious health concerns.
My life is filled with medical appointments, medical treatments, school work and other everyday commitments, and so I have always tried to be strong and brave, pushing my feelings down so I could just keep moving forward. But there is a price: fatigue, change in appetite, poor concentration, feelings of restlessness, loss of interest or pleasure in activities, irritability/lack of patience, dry mouth and shortness of breath/tightness of the chest, to name a few. These are all prominent when there are multiple things happening at the same time in my life.
Until recently, I just interpreted these events as “stressful,” but what I didn’t realize until I learned more about the symptoms of depression and anxiety, is that what I was feeling was not just stress, but a blend of mental health issues.
These symptoms don’t just affect me, they take a toll on the people around me. And while I know this is the time when I need to acknowledge what I am going through and ask for help, I often feel that I don’t have any options or that others won’t understand.
I realize that I play the biggest role in my own self-care. Yes, I am going through many issues, medically and psychologically, but what I’ve experienced so far has only made me stronger. So how can I use that strength to achieve a better quality of life? How can I minimize the stress in my life and increase the things that bring me joy, like volunteering? How do I find the time to connect with other survivors who understand what I am going through, when I feel exhausted from the medical appointments and school work? And how do I maintain a hopeful outlook when I know that I may continue to battle various cancers for the rest of my life?
To be honest, I haven’t exactly figured it out. But I do know that it is a process that I need to consciously work on each day, and that my psychological well-being is worth fighting for.
POGO’s Childhood Cancer Care Plan has as one of five goals integrated psychosocial care at all stages of the cancer journey. A key objective is to ensure integration of psychosocial care into standardized care planning to improve quality of life for patients, families and survivors like Yasmin. Learn more.
Eleven nurses make up the POGO Interlink Community Cancer Nursing Program and, together, they are on the front lines providing school support and care for children with cancer and their families. They meet families at diagnosis, and are with them through treatment, and, should it happen, through recurrence and palliation as well. Here’s how these nurses are making a difference by connecting them to much-needed community services.
Q. How are patients and their families referred to a POGO Interlink Nurse?
Families are referred to a POGO Interlink Nurse primarily when their child is diagnosed with cancer at the main treating hospital, through members of the healthcare team—ward or clinic nurses, pediatric oncologist or social workers. To raise awareness of our presence across the hospital, POGO Interlink Nurses make presentations to our colleagues to explain the role we play in caring for the child and their family. Families may also be referred to POGO Interlink through their POGO Satellite Clinic or by a physician when the child is returning to school after treatment. Because of the long-standing reputation of the program, families even hear about POGO Interlink Nurses through community agencies, like their Local Health Integration Network, or through their social circles by other parents of a child with cancer.
Q. What questions do parents typically ask when their child has cancer?
Whether in our hospital or home visits, many of the questions parents ask when their child has cancer are related to chemotherapy, finances and school. On the practical side, we review the educational information they received at discharge, like medications and treatment protocols. But, on the emotional side, parents have many questions about why their child got cancer. “Was it something I did?” “Was it exposure to cleaning chemicals?” “Was their cancer inherited?” Parents are also seeking answers to help them plan long term. “How long will treatment last?” “How soon will my child go into remission after a bone marrow transplant?” “How many medical appointments should I plan for?” Answers to these questions help with family decisions about when and which parent can return to work.
Q. How do POGO Interlink Nurses work in the community to support children with cancer and families?
Each family has unique needs but when a family receives the news of a new diagnosis, it is overwhelming. How they will manage financially is usually top of mind. POGO Interlink Nurses identify and help prioritize access to available resources and services. Financial assistance is usually the initial topic of discussion followed in time by other supports and services.
We work with agencies like the Local Health Integration Networks to acquire equipment and services to set children up at home when their care is complex. We also work with coaches and instructors in such extracurricular activities as Brownies and hockey. In one instance, a family asked us to speak with a group of neighbours to give the other parents and their children a better understanding of what they were going through.
And of course, we consider the grandparents who are not only concerned for their grandchild but also for their child, and who themselves may have their own health concerns.
Q. How do POGO Interlink Nurses work with the school system to support the education of a child with cancer?
POGO Interlink Nurses are in the unique position to work with the schools to support children with cancer, their siblings and parents, teachers, principals and classmates. We often advocate for families when there is a delay in the start of home instruction. POGO Interlink Nurses can visit the school and provide a classroom presentation, either in the child’s class or their sibling’s. The information we share is determined in collaboration with the parents and the child and our goal is to provide accurate and age-appropriate information, to answer questions and to involve students in supporting their classmate.
Providing customized school support can be complicated but it provides an additional layer of support for the child/family and relieves anxiety about academic expectations, return to school and peer relationships.
We have to consider how much personal health information can be shared. If the school is making the request for a presentation, we have to ensure the family is on board. And, in all instances, once the child with cancer is at an age to weigh in (usually Grade 3), the child must also consent. The more difficult school visits are when we are not able to be transparent about a child’s diagnosis or a recurrence of disease. In one situation, a family wanted us to talk to the class about the importance of hand washing for their “sick” child. They did not want to disclose their child’s cancer diagnosis. In such a situation, our role is to help educate the family about the importance of transparency in avoiding misguided assumptions. And even though a family might have been completely transparent at diagnosis, the recurrence of cancer and the fear of a poorer outcome this time around may make them more guarded during a subsequent classroom presentation.
We also have to be sensitive to the demographics of the classroom—if a student has had a family member with cancer, what will a classroom presentation about cancer trigger for them?
Q. How does the work of the POGO Interlink Nurse help others on the child’s healthcare team?
We work very closely with the healthcare team, sharing information from home and community to keep them informed about what is going on. Because POGO Interlink Nurses make home visits, we are privy to specific family dynamics. We are able to let others on the child’s healthcare team know if the parents are also caring for other sick family members, like a grandparent or sibling, or if there are other undisclosed situations. These kinds of disclosures may have an impact on the family’s ability to get to appointments and are important considerations in providing and receiving care.
POGO Interlink Nurses have the unique privilege to work in schools to support children with cancer, their siblings, teachers and the administrative team, and to be with the family for the entire trajectory of care. By being a link to community and hospital, POGO Interlink Nurses are vital in connecting many dots for all members of the child’s healthcare team in ways that help provide the right care in the right place for the best possible outcomes.
POGO Interlink Nurses work out of Children’s Hospital of Eastern Ontario (Ottawa); The Hospital for Sick Children (Toronto); Children’s Hospital (London); McMaster Children’s Hospital (Hamilton); and Northeast Cancer Centre, Health Sciences North (Sudbury). They serve their immediate and surrounding areas, including Barrie, Simcoe, Muskoka, Peterborough, the Greater Toronto Area and northern Ontario.
You’re young and recently wed. You’ve started a family and are trying to make ends meet financially. You used to think eating lunches out was a big expense. Now there are diapers, special food, daycare, sports and other activities, and the need for more space! Hiring a sitter so you can go to dinner and a movie costs more than the dinner and movie! Your spending priorities have shifted but for the most part you’re managing.
Then your eldest child starts to bruise easily, gets fevers often and doesn’t want to eat. Over a relatively short period of time you are told your child has cancer. Leukemia. You’re assured that survival is good and your child has a good chance to beat this. But the treatment hospital is over an hour’s drive away. You have to plan for many nights in the hospital; and your first stay will be weeks long. Either you or your partner has to stay with your ill child while the other is at home with your youngest. Travel-related expenses, including meals and accommodations, increased daycare costs and the realization that one of you won’t be able to go back to work for what will likely be a long time. Ugh. Of course you don’t think much about finances at the start. You are focused on keeping everything together and making sure your ill child will survive. But slowly the costs become apparent. The credit card bills roll in. So much for managing.
This is a common storyline among families of a child with cancer. Although most of the treatment is paid for by the government or private insurance, there are large costs associated with a child’s cancer care, the largest most often being a loss of nearly half the family income due to one parent leaving the workforce. This is a well-known issue among researchers. They know the financial costs in the early part of the diagnosis and treatment are huge. But what researchers haven’t figured out is how families do in the long term. What is the financial health of the family three, five or 10 years after the diagnosis? Does this kind of health crisis turn into a chronic financial condition for the family? Does the family ever recover financially?
New research by POGO is linking data from its cancer registry (POGONIS) to copies of Canadian tax returns stored at Statistics Canada. Families who experience a diagnosis of childhood cancer are being compared to families who do not experience cancer and are similar in age to the parents, in number and age of the children, where they live and income at the time of diagnosis. The researchers can then follow both family types over time and compare what likely ‘could’ have happened to the cancer family financially to what did happen.
This research is ongoing—the comparison families are now being identified—but so far we can see that a child’s cancer diagnosis stalls household income growth for about a year after the diagnosis, after which household income continues to climb. Of more interest is that families whose child dies after the diagnosis start their family life with lower household income compared to families with children that survive, after which the household income follows the same pattern of income growth. More on this story is yet to come, as this research will also examine the financial impact of the difference in cancer type. Stay tuned!
Dr. Jason Pole is the Principal Investigator on the study Long-term Economic Consequences of a Childhood Cancer Diagnosis. He is Senior Scientist with the Pediatric Oncology Group of Ontario; an Associate Professor in the Dalla Lana School of Public Health, University of Toronto; Adjunct Scientist with The Hospital for Sick Children Research Institute; and Adjunct Senior Scientist at ICES, Toronto. Dr. Pole has a background in epidemiology and health services research with an emphasis in the use of administrative data and complex survey instruments.
Related Resources
“Financial Hardship in Adult Survivors of Childhood Cancer,” presentation at 2018 POGO AfterCare Education Day. Download PDF
So, recently, I volunteered at my daughter’s school. We went on a field trip. During the bus ride back to school I got into a conversation with Selena’s teacher who of course knows of her past at SickKids. She mentioned to me her daughter was sick; that she had a bladder infection. She mentioned how her daughter was screaming in pain and discomfort.
