Many childhood cancer survivors attending a POGO AfterCare Clinic report that they do not have a primary care practitioner. In fact, survivors are concerned that because childhood cancer is a relatively rare disease, most primary care practitioners are unlikely to have expertise in managing the late effects of treatment.
The main purpose of POGO AfterCare Clinics is to provide follow-up care for survivors of childhood cancer to ensure appropriate monitoring of long-term and possible late effects associated with the original disease and its treatment. Most survivors are seen in POGO AfterCare Clinics only once a year. But for many, particularly those living in rural or remote communities, even once a year is a challenge.
“It is critical that every survivor of childhood cancer has a family doctor,” says Dr. Stacey Marjerrison, POGO AfterCare Program Director, McMaster Children’s Hospital. “The POGO AfterCare Clinic team is focused on the late effects of the treatment, while the family doctor is focused on all aspects of wellness. If we identify any important late effects, like heart or lung problems, we need to be able to work with the family doctor to make sure the childhood cancer survivor continues to get the best care through their lifetime.”
Following an extensive consultation, POGO, through its Childhood Cancer Care Plan: A Roadmap for Ontario 2018 – 2023, defined a strategy to engage primary care practitioners and family health teams in the care of childhood cancer survivors. Beginning in 2019, the seven POGO AfterCare Clinics began a coordinated and concerted effort to make these connections. The goal is a shared-care partnership, fostering two-way communication and support between the primary care practitioner and the survivor’s AfterCare team, with the latter providing information and education about childhood cancer and its potential late effects.
“As a childhood cancer survivor, my health care is often complex,” says Kirsten, a young adult, who attends the POGO AfterCare Clinic at Toronto’s Princess Margaret Cancer Centre, 50 kilometres from her home in Brampton, Ontario. “The long-term side effects of chemo aren’t 100% known. The POGO AfterCare Clinic team is specialized to look at the drugs that I took during my treatment and allows me to receive testing and screening that might anticipate late effects. This allows my family doctor to focus on my general health and wellbeing. Without either side of my medical team, I would not be able to ensure I’m receiving optimal care.”
To date, discussions about accepting a survivor have been completed with 88 primary care practices and are underway with another 67 across Ontario, including many serving northern, rural and remote communities.
Researchers tell us that up to 80%* of childhood cancer survivors will experience at least one or more chronic health conditions by age 45 due to treatment they received to cure their cancer. As early as the 1950s, clinicians began to see that many more children were beating cancer, but that was only half the battle. Children treated for a childhood cancer were surviving only to develop significant therapy-related health problems later in life.
With the increasing success of childhood cancer treatments, caring for the growing survivor population with their unique healthcare needs becomes even more important. From the POGO Surveillance Report, we know that as of 2014, there were an estimated 17,750 childhood cancer survivors living in Ontario. And right now, about 1 in 500 adults between the ages of 20 and 39 years is a childhood cancer survivor. As this population ages, their health care needs related to treatment late effects will rise.
In early 2001, POGO launched a network of survivorship clinics located in London, Hamilton, Toronto, Kingston and Ottawa for pediatric and adult survivors of a childhood cancer. POGO AfterCare Clinics, staffed by oncologists, nurses and allied health professionals, provide long-term follow-up care, including clinical examination for signs and symptoms of late effects, recommending tests such as an echocardiogram for possible heart problems in patients who received certain therapies, and referring survivors for breast and/or colorectal cancer screening based on clinical practice recommendations that take into account their cancer treatment history.
*Nathan PC, Agha M, Pole JD, Hodgson D et al Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer. J Cancer Surviv 2016
Childhood cancer centres and POGO Satellite Clinics across Ontario are working diligently to ensure the safety and best outcomes for children with cancer during the COVID-19 pandemic.
For children with cancer, survivors and their families, the best way to reduce the risk of COVID-19 infection is to follow the recommendations outlined by the Ontario Ministry of Health, which can be found here. If you have questions about any specific precautions for your child or yourself, contact your oncologist or nurse.
Throughout Ontario, children with a new cancer diagnosis continue to be evaluated, undergo tests and start treatment with high priority and minimal disruption. POGO Satellite Clinics remain open and are an important component of keeping patients safe and the pediatric cancer system running. The childhood cancer treating centres are taking strong action to reduce the risk for cancer patients by limiting the requirement for well patients to attend the hospital by:
This is particularly true for childhood cancer survivors who have been off treatment for several months or more.
If you attend a childhood cancer clinic, extra precautions may cause some inconvenience, for example:
It is important to recognize that these measures are taken to protect survivors, your child and other children, family members, and staff in the hospital.
Your medical team understands that this a very stressful time for children, survivors, parents and families. Please talk to your team about your questions and concerns during this time.
David Hodgson, MD, FRCPC – POGO Medical Director
Paul Gibson, MD, FRCPC – POGO Associate Medical Director
Denise Mills, MN, RN(EC), NP Pediatrics – POGO Clinical Lead, Pediatric Oncology Nursing
Click here for more COVID-19 information.
POGO is actively monitoring the Coronavirus (COVID-19) situation. We are doing our best to keep our teams healthy and informed, and to ensure continuity of our work on behalf of children with cancer, their families, survivors and the childhood cancer care system. Healthcare teams working in our partner hospitals and within POGO Satellite Clinics, POGO AfterCare Clinics and in the POGO Interlink Program are following the guidelines of their respective institutions and keeping POGO updated about any modifications to their practice. Families registered in the POGO Financial Assistance Program should continue to submit their claims as usual. While the precautionary measures being made at this time may not be convenient, we appreciate everyone’s patience, understanding and cooperation.
POGO Office Staff Now Working Remotely
In line with the advice of public health authorities in response to COVID-19, and to ensure a safe and secure environment for POGO staff, clients and partners, all POGO staff have now shifted to remote work and POGO’s office at 480 University Avenue will remain closed until further notice. Alternative arrangements will be made to replace in-person meetings. During this time, POGO staff can be reached by email. Please refer to the POGO Staff List.
POGO School and Work Transitions Program Continues to Operate
POGO Counsellors are dedicated to supporting their clients through this challenging time and The POGO School and Work Transitions Program is continuing to operate with some modifications. POGO Counsellors are available by phone or email as follows:
The need to raise funds in support of our programs and services is no less great during this challenging time. As always, it is possible to make a secure, online donation to Pediatric Oncology Group of Ontario at this link. Thank you for your consideration.
Click here for more COVID-19 information.
At 10 years old, Tyler Doloroso was diagnosed with an aggressive cancer called acute myeloid leukemia. His only chance for survival was a stem cell transplant. With no full match on the horizon, his brother Jahni (a partial match) eventually became his donor. Read the full story: How Jahni Saved His Brother’s Life.
By: Melody Doloroso
It was only five months between Tyler’s diagnosis and his last cancer treatment, but every moment during that period was so intense and foreign to anything I’d ever experienced; it actually felt like years.
When we were in the hospital, my friends and family would comment on how admirable it was that I could stay calm and strong through it all. Looking back, I really don’t know how I managed. Two years later, my anxiety is still overwhelming and at times I find it hard to cope with the normal things. For example, if my son comes home tired from school, I panic and look for other symptoms like a temperature. The thought of him going on an overnight school trip will trigger my anxiety and “what ifs”. My mind thinks of worst-case scenarios and I get overwhelmed. The post-traumatic stress is very real.
Sometimes people ask why I’m stressed—after all, Tyler is in remission and doing exceptionally well. I can’t explain it except to say that when your child is diagnosed with cancer, your body and mind go into survival mode; you have no other choice. I did what I needed to do to get through it one day at a time. I wasn’t able to fully process everything that was happening at the time, so I guess this is what I’m doing now—processing it.
Tyler has crossed many milestones which I’m grateful for, but there are days when I dwell on uncertainty. Vivid memories randomly pop up when I do normal things, like run errands or when I’m driving. Some good, some not so good. Sometimes memories make me cry. When I have these days, I can get sad, irritable or worried. It’s a unique thing to go through, to say the least, but talking through it with other cancer moms who can relate is very helpful.
Perhaps I’ll feel better when he hits the third-year remission mark, or fourth, or fifth—I don’t know. For now, if I’m feeling crappy, I won’t suppress it. I acknowledge that I’m still healing and let myself feel my way through my emotions one day at a time.
Tyler was diagnosed with acute myeloid leukemia (AML) in 2017. AML is characterized by the replacement of normal blood cell production in the bone marrow with aggressively growing cancer cells. Upon any childhood cancer diagnosis at one of Ontario’s five hospitals with specialized pediatric cancer programs, each family is assigned a POGO Interlink Nurse to help them navigate the complexities of the healthcare system and access resources, including POGO’s financial assistance to families.
By: Melody Doloroso
In September 2017, my 10-year old son Tyler started “showing symptoms” as they say in the healthcare system. At first, he was lethargic; he didn’t want to go out for recess, which is odd because that is his favourite time of day! We were rookies then—childhood cancer was not part of our vocabulary—so I thought he was just being lazy. Then just before Halloween we went to Great Wolf Lodge. He sat shivering and his lips were pale. I looked up the symptoms and it seemed like he might be anemic, so I called the doctor to ask to get his blood work done.
On Friday, November 10, he had his blood drawn in the morning and then we all carried on like it was a regular day. At 9:30 at night our doctor called. She said, “Melody, I need you to take Tyler to SickKids emergency right now—don’t go to any other hospital. Get a pen and paper; I want you to write this down.” She had me write down words like hemoglobin, white blood cell count, blasts and a bunch of numbers. All of this was foreign to me at the time. Then she said, “Give that piece of paper to reception as soon as you get there, but you need to go right now.” She didn’t tell me what she suspected; she wanted me to be able to drive.
I am a single mom but my parents live with us. So while my mom stayed with my other son Jahni, my dad came with Tyler and me to the hospital. It didn’t take very long before we heard the word “cancer.” After a while, a different doctor came in to give us more information and she used kid-friendly language. She said, “Tyler, I looked at your cells myself under a microscope and I don’t see anything alarming. Next we have to find out what kind of leukemia you have so we can figure out how to treat you, but you are in the right place.” Then we were wheeled up to the eighth floor and we didn’t leave the hospital for over a month.
When I looked up the survival rates for the different types of leukemia, I was praying it wasn’t AML. The diagnosis came back, it was AML and they wanted to test for a certain gene mutation which would affect his response rate to treatment. We kept our fingers crossed that he didn’t have the mutation, but he did. They told me that chemo alone wasn’t going to cure Tyler and that his best chance for survival was a bone marrow transplant. They tested all of us in the immediate family and none of us were a full match. Next step was to tap into Canadian Blood Services, but the problem is there are not a lot of donors with a similar ethnic makeup.
Jahni visited us every day in the hospital. Until Tyler’s diagnosis, we had never been apart. Every time one of my family members came to get Jahni, he would cry uncontrollably as he watched us through the glass elevators until he couldn’t see us anymore. Eventually the hospital let him stay overnight—they figured the boys came as a package.
Then, right before leaving on her Christmas holiday, Tyler’s doctor told us they were going to go with Jahni as the stem cell donor. She said, “He’s a half match and we are good with that.” And just like that, for the first time in two months, there was hope.
From beginning to end, it was only five months, which is a blip really, but it felt like a lifetime.
This story was featured in POGO’s 2019 Community Impact Report.
At the time, I didn’t know all the things that could go wrong for my brother, I just knew that this is what he needed. It feels good to save someone’s life. If I had to give advice to someone who is thinking about becoming a stem cell donor, I would say, “It doesn’t hurt, and it feels good to help someone.” – Jahni Doloroso