Student Perspectives on the 2016 POGO Symposium
The 2016 POGO Symposium on Childhood Cancer examined clinical and scientific advances in the diagnosis and treatment of leukemia in children and adolescents. This professional education event attracted an exceptional roster of internationally renowned childhood cancer healthcare practitioners to present on this topic, and scores of delegates—practising and emerging professionals alike. Among the latter were seven undergraduate and post-graduate students who attended on bursaries and subsequently shared their learnings and inspirations from this year’s event.
Here are excerpts from their recaps.
Networking at the POGO Symposium
“As I begin my graduate career, the opportunity to speak with scientists, nurses and allied health professionals in the field was incredibly helpful. I was informed of the variety of specializations I could follow, was given advice for career development, and started a network of connections to work with. Learning more about current research, and speaking to experts who share similar passions for their work, was incredibly inspiring! I left the Symposium feeling motivated in my work and connected to an amazing community of equally passionate healthcare professionals!”
-Jacqueline van Warmerdam, MSc Candidate, The Hospital for Sick Children & The University of Toronto
“Throughout my experience at the POGO Symposium, I was able to meet other nursing students, nurses, nurse educators and nurse managers. I was fortunate enough to sit at a table with a few oncology/haematology nurses that currently work at SickKids and was able to ask a lot of questions about their experience. I am excited to learn more as I pursue a career as a pediatric oncology nurse and look forward to future POGO Symposiums."
-Mackenzie Heath, Bachelor of Science in Nursing, Year 4, Western University
“This conference provided me with the opportunity to network with nurses who work on the unit which I aspire to work on, as well as be introduced to the unit manager of the unit which I hope to work on upon graduation. This conference provided incredible networking opportunities as a student nurse, and I was able to learn from my future RN colleagues and gain their insight into the coming months leading into my career.”
-Kealey Clarke, Collaborative Bachelor of Science in Nursing Program, Year 4, Western University/Fanshawe College
The Multifaceted Field of Pediatric Oncology
“Although leukemia brings many challenges, the conference emphasized the successes and acknowledged how far the field has come in terms of cure rate which was amazing to learn about. Dr. Nina Kadan-Lottick gave a wonderful talk on managing behavioural treatments that are observed during treatment. She emphasized the importance of quality of life and how this includes mental health. She talked a lot about providing psychosocial support and how there are upcoming interventions that are used to help provide that support to youth who may be experiencing anxiety. Dr. Sharon Guger discussed how leukemia is having impacts on attention, memory and learning and how this can impact quality of life post treatment. Another major area of focus was on future research and future targets for leukemia treatment. One talk that stood out the most was Dr. Stephan Grupp who discussed CAR-T Cell Therapy. This talk was full of innovation and demonstrated the future direction of leukemia treatment. Overall, the Symposium provided an educational, interesting and innovative series of talks that really impacted my knowledge and education surrounding the topic. I always love how the Symposium has a variety of speakers that cover many different perspectives. It shows the multidisciplinary approach to pediatric oncology and makes the field so unique.”
-Nini Nguyen, Bachelor of Health Sciences (BHSc), Child Health Specialization, McMaster University
“I specifically enjoyed the sessions on the psychosocial aspects of cancer treatment, with an emphasis on the family. The discussion on sleep habits during treatment of both parents and the patient was of particular interest to me. I also enjoyed the session on managing behaviour changes during treatment. I felt empowered by the specific nursing interventions that were suggested with respect to post-treatment distress in families undergoing childhood cancer treatment. This helped solidify one of the main messages I took away from the conference which was the quality of the cure…I feel very fortunate for this opportunity and look forward to attending the Symposium as a registered nurse next year.”
-Lisa Delanghe, Bachelor of Science in Nursing, Year 4, University of Windsor
“The presentations taught me a lot about where we stand in the fight against childhood cancer. In particular, I found the opening talk by Dr. Sallan to be an engaging and informative start to the conference; this talk was the best way for someone without a lot of leukemia expertise to be quickly updated and set up for the other talks. I learned a lot about precision medicine which inspires me in my future goals to combine clinical practice with molecular research. Dr. Nathan’s talk on the late effects of childhood leukemia really helped me to understand the unique nature of childhood cancers and to comprehend the importance of reduction therapy and survivor care. The poster sessions were very helpful as I had the chance to share my summer research with healthcare professionals, receive their input and hone my presentation skills…I even got to see the results of studies I myself had participated in.”
-Hayley Insull, Bachelor of Science in Biochemistry, Year 2, McGill University
“Without a doubt, the highlight of the weekend was being able to learn, first-hand, from world experts in the field of oncology. As someone who aspires to be a pediatric oncologist, it was so motivating to hear the journeys of these physicians and experts. It was especially inspiring to know that some of them have been witness to and participants in the immense strides that have been made in pediatric oncology (such as the increased survival rate in ALL), and humbling to hear that they still felt that they needed to do so much more.”
-Meghna Dua, Pediatrics Resident, Year 2, Western University
Knowledge Translation through Poster Presentations
“The posters were also an enjoyable part of the Symposium. It was fantastic being able to engage with students and supervisors through visual representations of their work. I was able to ask critical questions that deepened my understanding of their work but also helped to inform my own research questions and methodology. I hope to present a poster at next year’s Symposium and so I also took note of differences in layout and design of the posters.”
-Ashna Khanna, MSc Candidate, Clinical Research, Institute for Medical Science, University of Toronto
“Presenting at POGO was a great learning experience. As an undergraduate student, it was a phenomenal opportunity to practice my presenting skills and present on a project that I am passionate about. I was able to practice speaking in a professional manner with my target audience being informed healthcare professionals. I was able to disseminate knowledge regarding the iPeer2Peer Oncology project that I have been actively involved in and was able to connect some nurses with the principal investigator to potentially enrol current oncology patients at SickKids with a mentor in the iPeer2Peer program. I felt that this opportunity was a great knowledge translation experience and overall a great learning opportunity as an up and coming health professional and researcher.
-Carley Ouellette, Bachelor of Science in Nursing, Year 4, Western University.
Your baby has cancer
These four words are forever unforgettable. On May 26, 2015, my wife, Christine, and I had taken our 18-month-old daughter, Charlotte, to see a pediatrician at Grand River Hospital near our home. She was not herself—low energy and very pale. This was the third doctor’s visit that week and we were determined not to leave without answers. After a full morning of tests, Charlotte was diagnosed with acute lymphoblastic leukemia (ALL). We were brought to our knees. Shocked and scared, we learned her hemoglobin was at the dangerous level of 33 and we were rushed to Children’s Hospital in London for an emergency blood transfusion and the start of our cancer journey.
The next 16 days were filled with more transfusions, a surgery to implant her port, various procedures and the start of chemotherapy. We were introduced to doctors and nurses whom we’ve now come to think of as family, and we have learned as much as we could about this type of cancer and its treatment. The days were filled with procedures and the nights were mostly sleepless. It was an extremely difficult time but the silver lining was the care and respect we felt from every member of our medical team. As scared as we were, they gave us the strength to get through those days together as a family. We learned Charlotte’s treatment would span nearly two and a half years. It was at that point we decided Christine would leave her career to care for Charlotte full time. In a blink of an eye our lives turned upside down. We were terrified on many levels but we became quickly resigned to the start of this journey.
When it came time to be discharged, we were asked to stay in London to be close to the hospital until Charlotte had completed the induction stage of treatment. Leaving the security of the hospital was scary for us. We would no longer have a nurse on call to help answer questions or problem-solve at any time of the day or night.
On our last day we met Julie Dowler, our nurse case manager. Immediately we took to her kind and compassionate nature. Christine remembers their first email exchange that day. Julie told her, “Now we are family,” and she meant it. To this day, we still feel like we are her only patients. It was her support and reassurance that gave us the confidence to take the next step and leave the hospital that day.
While staying at my in-law’s home those next two weeks, we had a visit from Margaret Warden, our POGO Interlink Nurse. She helped to educate us further on leukemia as well as the role POGO would play in our lives. We learned about the generous POGO financial assistance available for childcare, food and accommodations, as well as information on the POGO Satellite Clinics. My wife and I had so many questions about what we could expect in the coming months and Margaret took her time to answer every one. Having her undivided attention in our home was comforting and we felt even more secure about Charlotte’s care.
We were counting down the minutes to the end of the induction phase. Charlotte had the full effects of the steroid treatment and in just a month our baby girl became almost unrecognizable. She was still only a baby and not able to communicate her needs or feelings. I remember she would clap her hands in frustration to get our attention. It was completely heartbreaking for our family.
At the end of induction, we were given permission to go home to Cambridge. Once home and settled, we started visiting the POGO Satellite Clinic at Grand River Hospital. It was such a relief to be able to get some of Charlotte’s treatments in our community. It meant I could go back to work and we could feel our lives starting to return somewhat to normal. Patti Bambury, our Satellite Nurse Coordinator, and one of Charlotte’s favourite people, takes great care of us. I’ve been impressed with the way the POGO Satellite Clinic communicates with our team at Children’s Hospital. We’ve never felt a disconnect in Charlotte’s care. Another thing we appreciate about Grand River Hospital is its small size. There are rarely more than a few families there for treatment at the same time so it tends to be a relaxed atmosphere. Christine and I have found comfort in connecting with the other parents while our children enjoy the play area. With only three main nurses, whom we’ve come to know very well, it feels very much like a family and this has gone a long way to improving Charlotte’s anxiety at clinic visits.
POGO opens 8th Satellite Clinic to Support Families in Peterborough area
Like all families on this journey, we’ve had our challenges to overcome. Charlotte’s first port developed a blood clot and she had to endure three months of twice daily blood thinner injections. Two other port surgeries and a PICC line were to follow. On top of this, there was a period of time where she would spit out her medication and we would have to practically hold her down to get her to take it. The worry and stress this cancer has caused in our lives has been insurmountable. My wife and I have both gone through our own stages of anxiety and depression at different times.
Trying to remain strong for Charlotte has been one of the hardest things I’ve ever had to do.
Now that we are nearly a year and a half into Charlotte’s treatment, we have learned how resilient and inspiring children are. Even on the bad days, there is always laughter. The life lessons I’ve learned from my two-year-old will carry me through the rest of my life.
Thank you POGO for your support, your financial assistance and for setting up the Satellite Clinics so families like mine can live more normal lives while still getting the care our children need.
Mike Anstead is the proud father of Charlotte.
"Charlotte turned 5 years old in November 2018 and is thriving in Kindergarten! Every medical follow up appointment finds her stronger and stronger and we are at the point where living with cancer is no longer a part of our daily lives. Life is wonderful, once again!"
- Mom Christine Sarlius, December 2018
Related Resources
Read The Childhood Cancer Care Plan to see how POGO is planning long-term to care for children like Charlotte.
Review The POGO Surveillance Report for the most recent 5-year data on trends in childhood cancer in Ontario.
Check out the presentations from Leukemia: Successes, Advances, Challenges, the theme of POGO's 2016 Annual Multi-Disciplinary Symposium on Childhood Cancer.
In Conversation with Dr. Paul Gibson
As POGO's Associate Medical Director, Dr. Gibson provides oversight for POGO’s seven Satellite Clinics including clinical practice and professional development training. He also chairs POGO’s Technology and Therapeutic Advisory Committee (TAC) that works to ensure timely and equitable access to state-of-the-art cancer treatment to all children in Ontario. Dr. Gibson was a member of the executive committee of the Provincial Pediatric Oncology Plan (PPOP), POGO’s long-range plan for childhood cancer care in Ontario. He is also a pediatric oncologist, and recently joined the team at McMaster Children's Hospital in Hamilton. He is also an Associate Professor of Pediatrics at McMaster University.
Q. What does Childhood Cancer Awareness Month (CCAM) mean for you?
Dr. Gibson: September is a time to celebrate collaboration. It’s a time to acknowledge the team efforts that lead to the remarkable outcomes in children’s cancer. It’s the families, the doctors, the nurses, the child life specialists, pharmacists, rehabilitation professionals, information coordinators, volunteers, tertiary hospitals and satellite centres. The saying is that it takes a village to raise a child. Well, it takes a province to care for families impacted by childhood cancer.
Q. What led you to pediatric oncology?
Dr. Gibson: As an undergraduate student, I worked as a counsellor at a variety of summer camps for kids with special needs and interacted with pediatric oncology patients and the dedicated professionals caring for them. It was here that my interest in oncology was sparked. I spent two summers in Alberta where I had the pleasure of working with Kids Cancer Camps of Alberta. Once in medical school, I was fortunate enough to be granted a studentship to spend the summer working with the pediatric oncology team at the Children’s Hospital of Eastern Ontario (CHEO). My experience there cemented my goal to become part of this world. I was fortunate to train in pediatric oncology at SickKids and then spend 10 amazing years working as part of the team at Children’s Hospital in London.
Q. What aspects of your work bring you the greatest joy, challenge or sadness?
Dr. Gibson: When I tell people I work in childhood cancer, their first response tends to be, ‘It must be so sad.’ I always explain that while the bad days can be awful, the vast majority of days are filled with laughter, levity and team work. Day to day we see our patients enjoying the moment, playing with their families, nurses, child life specialists, therapeutic clowns and volunteers. The biggest challenge still lies in the fact that we don’t cure every patient. Our team is profoundly impacted by challenges such as relapses and patients we can’t cure. It’s important for us to lean on each other in those hard times.
Q. When and why did you become involved with POGO?
Dr. Gibson: I first became involved with POGO as a trainee at SickKids. I participated in the annual POGO symposiums and enjoyed being part of the collective provincial community. I also had the chance to be a presenter during the Satellite Education Days and learn more about the communities served. When I joined the team in London in 2010, I came to appreciate the important job POGO plays in ensuring excellence and equity in kids’ cancer care throughout the province. POGO not only serves as the official advisor to the Ministry of Health, but also an important facilitator of collaboration and cooperation between professionals caring for children with cancer throughout Ontario.
Q. What mark do you want to make as POGO’s Associate Medical Director and as an oncologist?
Dr. Gibson: POGO’s successes over the past 30+ years have been built on the backs of dedicated volunteers and leaders. As the Associate Medical Director, I wish to make my mark by not only continuing the programs, relationships and advocacy of the past, but also to play a role in helping to usher in new therapies and technologies to improve childhood cancer outcomes for all patients in Ontario.
Q. If you could say one thing to the families and children in your career, what would that be?
Dr. Gibson: I would say, “Thank you!” It’s an incredible privilege to be ‘let in’ to their family dynamic at a time most would say is their worst. Not only do families allow us to work with them and care for their child, but so many also participate in research and clinical trials knowing that the knowledge we gain may never impact their child, but may improve the care and outcomes of countless children in the future.
Q. What would be your call to action to Ontarians for CCAM?
Dr. Gibson: Ontarians must make childhood cancer research a priority. While more children survive childhood cancer now than ever before, too many young lives are still lost every year. We must ensure Ontario children have access to clinical trials that will aim to improve outcomes and minimize long-term complications. We must also ensure that we take our best efforts to care for those who survive but are left with immense health challenges and also those who will not be cured and deserve the same world- class care at the end of life.
Dr. Gibson graduated medical school from Queen’s University, Kingston, Ontario, in 2004 and started training in pediatrics at BC Children’s Hospital. He has practiced pediatric hematology and oncology exclusively since starting his subspecialty training at Sick Kids in 2007.
Dr. Gibson served as Physician Lead for the creation and implementation of a variety of computerized provider order entry efforts in Southwestern Ontario, both within and beyond oncology. He has participated in a variety of research endeavours aimed at improving symptoms and quality of life in children and adolescents undergoing cancer therapy.
Dr. Gibson is an avid sports and music fan and when he’s off duty attends Blue Jays’ and Toronto Leafs’ games, and supports independent musicians and festivals.
A Lifetime of Care for My Lifetime in Care
At four, I was diagnosed with stage 4 rhabdomyosarcoma, in my case a tumour the size of a baseball in the lower abdominal area near my bladder. At 20, I have lived almost my entire lifetime in cancer care. And alongside my parents, POGO, through its many programs and services, has been with me every step of the way. POGO teams have supported me through treatment, which included eight rounds of chemotherapy and a series of surgeries at the age of four. And now, 16 years later, as I manage the late effects that have developed as a result of my treatment, POGO AfterCare Clinics continue to support me.
Most people know that cancer treatment can be fairly aggressive, but what many don’t realize is that it can have serious side effects many years later. I continue to be monitored by oncology for second cancers. I need to see a cardiologist every six months because the toxic mix of drugs I was given has the potential to seriously lower my Ejection Fraction Index, which is the fraction of blood pumped out with every heartbeat. And I visit my internist annually because the surgeries that removed my tumour, also left a lot of scar tissue.
Until a few years ago, all of my follow-up care took place at SickKids where I was diagnosed and treated. When I turned 18, I graduated from the all-encompassing children’s hospital system, with its seamless management and coordination between departments, to the adult system (in most situations I am by far the youngest person in the waiting room!). While I have three new doctors spread across the city, luckily for me, and every childhood cancer survivor in Ontario, all of my follow-up care is still coordinated through a POGO AfterCare Clinic. So when my cardiologist wanted to change my medication, POGO teams were able to determine that it wouldn’t do any damage based on the treatment I had as a child. And when my internist wanted to do an exploratory procedure, POGO teams again intervened noting it could do more damage than good with the scar tissue that was built up over many surgeries.
As you can see from my personal story, childhood cancer requires a lifetime of follow-up care. I know POGO will be there for me over the next 20 years, 20 more after that and counting. Without the seamless care of POGO’s AfterCare Clinics, and survivor care programs, many young cancer survivors would fall through the cracks.
Eloise's Story
My name is Eloise McIntosh. I am 16 years old and two years ago, over the summer between grade 9 and grade 10, I was diagnosed with stage IIb Hodgkin lymphoma.
It started when I was on a youth adventure trip in Hawaii. Three weeks in, I got sick on a 12-mile hike to our camping destination. When I was still sick a week later, the doctors in Toronto tested for infectious diseases and the mono virus. I also had a chest x-ray to test for pneumonia. That is when they discovered it: a mass in my esophagus right near my trachea.
There are all kinds of terrifying things about getting a childhood cancer diagnosis. I had never even spent time in a hospital before and I had to have surgery right away. Chemotherapy was the worst experience of my life. They put me on steroids which caused my face to get fat and I felt angry all of the time. And when they told me that I would have to meet with a fertility specialist, that definitely freaked me out.
But there are also the trials and tribulations that come with being 14 years old. I was worried about my social life and missing out on my high school experience. As a teenage girl, the thought of losing my hair was obviously a huge concern for me. In fact, I did lose all of my hair... and my eyebrows and eyelashes. My leg hair completely fell out. I felt naked and unprotected. My wig became, and still is, part of my ability to feel somewhat normal, but probably the biggest contributor to my emotional well-being was how supported I was by my friends and family.
Both my parents and my younger brother and sister were around me all of the time. My aunts, uncles and cousins visited often and they became “my posse.” And at least one of my friends from school was with me during every chemotherapy treatment. I never felt alone and I realize how lucky I was. Many families need to travel for treatment—to Toronto, Ottawa or one of the five big cities with a major children’s hospital. I saw lots of kids in treatment with just one parent sitting beside them while the other was far away. Young kids and teenagers separated from their friends and siblings. I’m sure it was a very isolating experience for them.
That is why I agreed to be the keynote speaker at the upcoming POGO gala to benefit kids with cancer. Funds raised will support POGO’s mission to ensure all children with cancer, and their families, have equal access to the best care—no matter where in Ontario they live.
I hope to meet you all at the event on May 7th, taking place at the Liberty Grand Entertainment Complex in Toronto (you can find out more here: www.pogo.ca/gala). If you cannot make it, I hope you will consider showing your support by making a donation to my campaign to support families.
Thank you so much!
Sincerely,
Eloise
Eloise McIntosh made this speech at the POGO Gala in 2016. She is now the co-founder of The Good Hood Club, a loungewear company dedicated to championing childhood cancer, most notably through donating 50% of its profits to pediatric oncology initiatives.
Government of Canada increases duration of Employment Insurance compassionate care benefit
Excerpted from Government of Canada Press Release
The Minister also said today that the Government will work towards providing more generous leave for caregivers in the future. The Government has committed to making the compassionate care benefit more flexible, easier to access and more inclusive, she said.
Compassionate care benefits provide temporary income support to eligible individuals who must be away from work to provide care for a gravely ill family member at risk of death.
Effective January 3, 2016, the enhanced benefit, announced in 2015, allows claimants to collect up to 26 weeks of benefits, up from the current 6 weeks. Further, the period during which benefits can be taken is expanded to 52 weeks (up from 26 weeks). Benefits can be shared between family members.
Eligibility for compassionate care benefits remains the same, including the requirement for a medical certificate signed by a doctor attesting to the family member’s condition.
Corresponding changes to the Canada Labour Code will come into force at the same time to ensure that the jobs of employees in federally regulated enterprises remain protected while they avail themselves of compassionate care benefits under the EI program.
Related Topics
- Learn about the financial assistance POGO provides to families
- Visit Service Canada to get the most up to date information about Employment Insurance compassionate care benefits
Ontario Making Hospital Parking More Affordable
Ontario hospital parking discounts came into effect October 1, 2016!
On January 18, 2016 Ontario's Ministry of Health and Long-Term Care issued the following press release:
As of October 1, 2016, hospitals that charge more than $10 a day for parking will be required to provide 5-, 10- and 30-day passes that are:
- Discounted by 50 per cent off their daily rate
- Transferable between patients and caregivers
- Equipped with in-and-out privileges throughout a 24-hour period
- Good for one year from the date of purchase.
Ontario consulted with patients, patient advocacy groups, hospitals and the Ontario Hospital Association to find a fair plan that reduces the financial burden of parking fees for patients and their visitors.
Between now and October 1, 2016, hospitals will work directly with their Patient and Family Advisory Councils to implement this new policy, ensuring that it is well promoted and easy to understand. Each hospital will provide details on its specific parking policy and discounts.
Approximately 900,000 patients and visitors - including 135,000 seniors - are expected to benefit from reduced parking fees each year.
Saving patients and their loved ones money on hospital parking is part of the government's plan to build a better Ontario through its Patients First: Action Plan for Health Care, which is providing patients with faster access to the right care, better home and community care, the information they need to stay healthy and a health care system that's sustainable for generations to come.
" Parking fees should never be a barrier for patients when they go to the hospital. With today’s announcement, we are providing relief from the high cost of parking at some hospitals in Ontario. By making parking more affordable for patients and their loved ones who visit the hospital often, we are helping to reduce the burden of parking fees and putting patients first."
- Dr. Eric Hoskins, Minister of Health and Long-Term Care
" We are thrilled that our concerns around the high cost of hospital parking have been addressed in a meaningful way that will help defray the cost of hospital parking for families of children with cancer in Ontario. You heard our voices, included us in the consultation, and have come up with a plan that reflects that in a very positive way. Thank you."
- Susan Kuczynski, Member of Ontario Parents Advocating for Children with Cancer
QUICK FACTS
- The Ministry was pleased to have consulted with a number of hospitals and the Ontario Hospital Association in regards to parking fee changes in Fall 2015
- The Ministry will require other hospitals that do not own their own lots to make best efforts to influence their partners, like municipalities and private operators to cap or cut parking fees for those who must visit the hospital frequently.
- In Ontario 45 Hospitals currently offer free parking and 54 charge $10 or less per day. It is estimated that 36 hospitals charge more than $10 a day.
- The government is directing hospitals not to raise their daily parking rates for the next three years starting today.
RELATED LINKS
- POGO Financial Assistance Program
- "Rates Cut in Half for Frequent Hospital Visitors" Ontario Government Press Release, Oct. 3, 2016
- Ontario Ministry of Health: Patients First: Action Plan for Health Care
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.
POGO Research Education Days Spur on Successive Generations of Pediatric Oncology Researchers
POGO’s 2016 Research Education Day provides graduate students, post-doctoral fellows, clinical fellows and new investigators with the opportunity to gain practical skills and advice to build a research career in pediatric oncology. Topics at this one-day event include: how to build a strong research team and work through the associated challenges; work-life balance; inter-disciplinary insights into applied research; and how to become a leader in the field. In a panel discussion on mentorship, researchers will share their experiences first as mentees and later as mentors. Participants can also attend two workshops: To the top of the Pile: Writing a Stand Out Grant Application and What’s Hot and What’s Passé in Pediatric Oncology Research.
POGO provides continuing education that enables healthcare professionals to remain at the forefront of the ever- and rapidly advancing field of pediatric oncology.
The 2016 POGO Research Education Day takes place Wednesday, April 13, 8:00 a.m. – 4:30 p.m. at St. James Cathedral, 54 Church St, Toronto. Get the details!
To subscribe to the POGO Research Unit distribution list contact Rachelle Marek: rmarek@pogo.ca.
2015 POGO/Ooch Survivor Conference
On October 16-18, 2015, Camp Oochigeas and POGO presented the 3rd Life After Childhood Cancer Survivor Conference, a gathering for survivors of childhood cancer aged 19 and over. More than 70 adult survivors of childhood cancer joined us at Camp Oochigeas in beautiful Muskoka for a weekend of connecting with other survivors, learning about managing their health and living well after childhood cancer.
Scroll down to view the Survivor Conference slide presentations that POGO was granted permission to share. If you are interested in a specific subject, click on a subject tag at the bottom of a post to view all the slides or videos that cover that subject.
NOTE: The content of each presentation captures the unedited information and opinions presented by the speaker. Please note that the information contained in the presentations was current at the time it was presented – there may be further information in subsequent literature. Listed speaker credentials were current at the time of presentation.
PLENARY SESSIONS
We Are All Storytellers: Discovering the Power of Knowing and Sharing Your Story
Michael Lang, MSc
Raymund Ong
Managing Your Fertility: Current Options, Practical Strategies
Sara R. Cohen, LL.B.
Karen Glass, MD, FRCS(C), FACOG
All in the Family: Talking to Siblings about Childhood Cancer
Norma D’Agostino, Ph.D., C.Psych.
Shamata, sibling of childhood cancer survivor
Kevin Wang, MD/PhD student
Beyond Survival: Emotional Equilibrium After Cancer
Christopher Recklitis, Ph.D., MPH
WORKSHOPS
Communicating with Family and Friends
Norma D’Agostino, Ph.D., C.Psych.
Common Workplace Issues: Tools and Strategies
Lori Otte, BA, RRP
Genetic Testing for Cancer Survivors – Who and When
Nikki Parkinson, MSc, CGC
