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
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.
Life After Childhood Cancer – A Conference for Survivors
From setting life goals and dealing with the long-term health effects of treatment, to telling a new love interest about their experience with cancer, survivors of childhood cancer may struggle with many issues.
From October 16 – 18, 2015, POGO and Camp Oochigeas will present Life After Childhood Cancer, the third POGO survivor conference to address key issues survivors themselves have identified as being important to their health and well-being.
Matthew is a proud high school graduate, a college grad and a survivor. He has ongoing physical and cognitive challenges brought on by his disease and its treatment. He has difficulty with fine motor coordination, and a hard time listening and translating that information on paper. But he is driven to succeed and perseveres. Instead of taking notes by hand, he uses a laptop. If he doesn’t understand something, Matthew has no problem asking for help or researching until he figures it out. Matthew will attend the survivor conference for the first time this year.
“I’m looking forward to the survivor conference,” says Matthew. “I'm curious to hear from other survivors about their experiences and to share mine.”
In past years survivors of all ages have attended the conference and say it has helped them to better answer questions from others who have not experienced cancer.
“The conference aims to address educational and information needs in the context of social and recreational interaction – a combination we have found addresses survivors’ needs in a unique fashion, directly applicable to their daily life,” says Dr. Mark Greenberg, Senior Adviser, Policy & Clinical Affairs at POGO.
Practical approaches to their issues, like fertility and the disease’s impact on their families, are presented by leading experts, and also by other survivors. Survivors leave the conference knowing what questions to ask of their family doctor, who may never see another survivor in their practice.
“I’m happy that some sessions are run by other cancer survivors because it’s good to know I’m not the only one going through this,” says a past conference participant.
As for Matthew, his list of questions is building.
“I'm very interested to see what I can learn that will help me in the future,” he says.
While no one wants to think about cancer after they have beaten it, the thought of attending Life After Childhood Cancer would be one that is not wasted.
Get details about the 2015 Ooch/POGO Survivor Conference.
PBS Cancer Documentary, Part 3
Wednesday's episode: 6-year old Emily has leukemia and Doug Rogers, a 60-year-old NASCAR mechanic with melanoma. Each is a pioneer in new immunotherapy treatments. Both see their advanced cancers recede and are able to resume normal lives.
This episode picks up the story at another moment of buoyant optimism in the cancer world: Scientists believe they have cracked the essential mystery of the malignant cell and the first targeted therapies have been developed, with the promise of many more to follow. But very quickly cancer reveals new layers of complexity and a formidable array of unforeseen defenses. In the disappointment that follows, many call for a new focus on prevention and early detection as the most promising fronts in the war on cancer. But other scientists are undeterred, and by the second decade of the 2000s their work pays off. The bewildering complexity of the cancer cell, so recently considered unassailable, yields to a more ordered picture, revealing new vulnerabilities and avenues of attack. Perhaps most exciting of all is the prospect of harnessing the human immune system to defeat cancer.
Tune in to Cancer: The Emperor of All Maladies, 3-part documentary
Airing on PBS, 9 - 11 p.m. (Check your local listings)
Monday, March 30 - Magic Bullets
Tuesday, March 31 - The Blind Men and the Elephant
Wednesday, April 1 - Finding the Achilles Heel
This three-part film tells the comprehensive story of cancer, from its first documented appearances to the modern-day fight for a cure. Based on the Pulitzer Prize-winning book by Siddhartha Mukherjee, Ken Burns' film weaves together a captivating historical narrative with intimate stories about contemporary patients, and an investigation into the latest scientific breakthroughs that may bring a cure within reach.
Learn more at www.pbs.org.
Purchase the series at www.shoppbs.org.
Watch Katie Couric interview Mukherjee and Burns on Yahoo News.
PBS Cancer Documentary, Part 2
Tuesday's episode: The story of Dr. Lori Wilson, a surgical oncologist diagnosed with invasive breast cancer in both breasts in 2013. Her emotional and physical struggles with the disease provide a bracing counterpoint to the historical narrative that picks up in the wake of the declaration of a “war on cancer” by Richard Nixon in 1971. Flush with optimism and awash with federal dollars, the cancer field plunges forward in search of a cure. In the lab, rapid progress is made in understanding the essential nature of the cancer cell, leading to the revolutionary discovery of the genetic basis of cancer. But at the bedside, where patients are treated, few new therapies become available, and a sense of disillusionment takes hold, leading some patients and doctors to take desperate measures. It is not until the late 1990s that the advances in research begin to translate into more precise targeted therapies with the breakthrough drugs Gleevec and Herceptin.
Tune in to Cancer: The Emperor of All Maladies, 3-part documentary
Airing on PBS, 9 - 11 p.m. (Check your local listings)
Monday, March 30 - Magic Bullets
Tuesday, March 31 - The Blind Men and the Elephant
Wednesday, April 1 - Finding the Achilles Heel
This three-part film tells the comprehensive story of cancer, from its first documented appearances to the modern-day fight for a cure. Based on the Pulitzer Prize-winning book by Siddhartha Mukherjee, Ken Burns' film weaves together a captivating historical narrative with intimate stories about contemporary patients, and an investigation into the latest scientific breakthroughs that may bring a cure within reach.
Learn more at www.pbs.org.
Purchase the series at www.shoppbs.org.
Watch Katie Couric interview Mukherjee and Burns on Yahoo News.
PBS Cancer Documentary, Part 1
Monday's episode: The search for a cure plus, little Olivia Blair who, at 14 months, was diagnosed with T-cell acute lymphoblastic leukemia, which spreads to her brain and spinal column. The film follows her as she and her parents struggle with the many hardships and decisions foisted upon a cancer patient. She remains in full remission a year after her diagnosis, but is still on her journey to finish her three-year treatment plan. Also featured: Sidney Farber, who, defying conventional wisdom in the late 1940s, introduces the modern era of chemotherapy, and his full-scale national “war on cancer.”
Tune in to Cancer: The Emperor of All Maladies, 3-part documentary
Airing on PBS, 9 - 11 p.m. (Check your local listings)
Monday, March 30 - Magic Bullets
Tuesday, March 31 - The Blind Men and the Elephant
Wednesday, April 1 - Finding the Achilles Heel
This three-part film tells the comprehensive story of cancer, from its first documented appearances to the modern-day fight for a cure. Based on the Pulitzer Prize-winning book by Siddhartha Mukherjee, Ken Burns' film weaves together a captivating historical narrative with intimate stories about contemporary patients, and an investigation into the latest scientific breakthroughs that may bring a cure within reach.
Learn more at www.pbs.org.
Watch Katie Couric interview Mukherjee and Burns on Yahoo News.