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Family Pays it Forward with Pajamas and Pancakes Event

Posted on January 7, 2022 by admin

The Welke family put on their PJs, turned up the griddle and opened their home to the community in Stayner, Ontario, to raise funds for POGO. The event was in honour of their daughter Gwendolyn who was five years cancer-free!

POGO helped us when Gwendolyn was diagnosed with an adrenal cortical carcinoma—they provided us with financial assistance when we had to travel to Toronto, and because of the POGO Satellite Clinic in Orillia (Soldiers’ Memorial Hospital), we were able to stay closer to home for some of her treatment. Without the Clinic and financial support, I don’t know how we would have made it through.

When we received the notice in the mail about Pajamas and Pancakes, I turned to my husband and said, “Why don’t we do a small event with our friends and family to raise money for other families going through treatment?”

Want to host your own Pajamas and Pancakes event? We’re here to help! Learn more here.

Our original goal was $1,000 and we thought even that was crazy, but things really took off. I sent print and Facebook invitations to our personal contacts and families who we met at the Orillia Clinic. When a local real estate agency heard about our event, they asked us if we wanted them to advertise for us, so we ended up opening it to the public. We offered coffee, juice, sausages, three pancakes and a topping bar full of whipped topping, chocolate chips and Skor pieces for a minimum donation of $5. We also had a silent auction with a good variety of items donated from friends and family with home businesses.

In the end, over 100 people came through the house, many who we had never met before, and we raised $3,000 for POGO families! I think it was impactful for our guests to meet parents and kids who have been through treatment and benefitted from POGO—they could see exactly where the money would be going.

Gwendolyn had an amazing time. Without fundraising like this, families would not receive the help they need during one of the most stressful times of their lives. It is important to give back. And who doesn’t like pancakes!?!

By Melissa Welke

Editor’s Note: This event took place in 2019 prior to the COVID-19 pandemic.

In Conversation with Dr. David Hodgson: A Progress Report of His First Five Years

Posted on January 7, 2022 by admin

And Looking Ahead to His Next Five as POGO Medical Director and Chair in Childhood Cancer Control

In November 2021, Dr. David Hodgson (DH) began a second five-year term as POGO Medical Director and Chair in Childhood Cancer Control at the University of Toronto. In conversation, he shares highlights of his very productive first term, 2016 – 2021.

Q: Data-driven quality improvement is one of the five goals of POGO’s Childhood Cancer Care Plan. What initiatives have you undertaken to tackle this pressing priority?

DH: Well, for POGO to drive forward improvements in the childhood cancer system, we need to listen to our clinical partners and families to understand what the needs are, help develop and improve programs that meet those needs, and measure how well we are doing in that mission.

I felt that while POGONIS and our other data holdings are among POGO’s strengths, they were underutilized. So, over the last five years, we published and made available significantly more childhood cancer data to help clinical stakeholders and researchers understand the current state of childhood cancer in Ontario.

POGONIS is POGO’s active cancer registry initiated over 30 years ago to capture diagnosis, treatment and outcome data for children treated at the five specialized childhood cancer programs in Ontario.

We’ve also taken steps to strengthen data quality by implementing automated quality checks to immediately identify possible errors.

POGO produced two provincial childhood cancer surveillance reports (2018 and 2020) making Ontario the only province to publish searchable data regarding the incidence, prevalence and outcome of childhood cancer for different childhood cancer subtypes. In 2020, we saw the first-ever inclusion of POGONIS-derived childhood cancer statistics in the Ontario Cancer Statistics report, and we contributed to the national Cancer in Young People in Canada (CYP-C) Data Tool.

For hospitals, we provided the first POGO Quality Indicators Report, which allowed them to see information such as the type of cancers they care for, wait times and clinical outcomes compared to the province as a whole.

As a result of this work, data is much more available to hospitals, system planners and researchers to undertake activities such as assessing the feasibility of conducting a research study, or understanding the provincial patterns and trends of childhood cancer so the system can be prepared for the future.

Q: What other improvements have been made to POGO’s data?

DH: We have improved the data for specific POGO programs to ensure they are serving children with cancer and survivors in the best way possible. For over 20 years POGO has managed a long-term follow-up program for survivors of childhood cancer through the POGO AfterCare Program delivered in seven clinics across Ontario. We worked with these clinics to update the data collected so that we can assess the impact that these clinics have on survivor care and inform continuous improvement.

Q: Looking ahead, what are your plans for further improvements in data-driven quality?

DH: It is important that we continually work with our clinical and research partners to ensure that we are facilitating their work. Now that we have made these changes to our data collection and reporting, we have to be sure that we are not just collecting data for its own sake. We want to be able to inform clinical programs and research that have a clear path to improving the outcome for children with cancer. This means building collaborations that enhance the clinical and policy relevance of our data.

One great example is the work that the POGO analytics team and our Technology Advisory Committee is doing with Dr. Pechlivanoglou at SickKids to facilitate access to innovative new treatments for children with cancer by developing policy advice for government. This work involves input of clinical experts, access to high-quality data and analytic expertise, and an understanding of the regulatory environment. Any one of these on its own would not be enough, but working together with our clinical and research partners across Ontario, we can make progress that would not be possible without bringing together all the pieces of the puzzle.

I would also like to increase the utility and variety of data holdings we can use and make available to others, and redesign the POGO Research Unit to better support the deliverables of our Childhood Cancer Care Plan.

Q. Survivorship is near and dear to your heart. Tell us about your future focus for the POGO AfterCare Program for childhood cancer survivors.

DH: The POGO AfterCare Program was formally established in 2001 with clinical collaboration of seven clinics throughout Ontario. Developed at a time when few survivors were receiving adequate follow-up care, the initial strategy was to recall and retain as many survivors as possible. More recently, we have worked to integrate the concept of “right care in the right place” into the model of AfterCare.

We recognize that during treatment, POGO Satellite Clinics can provide excellent care for selected patients and problems without requiring the patients to travel to their primary treating hospital. The same can be true for AfterCare. Very few of the tests required by survivors are so high-tech that they need to be done in the primary treating hospital. But the major challenge is ensuring that we can provide the multidisciplinary care that some survivors need, particularly access to mental health supports, which I think are in very short supply. My goals are to ensure survivors with the highest risk for complications are able to access the clinics and receive care appropriate to their situation, and develop a sustainable strategy that better incorporates patients’ primary care providers so that the ever-growing number of survivors have sustained access to appropriate care.

It’s a Privilege to Care for a Child with Cancer

Posted on May 7, 2021 by admin

Denise Mills, MN, NP Pediatrics

My introduction to POGO started 20+ years ago when I attended my first POGO Symposium. Back then, I craved learning more about pediatric oncology, and there were many POGO educational opportunities from which I could choose.

So, one day (and I am not sure of the exact details of how this happened), I found myself in a car with Dr. Mark Greenberg, a founding member of POGO, Corin Greenberg, POGO’s Executive Director at the time, and another staff nurse. We were on our way to the CBC to participate in an interview about childhood cancer awareness. They wanted a novice nurse’s side of the story along with Mark’s expert thoughts.

I was so nervous. Then came THE question.

“How can you work in pediatric oncology when it is such hard work?”

All of us who work in pediatric oncology either dread or welcome this question. It can be a conversation stopper or it can lead to an opportunity to educate the public about this important cause.

“It is a privilege to care for a child with cancer,” I remember saying.

At the time, I actually thought that I understood what it meant to do this work and I probably did to an extent.

I continued along in my nursing career gaining more knowledge and expertise. I felt good about my practice; I understood my purpose.

Fast forward to six years ago, nearly 15 years after that CBC interview. I found myself caring for my mom in a hospice. I spent hours there watching the healthcare providers at work, wondering, how do they do this?

One day, I was talking with a nurse.

“What kind of nursing do you do?” she asked.

“Pediatric oncology nursing,” I said.

She then shared with me that 15 years before, her daughter had neuroblastoma and had died. We talked for a little bit and on her next night shift, she brought in a photo album, sat with me, and shared stories about her daughter. After, she thanked me for listening and for asking her questions about her daughter. Most people were too uncomfortable to talk with her about her daughter or acknowledge that she had a deceased child. She said that it was always the staff at McMaster Children’s Hospital and SickKids, where her daughter was treated, who understood what she was going through the most and were the easiest to talk to.

That interaction helped me fully understand how the care we provide has an impact on families. And so, to do the best in my work I believe I need the best ongoing education.

The annual POGO symposium is a high-quality conference and—along with POGO’s one-day education events—has played a significant role in my professional education. POGO’s reputation for excellence in education attracts a broad spectrum of healthcare providers to present and learn about topics related to survivor care, standards of care at POGO Satellite Clinics and research.

And through my work with POGO I can be a champion of childhood cancer care with the general public and educate healthcare providers across the province.

To this day, I still say that it is a privilege to care for a child with cancer and their family. After all, where else can you go to work and get hugs and high fives (from the kids) all day long?

Denise Mills, MN, NP Pediatrics, works at The Hospital for Sick Children in the Solid Tumour, New Agents and Innovative Therapy, MIBG Program. She is co-chair of the POGO Nursing Committee and a past member of the POGO Board of Directors. She was a member of the planning committee for the 2018 POGO Multi-Disciplinary Symposium on Childhood Cancer and the Pre-Symposium Nursing Seminar. Denise is also a recipient of a POGO Seed Grant to fund her study “Improving Quality and Consistency in Family Education Prior to First Discharge Following a Pediatric Cancer Diagnosis.”

COVID-19 Update: What Hospitals are Doing

Posted on January 26, 2021 by admin

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:

Connecting through telephone or videoconferencing and rescheduling hospital appointments
Deferring imaging and blood tests when possible
Utilizing community-based laboratories for blood tests when possible

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:

Symptom screening is occurring at the hospital and clinic entrances
There may be limitations on the number of adults/family members allowed to accompany a child in the hospital
Playrooms may be closed

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.

The Value in Virtual Racing

Posted on September 4, 2020 by admin

By: Cynthia O’Halloran

Once upon a time, when virtual races were first making their debuts on the running scene, I scoffed at them. “Why would anyone want to do a virtual race?” I wondered. “What’s the point? You’re still running on your own and I do that all the time. I can push myself to run a fast 5K any time I want without wasting my money.” At that point in time, to me, the whole premise behind virtual races was a money grab.

Fast forward to the spring of 2020 when race after race was cancelled. The goals that we had been targeting simply vanished into thin air. My post-injury hashtag #trainingtotrain became #trainingfornothing. While my dedication to my sport was there, my enthusiasm to train without a foreseeable goal race was not. It wasn’t long before I found myself thinking about virtual racing.

“Do I really need to spend money on something like this? I don’t need a t-shirt or another medal.” But the more I thought about virtual racing, the more I realized that my participation was not really about me. It was about supporting the running community.

“In the same way that we support small businesses,” I told my husband, “we need to support the race directors. Racing is their business. And they have been good to me. There are so many races that have helped me become the runner that I am today. Their race directors are struggling right now so supporting them by registering for a virtual race is the right thing to do.”

The more I spoke with Dave about this, the more I understood virtual races. “And they help charities too. Hundreds of charities depend on fundraising from road races. Right now, that isn’t happening and charities are being hit financially. So a virtual race helps the race organization and a charity. It’s a win for both.”

After making a decision that I never would have a few years ago, I registered for the Toronto Women’s Run Series Virtual 10K, one of three races in a series directed by Cory Freedman. This a major fundraiser for POGO (Pediatric Oncology Group of Ontario); as a parent of a brain cancer survivor, I know how important supporting this charity is. This race also holds a special spot for me as it is one of the first women’s only events designed to encourage women as runners and walkers. For me personally, the races helped build my confidence as a female athlete and motivated me to starting chasing my dreams. So, in my eyes, the Toronto Women’s Run Series 10K was one event that I just had to support.

I registered and ran, not raced, on the following Saturday. I ran longer than I needed to (11.25K) and my average pace was slower than my 10K race pace, but I didn’t care. I felt good. I was supporting the running community and helping a charity. But what I didn’t expect when I registered was the happiness that I felt from finishing, from being reconnected to the racing scene – even if it is a virtual one.

As runners, we are use to giving back and now is not the time to stop. Race organizations are trying to stay on their feet and, quite frankly, we need them to survive if we want to return to racing in a post-pandemic world. The charities they support also need our help. So if you are able, find a virtual race and register for it. Pick one that means something special to you or supports a charity you value. Perhaps you’d rather race virtually in some faraway place where you have always dreamed of visiting. Or consider making a donation to a local charity that your favourite race supports. Now, more than ever, is the time for the running community to come together.

This blog was originally published on www.cynsspace.com where you can find more stories from Cynthia about running, cycling and self care.

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