admin, Author at POGO

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.

COVID-19 Reveals Benefits of Home Visits for Families of Children with Cancer

Posted on September 4, 2020 by admin

A Reflection from POGO Interlink Nurses

The COVID-19 pandemic transformed our work in such a way that we see, clearer than ever before, how essential traditional home visits are in supporting families through their child’s cancer diagnosis. Currently, virtual visits are the norm and are taking place by phone or on video conferencing platforms like Zoom and the Ontario Telehealth Network. POGO Interlink Nurses are the healthcare team members who connect the family to important hospital and community supports—including school*—so it makes perfect sense that in-home visits are integral to our work. In fact, we rely on these visits to establish a connection with our patients, their siblings and other family members in a more meaningful way and in a safe place, which is especially important for siblings.

But just as important, the home visit is a critical part of determining how the family is doing. Home visits typically allow us to use observation and our assessment expertise to gain greater insight to a family’s circumstances which cannot be duplicated in virtual visits. Being in a family’s environment gives us a glimpse of how their lives are at the time and what added stressors they may have. The broad range of factors, including social, economic, cultural and psychological that influence family coping and their adjustment to a child’s cancer diagnosis can be observed in a home differently from meeting in any other environment.

Read more about the POGO Interlink Community Cancer Nurses Program and watch this video.

Family structure, poverty and access to resources can reveal themselves (literally) and avoid the need for us to ask questions that might be misconstrued as “intrusive.” Still, we believe that many parents will share more readily when we are sitting with them in their home. Also, it is during the home visit when we might see that, for example, three family members are sharing the same bed or there is mould growing in the bathroom. We come to better understand that a family might have difficulty getting their ill child to clinic because they do not have access to transportation or there’s an elderly or sick grandparent in the home who cannot be left alone. The home environment provides context for setting up teaching. It can tell us if the family is able to cope with the complexity of home drug administration, like chemotherapy; palliative care for a dying child; or providing supportive care to help prevent and manage any adverse effects of the child’s cancer and its treatment.

Home visits, where we’re all face-to-face, also makes it easier and more efficient to complete and collect documents and application forms. This is especially critical when families have an urgent need to access financial support.

Since COVID-19, we have embraced and adjusted well to virtual visits to bring nursing and psychosocial care to our families, but there are challenges. Seeing a child and assessing their general physical well-being is not easy. We can teach virtually, but our use of teaching aids does not work well from a distance. For example, we can show our teaching dolls, but playing with them in a way that allows mom or dad to become familiar with central line devices is tricky. And though many young parents are embracing virtual care, it is more difficult for those for whom English is a second language or when families have less access to technology.

We anticipate and look forward to home visits because we know they have many benefits for children and youth with cancer and their families.

*This fall, the return to school for children with cancer will require extra support as families navigate the complexity of COVID-19. POGO Interlink Nurses will advocate for specific accommodations for patients unable to return to school, for families who are choosing to opt-out of in-person learning and for those reintegrating into the classroom setting.

COVID-19 Update: What Hospitals are Doing

Posted on March 26, 2020 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.

Coronavirus (COVID-19) Information

Posted on March 16, 2020 by admin

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 P OGO 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.

For the latest information about the Coronavirus:
– Toronto Public Health
– Ministry of Health – Ontario
– Public Health Agency of Canada

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:

In most cases, POGO Counsellors will not be travelling to their offices so will not have immediate access to all of their resources. This may mean a delay in getting information to you.
To practice social distancing, in-person meetings will be temporarily unavailable. However, POGO Counsellors will continue to be available by phone and email in addition to Skype or FaceTime, as available (counsellor/client dependent).
In keeping with hospital directives, POGO Counsellors may not be in attendance at POGO AfterCare Clinics. We ask that you please be patient when awaiting a response and know that your POGO Counsellor will get back to you as soon as possible.

Donations
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.

Becoming a Stem Cell Donor: How Jahni saved his brother’s life

Posted on November 27, 2019 by admin

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 D

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.

What is it like to be a stem cell donor to your little brother?

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 D

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Author: admin