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Awards Presentation Recognizes Contributions to POGO’s Provincial Mandate

Posted on November 21, 2018 by admin

What does it take to be honoured with a POGO Recognition Award? On November 2, close to 200 guests from the childhood cancer care community attending POGO’s 2018 Symposium Dinner found out as four worthy recipients were duly celebrated. The contributions of Dr. Jodi Rosner, pharmacist Denise Reniers, Dr. David Malkin and nurse Patti Bambury demonstrated why they were deserving honourees. Congratulations to all the 2018 recipients!

Dr. Jodi Rosner

The Friends of POGO Award recognizes considerable and sustained contributions by valued partners to POGO’s overall vision, mandate and goals through endeavours ranging from strategic, political, financial and beyond. Recipients set a standard, in the sector they represent, for their exceptional efforts. Dr. Rosner, a pediatrician at Grand River Hospital, received this award in recognition of her role as Founder & Director of the Kitchener Kids with Cancer Run/Walk. From the first Run held in August 2014 to the fifth Run held September 2018, the event has raised over $225,000 for POGO.

“This is not your ordinary race event,” says Patti Bambury, who nominated Dr. Rosner and calls her a “local hero.” “The race is filled with emotion, tears, inspiration, hope and positive energy. Pictures of survivors, children still in the battle and unfortunately a few children who lost their battle, line this beautiful, scenic route. On race day, Jodi is there before the sun rises. She then runs a quick and easy 10 kilometres, crosses the finish line and then runs right back to working on the sidelines.”

In addition to the steadfast dedication Dr. Rosner has demonstrated to her clinical practice and the children and families she treats, she has shown a deep commitment to promoting awareness of childhood cancer and POGO in the community. It is no wonder her nominators describe her as “a local hero.”

Denise Reniers

The POGO Valued Contribution Award is presented to individuals who have made an identifiable and substantial contribution over a prolonged period to the childhood cancer care community through POGO’s work. Through their collaborations and teamwork, they have demonstrated their commitment, enthusiasm and generosity. Denise Reniers was presented with this award for her contributions to improving care for children with cancer across Ontario in her capacity as a pharmacist with Children’s Hospital, London Health Sciences Centre.

Described as being crucial to the care provided at Children’s Hospital, Denise is known to go above and beyond to ensure the safety and quality of care of all patients. She has valiantly answered the call to champion POGO’s efforts for drug access, meticulously revising and validating data to support funding decisions for the benefit of the wider childhood cancer community. She has contributed to the development of POGO’s Childhood Cancer Care Plan and has reviewed and created content for the POGO satellite manual. Her flow chart of dosing “Capizzi” Methotrexate now hangs in POGO satellite clinics across Ontario.

Sadly, Denise passed away March 26, 2020.

This year, the POGO Companion Award paid tribute to two individuals, Dr. David Malkin and Patti Bambury, for their significant achievements to the field of childhood cancer care and control over the course of their respective careers, and to the breadth and scope of their involvement with POGO. The selection committee determined that they exemplified excellence, leadership, innovation, integrity, collaboration, teamwork and dedication.

Dr. David Malkin

Dr. Malkin is senior staff oncologist and co-director of the cancer genetics program at The Hospital for Sick Children, senior scientist in the genetics and genome biology program of the SickKids Research Institute, and professor of pediatrics at University of Toronto. His unparalleled research contributions to the field of pediatric oncology have led to revolutionary discoveries including increased understanding of how DNA can accelerate the development of cancer in people with a genetic risk of cancer and how genomic changes may be used as a diagnostic marker of cancer risk. Dr. Malkin has been awarded millions of research dollars, including $5 million from the Terry Fox Research Institute to catalyze a $25 million precision oncology initiative, better known as PROFYLE. Grants have enabled him to continue his groundbreaking work in the surveillance and treatment of patients with Li-Fraumeni syndrome (LFS). Published in Lancet Oncology, his prospective study related to screening for carriers of TP53 mutations and LFS has almost single-handedly driven the American insurance industry to recognize the value of surveillance, leading to more rapid approval of payments for these tests.

In presenting Dr. Malkin with his award, Dr. David Hodgson, POGO’s Medical Director and Chair in Childhood Cancer Control, noted that his nominators described him as a trailblazer, an exemplary teacher and educator, a visionary, whose trainees have been recognized with prestigious POGO fellowships and poster awards.

“We salute you for your unparalleled research contributions; your sustained dedication as a leader in provincial, national and international cancer control; and your tireless efforts to improve your patients’ quality of life. We also acknowledge with deep appreciation, your dedication to advancing POGO’s mission and mandate in your former role as Medical Director and POGO Chair in Childhood Cancer Control.”

Patti Bambury

Patti Bambury’s distinguished nursing career truly embodies the qualities of a POGO Companion – an individual who is committed, strives for excellence and has exceptionally contributed to advancing state of the art childhood cancer care and control.

For over two decades, Patti was involved in numerous POGO committees and initiatives, championing the important role of nursing in the care of children with cancer.

Patti put her heart and soul into helping to conceptualize POGO’s Provincial Pediatric Oncology Satellite Program, its systematization in the first manual Blueprint, its implementation and its successive scope of practice updates. Her commitment to advancing the scope of nursing practice and standards in POGO Satellite Clinics was unwavering.

Patti participated in the development of POGO’s Pediatric Oncology Nursing Curriculum at McMaster University, becoming one of its first successful graduates.

She was a long-standing member of the POGO Provincial Nursing Committee, from 1995 until her retirement in 2018, where she presented many pediatric oncology nursing practice issues and obstacles for review and discussion. She identified gaps in the utilization of personal protective equipment for pediatric oncology nurses, which subsequently resulted in the publication of a document of recommendations. Patti was instrumental in advocating for the implementation of telephone practice and symptom management guidelines for pediatric oncology nurses given the trend for early discharge of patients and their families post diagnosis.

Patti’s leadership and long-standing commitment to POGO is further evidenced in her contribution to many provincial pediatric oncology plans, from POGO’s first report in 1994 to the current Childhood Cancer Care Plan. A member of POGO’s Board of Directors and Advisory Council, Patti is a past recipient of the POGO Valued Contribution Award and the Joan Schatz Belisle Fundraising Volunteer Award for her efforts to generate public awareness of POGO’s work through annual local Childhood Cancer Awareness Month events and to generate significant dollars raised through Clarky’s Kids for POGO.

New POGO Clinic Helps Teen Stay Connected with Friends

Posted on October 12, 2018 by admin

In September 2018, at the launch of the new POGO Pediatric Oncology Satellite Clinic at Peterborough Regional Health Centre (PRHC), Theresa Serracino-Inglott, husband Mario and son Anthony spoke on behalf of the parents and young patients who will be receiving care.

Last year in late August, Anthony was gearing up to start his Grade 11 year when he was diagnosed with acute lymphoblastic leukemia (ALL). Anthony spent most of his first six months at SickKids hospital because of complications and an extremely tough protocol for his high-risk diagnosis. Throughout the past year – and more so in the last six months – the Pediatric Outpatient or POP Clinic at PRHC has been our second home.

In April, Anthony was here for supportive care close to 20 days, and every day he was greeted with a smile and the exceptional care we have come to know from Shay Cannon and the POP Clinic Team. This was such a relief because as parents of children with a cancer diagnosis, we are continually being bombarded with difficult and gut-wrenching fears – and leaving the safety of SickKids Hospital is one of them.

Having to take your child to a new place for their care and allowing unfamiliar medical staff to provide treatment leaves us parents feeling vulnerable and scared – but once we walked through the doors of the POP Clinic and met Shay and the POP Clinic team, our fears subsided. Anthony immediately made a connection with the staff that has only strengthened over the months. Being closer to home to attend to such things as his fevers and blood work has meant a lot to Anthony. When he was admitted with a fever and had to stay at PRHC for more than a couple of days, it meant that his friends could easily come and keep him company to pass the time.

Throughout this time, the POP Clinic team was already beginning the transition to become an official POGO Satellite Clinic, which included staff training in all of the specialized areas of care we knew Anthony would need.

Now that this is an official POGO Satellite site, I can’t help but think of “future POGO families” in our area. Perhaps today, the news of the new clinic may not even register, but when they are burdened with their child’s diagnosis, they will have these things to ease their journey:

Closer access to chemo treatments
A “fever card” that is our direct route to the in-patient unit, allowing us to bypass emergency
Coordinated care between PRHC and SickKids that meets the high standard of care that POGO Satellite Clinics deliver
A trusting relationship with qualified staff that go above and beyond for patients in their care
Support from other POGO families that become lifelong friends because of this journey they’ve shared together

Having a POGO Clinic close to us makes life as a parent a whole lot easier. Feeling financially strapped is a common thread among families of children with cancer and satellite clinics give some relief to that. The shorter distance helps us save money on gas for the car, the need to eat out, motel costs, and childcare needed for siblings.

Anthony has already benefitted from shorter clinic visits. This is important because as a teen with cancer, many occasions have been missed because of treatment. Having the accessibility of the POGO Clinic gets him back to his friends who play a very important part in his recovery.

Parents of children with cancer certainly would have never chosen this path for our children, but because this is where we find ourselves, I want to say how grateful we are to POGO and to Peterborough Regional Health Centre for making it possible for families like ours to have an official POGO Satellite Clinic right in our community. We can’t thank you enough for easing the burden by keeping many aspects of our child’s cancer treatment closer to home. Thank you.

Read the media release

Selena Goes to Camp—No Special Directions Required – by Natasha Koss

Posted on August 16, 2018 by Kelly Zorzi

Two years in remission and my daughter Selena is doing great. Her hair has all grown back, she’s in school, she plays sports, rides a bike. She is thriving. To everyone else, she is a perfectly normal, happy, healthy seven-year-old. But in my overprotective eyes, she’s my little four-year-old, diagnosed with cancer. At school, I tell her teachers to take special care of her. “She is in remission,” I remind them. “She must hydrate often, make sure she eats her lunch and don’t let her run too fast.” If she has a tummy ache, I go running. And my daughter, knowing that, takes full advantage. Yikes! The problem is ME. I bubble wrap my daughter to make ME feel comfortable.

Selena and her camp counsellor Katrina

This summer, Selena threw me for a loop. I signed her up to several special needs camps for children with cancer, as I have for the past few summers. The week before the start of camp #2, she sat me down to tell me that she did not want to attend. She could not explain why, she just knew that this year she did not want to go. I needed a plan B and I needed it quick. Light bulb moment: What camp is her cousin going to and can I get her in? I called at 7:30 pm and the director answered…phew! Then, as luck would have it, she had a few more spaces for the session. “Sign her up please,” I said super excited, but oh so nervous.

I advised the camp director that my daughter is a child in remission, but promised myself not to tell the counsellors she needs extra love and attention and not to call the camp to check in. I let go and allowed my daughter to have a fun time at camp, no special directions required.

Watch Creating a Happy Home When Your Child has Cancer, featuring Natasha and Selena.

This was the first-ever “normal” experience of Selena’s life since her diagnosis. Even after she went into remission, I became terrified of everything and tried the best I could to shield my daughter. Private school with her own teacher, camps that cater to children with special medical needs, whatever I could do to protect her. But now, Selena was standing up to me and saying, “No more mama I got this.”

She had a blast at camp and had no trouble keeping up with the other children. I learn so much every single day from my incredible, brave, strong daughter. What a relief for me to know my child is living her best life.

Moral of the story, Selena is A-OKAY. Mom on the hand needs about 20 years of therapy to get over the fact that she was diagnosed with cancer.

Overprotective parenting is common after a childhood cancer diagnosis, but can it have negative repercussions later in life? Read Amanda Sherman’s POGO-funded research: Is Overprotective Parenting Linked to Anxiety and Depression?

The Burden of Surviving Childhood Cancer – by Leanne Brown

Posted on June 13, 2018 by Kelly Zorzi

When I was 10 months old, I had persistent raspy breathing that everyone thought was a cold or allergies. Then one night I stopped breathing. I was rushed to the hospital, x-rayed and sent to The Hospital for Sick Children where they found a tumour the size of a grapefruit wrapped around two vertebrae in my upper spine—neuroblastoma was the diagnosis. I was rushed into surgery to remove the tumour and a large portion of muscle and tissue out of my back. My chances of surviving were 5 – 10% and my parents were told that if I DID survive, I would likely be paralyzed.

Leanne Brown with her children Greg and Beth

After cobalt radiation treatment, I went into remission at 18 months old and never relapsed. As I grew up, my doctors explained to me the side effects I was experiencing, those that might still come, my inability to have children, and the fact that my life expectancy was not the same as my peers. For the rest of my life, cancer and I will walk together in some form. That is my basic medical story, but it is not my whole story. While most childhood cancer survivors become well adjusted adults, many have an affected sense of self and some may experience depression, anxiety or other mental health issues.

Watch Straight Talk: Emotional Health After Childhood Cancer

One rarely discussed issue is something I have been through, and most survivors I know have experienced: survivor guilt. It’s a hard concept to wrap your head around until you understand where it originates.

Growing up, many of the children who were treated alongside me did not survive; including a
friend who was very special to me. For a long time after he passed I felt guilty for living, in fact
I still do sometimes when another life is lost. But the feelings of responsibility don’t end there.
Logical or not, many survivors feel guilty for the sacrifices our parents had to make, for the social
and emotional challenges our siblings went through, and even for being who we are, rather
than super humans doing extraordinary things. There is a burden to be better than “normal.”

As an adult, the feelings have never really gone away, but I have found ways to deal with them.
As a teenager and young adult, the guilt, coupled with the deeper understanding of my own
mortality and no one to relate to, was very isolating. That is why I try to address the topic with
other childhood cancer survivors, especially the younger generation. It has catalyzed many
interesting and emotional conversations, and in some cases, provided a space for people to
voice something they have never said aloud before.

Leanne Brown has been a speaker at the biannual POGO Survivor Conference and POGO AfterCare Education Day. Although she was told she would never have the physical strength and endurance of her peers, she embraces life by skiing, running, hiking, camping and canoeing, and she even completed a half marathon in 2013. Leanne lives with her two children in Ottawa.

When Your Tumour Leaves You With a Disability – by Noah Severino

Posted on April 4, 2018 by Kelly Zorzi

Noah Severino

I was 9 years old when I was diagnosed with late stage rhabdomyosarcoma. I had been experiencing chronic fatigue, migraines and tingling in my face for over two months, but none of the doctors could find anything wrong. Then one morning I woke up and I was completely blind in my right eye.

The ophthalmologist found no reason for me to lose my sight so he ordered an emergency CT scan. I remember the pediatrician on call coming out of the viewing room and saying to my mom, “You need to get to SickKids Hospital right now; they are waiting for you.”

A tumour had basically encapsulated my brain and was moving; the doctors thought I was 24 – 48 hours away from dying. They started me on emergency chemo and radiation before they could even put a name to what I had. All in all, I had a total of 50 rounds of chemo and 30 rounds of radiation over the course of a year. Radiation caused third-degree burns on my cheek, head, in my mouth and down my esophagus, so eating was a real challenge. I used to drink coffee creamers to keep my weight up and because my mouth was so raw.

My tumour was so aggressive and advanced when I was diagnosed, that doctors wondered whether I would be able to overcome it. They wondered if I would be functional or articulate after such intense treatment, but here I am, 17 years later, a graduate of the Master of Management program at the Schulich School of Business, and thankfully cancer-free.

Anyone who knows a childhood cancer survivor knows that life doesn’t just return to normal when you are declared cured. The tumour severed my optic nerve and I am completely blind in one eye. The radiation permanently damaged my thyroid and my pituitary gland, and for a long time my tear ducts and salivary glands were not functional. I still live with daily headaches that range from two to nine on the pain scale.

I have annual checkups at my POGO AfterCare Clinic. They are monitoring me for secondary cancers (because of all the radiation) and cardiac issues that may arise due to the type of chemotherapy I had. I get regular MRIs to look for brain tumours and I am thankful that my results have been clear.

As you can imagine, a tumour around my brain, radiation to the head and a year out of school can put a kid at a disadvantage academically.

I was luckier than other childhood cancer survivors in the same situation in that a neighbour who was a retired teacher offered to be my private tutor to help me catch up—I was actually working at a higher level than my peers at one point. Still, I found school challenging (albeit a welcome one) and used special accommodations, like a note taker to help supplement my own notes in case I experienced writing fatigue or a migraine.

Watch Straight Talk: Assistive Technology after Childhood Cancer

Counsellors in the POGO School and Work Transitions Program (Transitions Program) work one-on-one with survivors like me to help us achieve our academic and employment goals. A HUGE challenge for me has been disclosing my disability when applying for a job. No one wants to hear that a potential employee isn’t going to be able to type quickly, or won’t show up for work some days because of the headaches and chronic pain he has to deal with.

The Transitions Program is funded entirely by donations from the private sector. DONATE TODAY.

Between some of the workshops I have attended, help from my family and talking one-on-one with my counsellor, I have the tools I need to advocate for myself. It is very intimidating to put yourself out there, but I have gained the confidence I need to say, “I’m a childhood cancer survivor and as a result of my treatments this is what I have to deal with, but I promise you I’m a hard worker and you will be happy with what I can do.”

I can honestly say that if I could go back in time and take away my cancer experience, I don’t think I would. It has shaped my goals and made me who I am. My hope is to one day work with other childhood cancer survivors or kids with serious illnesses to help them grow and be the best they can be.

Through his work with his POGO Counsellor, Noah received a number of post-secondary scholarships and graduated with a (Honours) Bachelor of Humanities from Carleton University and a Master of Management from the Schulich School of Business at York University. Noah is currently working at the Heart and Stroke Foundation.

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