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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.”

Posted in Misc | Tagged Denise Mills, education, neuroblastoma, nursing

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.

Posted in Misc | Tagged AfterCare, cancer-free, childhood cancer survivors, late effects, neuroblastoma, radiation

2017 POGO Symposium on Childhood Cancer

Posted on November 24, 2017 by Jamie Irvine


The 2017 POGO Multi-Disciplinary Symposium on Childhood Cancer – Cancer in Infancy: Tiny Patients, Huge Challenges – examined clinical and scientific advances in cancer in infancy and the associated physical, psychosocial and medical issues, as well as focus on relevant resources, tools and strategies for a multidisciplinary audience.

Over 230 delegates representing a variety of disciplines attended the conference.

VIEW THE PROGRAM

VIEW THE PHOTO GALLERY

Click on the session titles below to view presentations that POGO has permission to share. 

NOTE: The content of each presentation below captures the unedited information and opinions presented by the speakers. 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

The Complex Nature of Neuroblastoma in Infancy
Rochelle Bagatell, MD

Developmental Outcomes for Infants with Cancer: Understudied and Underserved?
Melissa Alderfer, PhD

Retinoblastoma: An Eye to the Future
Furqan Shaikh, MD, MSc, FRCPC

BRIGHT IDEAS: An Evidence-Based Approach to Alleviate Distress in Caregivers of Children Recently Diagnosed with Cancer
Robert B. Noll, PhD

In Utero Surgery: Exploring New Dimensions for Infants
Jacob Langer, MD

Anti-Cancer Drug Pharmacology in Infants and Very Young Children
Clinton Stewart, PharmD

Rare Tumours of Infancy
Rajkumar Venkatramani, MD, MS, FAAP

WORKSHOPS

The Art and Science of Keeping Infants with Cancer Well-Nourished
Laura Collins, RD
Debbie O’Connor, PhD, RD

Measuring, Managing and Mitigating Cancer and Treatment Pain in Infants
Anna Taddio, PhD
Jason Thomas Maynes, PhD, MD

Developmental and Psychosocial Aspects of Caring for Infants with Cancer
Melissa Alderfer, PhD
Vanessa Burgess, MScOT, OT Reg. (ONT)

A Fine Balance Infection Control in Infants
Michelle Science, MD, MSc
Dana Devine, PhD

Posted in 2017 Symposium, Education for Health Professionals | Tagged 2017 Symposium, neuroblastoma, pain management, psychosocial, Retinoblastoma, tumours

The Complex Nature of Neuroblastoma in Infancy-Symp2017

Posted on November 24, 2017 by Jamie Irvine


VIEW THE PRESENTATION

Presentation Description:
This session will cover unique aspects regarding the presentation and assessment of neuroblastoma in infants. Key features of the natural history of neuroblastoma in infants will be highlighted, as will molecular features of tumours occurring in our youngest patients. Issues pertaining to drug dosing and supportive care for infants with neuroblastoma will also be discussed. In addition, outcomes for infants with neuroblastoma will be compared and contrasted with outcomes in other patient groups.

Speaker:
Rochelle Bagatell, MD
Associate Professor of Pediatrics, Solid Tumor Section Chief, Division of Oncology
Children’s Hospital of Philadelphia, University of Pennsylvania, Philadelphia, PA

Dr. Bagatell is a pediatric oncologist with an interest in extracranial solid tumours. She is the solid tumor section chief at The Children’s Hospital of Philadelphia where she leads a multi-disciplinary team committed to improving outcomes for children with high-risk solid tumours. In addition, she leads clinical research efforts designed to critically evaluate current therapies for children with high-risk and relapsed neuroblastoma, and is committed to conducting studies of new therapies for this population. She is the vice chair of the Children’s Oncology Group (COG) Neuroblastoma Disease Committee, and is chair of the upcoming COG Phase 3 trial for children with newly diagnosed high-risk disease.

Posted in 2017 Symposium | Tagged 2017 Symposium, neuroblastoma

Pediatric Synoptic Pathology Reporting Webinars

Posted on May 30, 2017 by admin

As part of POGO’s long-range plan for childhood cancer in Ontario, a task force was initiated to determine reporting protocols currently in use, to review/generate/approve reporting templates and conventions, and to recommend future practice in Ontario. The POGO Pathology and Molecular Diagnostics task force identified and endorsed the College of American Pathologists’ (CAP) existing pediatric protocols as the expert consensus-based approach to reporting and is recommending their adoption in Ontario.

To date, there have been three Pediatric Synoptic Pathology Reporting webinars, hosted by POGO,  the Canadian Partnership Against Cancer (CPAC) and Canadian Association of Pathologists (CAP-ACP), to educate the pathology community on these protocols and encourage their adoption. These webinars provide expert advice for advancing pediatric oncology toward standardized reporting of pathology specimens; optimal pathology investigation; incremental clarity of clinical implications; and unprecedented analytics.

Learning Objectives:

  1. To review the College of American Pathologists’ (CAP) protocols related to pediatric oncology and their use by pathologists.
  2. To understand changes in the latest revision of the CAP cancer protocols and electronic cancer checklists.

Audience:
Pathologists, Pathology Fellows and Residents;
Pediatric Oncologists, Surgeons, Radiation Oncologists;
Clinical Research Associates (CRA’s)

2017: Synoptic Pathology Reporting for Pediatric Patients with Ewing Sarcoma

Speaker: Dr. Dina El Demellawy, MD, PhD, FRCPC
Pediatric Pathologist, Children’s Hospital of Eastern Ontario (CHEO)                                                         Associate Professor, University of Ottawa and the University of Northern Ontario School of Medicine

(Presented March 22, 2017)

DOWNLOAD THE 2017 WEBINAR

NOTE: Select “Ewing Sarcoma” from the section entitled “CAP cancer protocol education sessions” to download and watch the webinar. A password is not required

2016: Synoptic Pathology Reporting for Pediatric Patients with Rhabdomyosarcoma

Speaker: Dr. Gino Somers, MBBS PhD FRCPA
Head, Division of Pathology, Hospital for Sick Children, Toronto, ON
Associate Professor, Department of Laboratory Medicine & Pathology, University of Toronto
Co-Chair, POGO’s Pathology & Molecular Diagnostics Task Force

(Presented May 11, 2016)

DOWNLOAD THE 2016 WEBINAR

NOTE: Select “Synoptic Pathology Reporting for Pediatric Patients with Rhabdomyosarcoma” from the section entitled “CAP cancer protocol education sessions” to download and watch the webinar. A password is not required .

2015: Synoptic Pathology Reporting for Pediatric Patients with Neuroblastoma

Speaker: Dr. Joseph de Nanassy, MD, FRCPC, CCPE, MCHM
Division Chief, Anatomical Pathology, Children’s Hospital of Eastern Ontario, Ottawa, ON
Associate Professor, University of Ottawa
Member, POGO’s Pathology & Molecular Diagnostics Task Force

(Presented June 18, 2015)

DOWNLOAD THE 2015 WEBINAR

NOTE: Select “Synoptic Pathology Reporting for Pediatric Patients with Neuroblastoma” from the section entitled “CAP cancer protocol education sessions” to download and watch the webinar. A password is not required .

2014: Synoptic Pathology Reporting for Pediatric Patients with Wilms Tumour 

Speaker: Dr. Gino Somers, MBBS PhD FRCPA
Head, Division of Pathology, Hospital for Sick Children, Toronto, ON
Associate Professor, Department of Laboratory Medicine & Pathology, University of Toronto
(Presented April 1, 2014)

DOWNLOAD THE 2014 WEBINAR

NOTE: Select “Synoptic Pathology Reporting for Pediatric Patients with Wilms Tumour” from the section entitled “Past CAP cancer protocol education sessions” to download and watch the webinar. A password is not required .

Posted in Pediatric Synoptic Pathology Reporting Webinars | Tagged neuroblastoma, pathology, rhabdomyosarcoma, standardization of reporting, synoptic reporting, wilms tumour

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