» neuroblastoma

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.”

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.

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Tag: neuroblastoma

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

The Burden of Surviving Childhood Cancer – by Leanne Brown