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A Search for Health Care beyond Survival: Rabi’s Story

My name is Rabi Qureshi. I am 33 years old and I am a three-time cancer survivor who feels as though I’ve fallen through the cracks.

I was 15 when I was diagnosed and treated for thyroid cancer.  By all accounts, my life should have returned to normal. Instead, I gained 40 pounds in just two months, developed cystic acne and my grades plummeted.

At 21, I finally lost the weight but was still struggling with depression when the thyroid cancer came back. It had spread to my lymph nodes. The surgeries that followed left me with chronic pain in my head and neck that had me stuck in bed for the better part of three years, contemplating suicide daily. I promise that is not an exaggeration.

Rewiring my Brain Came Years after Treatment

By 2012, at 24 years old, I was feeling better. Nearly all the weight was gone. I had found a new passion and returned to college to pursue my dream of becoming an events specialist. And though everything seemed to take triple the effort or more than it used to, life seemed livable again. So I ignored the small bump under my skin that was slowly getting harder and bigger, and delayed the biopsy until the summer of 2013. What caught me off guard was that this time it was breast cancer. After five surgeries and some aggressive chemotherapy, I felt like a fraction of the person I once was. Mostly, I was living in a haze of foggy thoughts and fractured logic. It took several years out of treatment for me to rewire my brain so that I could articulate my thoughts and speak my mind confidently.

I can’t summarize all that cancer took from me, but I can tell you peace of mind was definitely among the body count. Turns out PTSD among cancer survivors is a more common issue than it is common knowledge.

It’s 2021 and I have a very limited number of functional hours in the week. I am still struggling to take care of my body and brain. I have been ping-ponged from one doctor to another who seem not to know what programs, resources and next steps are available. I work hard every day to teach myself ways of healing on my own but I can’t help but feel that the system is fractured and I am the collateral damage; I don’t believe I should have had to face this alone.

Up to this point, I experienced a severe disconnect between programs and services and my healthcare specialists. I believe the result is an unassembled Mr. Potato Head model and that interdisciplinary coordination and cooperation among fields of medicine should be at the centre of a more efficient patient care model.

Discovering POGO AfterCare

I recently spoke about my health struggles and lack of support from the healthcare system at the 2021 POGO AfterCare Education Day. I was encouraged by how receptive the doctors, nurses and psychologists were to what I had to say and how supportive everyone was. A friend of mine, another survivor who also spoke at the POGO event, convinced me to make an appointment at the POGO AfterCare Clinic in Toronto, something I had only recently become aware of and had yet to explore. It has only been a couple of weeks since that first intake call, but already there seems to be a plan in place for an integrated approach to treating the variety of issues that my cancers have left me with; I will have to keep you posted. I am cautiously optimistic, in spite of myself.

Modern Health Care Should Aim for Quality of Life 

Class, ability, gender, a safe home, pre-existing conditions and race/culture can all contribute to unique challenges in survivorship. My story, only one of many, is evidence that it is more important than ever to create holistic systems designed with compassion at their roots, as a complete and comprehensive patient care model, systems that take the whole person into account—mind, body and circumstance. Modern health care, after all, shouldn’t stop at quantity of life; it’s well past time to prioritize quality of life.

Access to primary care in a shared-care model with AfterCare is critical for survivors


Rabi Qureshi childhood cancer survivor
Rabi Qureshi is an author, advocate and three-time cancer survivor. She is also a special events manager and an artist who is outspoken in matters of mental health care and holistic and preventative medicine. 


POGO AfterCare Clinics promote health and health education, and monitor survivors regularly for late effects of cancer treatment, identifying these effects as early as possible. Ultimately, POGO AfterCare Clinics contribute to advances in cancer care; if a particular form of treatment is found to cause a certain long-term effect in cancer survivors, current treatment practices can be modified, ultimately improving outcomes of future survivors.

New POGO Clinic Helps Teen Stay Connected with Friends

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

 

 

Dear Mom by Jamie Irvine

It’s hard to believe that it was 21 years ago when I was diagnosed with acute myeloid leukemia. Like many families, you and Dad had to “split responsibilities” to take care of the family, so while he continued to work, you spent your time in hospital with me or at home with Ben.

To say my treatment was rough would be an understatement. As my cancer was caught late, doctors gave me a 55% chance of survival at best. Being the type of kid I was, I made you promise to tell me if I was going to die, and then the day came when you had to keep that promise. A new doctor misread my chart and told you I only had days to live. I found out years later that you spent an hour outside my room with the unit social worker trying to figure out how to break it to me.

Later, in treatment, I became allergic to random donor platelets and because you were the closest genetic match, you provided every single transfusion for the rest of my three-year hospital stay. It got to the point where your arms became so covered in bruises that the hospital had to monitor how much you had given. You also became my bone marrow donor, which I know was one of the most painful experiences of your life. It didn’t end there though.

Just before my second bone marrow transplant, I developed that sudden “bone pain” and the hospital gave me a morphine drip to help cope. Unfortunately, this drug didn’t make me happy or drowsy like with other patients. Instead, it completely changed my personality and made me very angry and hostile to everyone. I would scream and threaten anyone that came into my room. Worst of all, I would scream at you. I would tell you how “I wish I would die,” or worse, how “I wished it was you instead of me.” I don’t remember much of that time in treatment but I do remember that you would just take all the verbal abuse I dished out. Instead of lashing out or fighting back, you would tell me how you wished you could take on all of my pain. Years later, you told me that you asked the social worker why I would say such things. They told you that I knew (subconsciously or not) that you would not abandon me. It must be true because you are still here supporting me.

Throughout those dark times, you still cared for and spoiled me. When I was wasting away from lack of nutrition, bald from chemo and had a feeding tube dangling from my nose, you still took me out on day trips to my favourite comic or video game store. You must have given the evil eye to anyone who looked at me funny because no one ever said anything. I even remember when you spent a whole month tracking down that one rare video game that I just had to play.

To this day, I still don’t know how you found the strength and courage to manage. I don’t think a normal person could go through all that and still offer the loving support and care that you did. I don’t know if I will ever be able to have children (due to the treatment I went through) and at this time I’m still too scared to find out. But I know that even if I’m able to show them half of the love and strength that you continue to show me, I will make one hell of a parent.

I’ll love you forever,
I’ll like you for always,
As long as I’m living
My Mommy you’ll be.

-Modified from Robert Munsch’s Love You Forever

Love Jamie


A Call from Greatness by Jamie Irvine

In the spirit of playoff season, I want to share my little brush with hockey fame when I was going through cancer treatment at just 11 years old.

When I was six years old, my family moved from Saudi Arabia back to Canada. Coming from the desert, I had never experienced winter before, let alone this otherworldly-like game called hockey. I was immediately hooked.

I had great dreams of one day joining the NHL myself, dreams that were quickly dashed after my first attempts at learning to skate resulted in such highlights as me crashing into walls while trying to stop and throwing up after drinking too much hot chocolate. Soon my passion focused on collecting hockey cards and watching the game on TV. It was my personal goal to collect every card or watch every game that even mentioned Wayne Gretzky.

When I was 10 years old, I was diagnosed with acute myeloid leukemia. To say that my early days of treatment were difficult would be a gross understatement. In truth I was defeated and had given up hope. Then one day, out of the blue, I received a call to my hospital room.

“Is this Jamie Irvine?” said the male voice on the other end of the phone.
“Yes,” I said.
“This is Wayne Gretzky.”

And so the conversation began, lasting between 5-10 minutes, but honestly everything is a blur after he said his name. I was in pure euphoria.

A few weeks passed and I received a care package in the mail from Wayne himself. It was full of signed pictures and various other goodies. All of which I still treasure to this day.

Pretty cool story, right? Well it doesn’t end there. A few years later, my family had moved to Newmarket, Ontario, and I had just finished an experimental treatment and was given the all clear. I attended Camp Oochigeas that summer and met a man named Gordon (Gordo) MacKay. He happened to share my passion for all things Gretzky and after I told him my story, he revealed that he had helped design Wayne Gretzky’s restaurant in Toronto. He invited my family to a free meal at the restaurant and I was shown the “secret” storage room full of Gretzky memorabilia. Gordo let me try on some of the Gretzky jerseys and gloves while my brother got to try on some of Michael Jordan’s game worn shoes. Fun fact: Wayne Gretzky and Michael Jordan would occasionally exchange skates and shoes.

For me, Gretzky’s title “The Great One” goes beyond his hockey record. He was willing to reach out to a sick child who was feeling defeated and offer the support only a hero like him could provide. And for that, I am forever grateful.

To this day, Wayne Gretzky remains my favourite player of all time and my passion for hockey has not waned. Of course, these days I cheer for our home team.

#GoLeafsGo!


About Hope by Dr. Michael Taccone

Dr Michael Taccone_Symposium 2015 emceeIn 2015, I was invited to speak at POGO’s Annual Multi-Disciplinary Symposium on Childhood Cancer on the topic of hope, the theme of the evening. Of course, I was honoured. But at the same time I was filled with worry that I would not do the subject justice. After all, what did I know about hope? Usually when I write it’s about neurosurgery or my cancer research. That’s what I am used to and that’s what I am most comfortable with. It’s never personal, it’s never uncomfortable and it’s never unexpected. I’ve spent a great part of my life learning medicine, with all its beautiful complexities that can be explained and understood through science. I’ve learned to value the things in life that have explanations, can be proven, and follow a predictable pattern. I value them for two reasons. Firstly, I’m being trained as a neurosurgeon and, as a neurosurgeon, I make a living on my ability to prognosticate and intervene, often with only limited information and even less time. Secondly, but most importantly, I value those things that are comfortable and predictable because I did not always have that luxury. I grew up in an environment that could not be explained, could not be rationalized, and was often very uncomfortable—all because I grew up with childhood cancer.

It feels as though I have told my story a million times. The story that shocks my friends, patients, or colleagues when they find out that I grew up with cancer. In all my experiences of telling my story though, the most memorable was when someone asked me, “Are you sure you had cancer?” Surprisingly, it is not an uncommon occurrence. When people look at me, I think they see no signs of someone who had cancer. I don’t have any visible scars, I don’t have any hair loss and I don’t have any physical or cognitive disabilities. To the outsider, I guess I look and act just like anyone else. When I look at myself though, I see a life inextricably shaped by cancer. Cancer is why I became a doctor, it is why I am involved in research, it is why I volunteer for organizations like POGO, and it is why I am on the road to becoming a pediatric neurosurgeon.

In many ways, my life as a cancer patient feels like a dream. Why? Because we can’t explain dreams. They often are so far from reality that they can’t be real and are out of our control. They just happen. Sometimes our dreams can make us happy and so we wish they would last forever. Other times, they can be so terrifying that you spend every passing minute hoping you will wake up. From the day my oncology team told my family and me the news that I had an aggressive leukemia, we spent every day for the next three years hoping that sometime soon we would all wake up.

Three years of chemotherapy and repeated hospitalizations is a long time for anyone, but for an eight-year-old, it’s an eternity. I was always reminded that one day it would be over, that I would go back to school, that I would see my friends, and that I would get to be just like every other person my age who had the freedom to be a kid. But there were so many obstacles along the way. Some days, it felt like the new life that I had come to know as normal, would never end. Whether it was the frequent admissions for febrile neutropenia, the adverse reactions to therapies, or the fear of waking up without my mother and father after each procedural sedation, all I could do was hope. Whether it was the many painful needle pokes, the repeated infections, or the constant worry about the long-term effects of brain irradiation, all we could do was hope. Or, whether it was the news I received that, after three long years of fighting my cancer had returned, all we had left was hope. Whenever I felt powerless, beaten, or scared, there were no statistics, treatment plans or scientific breakthroughs that helped. It was hope and hope only that got me through.

Why did we hope? We hoped because hope was all we had. Hope was all I had. And more than any medicine or procedure, it was the single most important thing we needed and we needed it on a daily basis.

As both a patient and a doctor, I have personally experienced the limitations of science and witnessed the unlimited possibilities that hope brings. When I saw my patient’s family strengthen and come together after the diagnosis of a devastating brain tumour, I don’t think it was just because of our medical care or the success of surgery, it was hope that did that. When I watched my patient with a debilitating traumatic brain injury take his first steps after a month of recovery on a ventilator, I don’t think it was just because of the physiotherapy or supportive care we provided. It was hope that did that, too. And when I witnessed my patient eventually wake from a coma caused by a ruptured brain aneurysm, and kiss his wife, I don’t think it was just because we secured the bleeding vessel. It was hope that made that possible. When the odds are stacked against us, when we are faced with the impossible, and when the world is telling us to give up, that’s when hope is there and that’s when it’s most important.

No matter how big or small our role is in caring for children with cancer, we can all be witnesses and instruments of hope. Most of the time, all that is left to do is recognize it. Then, and only then, will we see that where hope lives anything is possible.

You can follow Dr. Taccone on Twitter @michaeltaccone

Dr. Michael S. Taccone was diagnosed with T-cell Acute Lymphoblastic Leukemia in 1994 at The Hospital for Sick Children and has been in remission for 18 years. He is now a Neurosurgery Resident at the University of Ottawa/The Ottawa Hospital who has a special interest in neuro-oncology and technological advancements especially as they pertain to the pediatric population. Dr. Taccone is actively involved in both basic science and clinical research aimed at improving treatments, experiences and quality of life of patients and families affected by brain tumours. Dr. Taccone sits on the Steering Committee for POGO’s Provincial Pediatric Oncology Plan (2017 – 2022) and also Chairs the Childhood Cancer Survivor Sub-Committee of this long-range planning process. He is the Ottawa Head of the Canadian Neurosurgery Research Collaborative and serves as a member of the Professional Advisory Group for the Brain Tumour Foundation of Canada.