In 2014, both my husband and I were working long hours at high pressure jobs. It seemed as though our daughter Selena was spending more time with her nanny and grandparents than with us, and she was having behavioural problems at daycare. We made the decision that Selena needed more “mom time,” so I took a leave of absence from my job in women’s nursing apparel and I started working part-time at a restaurant. It paid off: Selena’s behaviour changed 180 degrees in that first year. She was happy and well-adjusted, and I got the opportunity to really know my kid in a way I hadn’t before.
So when our healthy child who never had so much as a cold said, “Mummy, I have a tummy ache,” we didn’t just blow it off like we might have the year before. We immediately took her to a walk-in clinic. The doctor pressed down on her stomach and noticed her liver was swollen. Although he attributed it to an infection, he was still curious so he made a requisition for an ultrasound. And for that, I will forever be grateful.
Selena’s stomach ache went away and she didn’t have a single symptom after that. If not for that ultrasound, they would never have detected a mass or ordered the blood work and CT scan that determined it was cancer. Selena was diagnosed with the worst type of Wilm’s tumour; we were told to get ready for a bumpy road.
Her protocol was experimental and based on yet-unpublished research out of the United States.
Step 1: Removal of her kidney and tumour
Step 2: 13 rounds of radiation
Step 3: 12 cycles of aggressive chemotherapy
Selena’s treatment completely wiped out her bone marrow and she was in semi-isolation for nine months. It was challenging. She couldn’t go to daycare, birthday parties or even the shopping centre. We decided to make home the best possible environment we could and we celebrated everything, from a single poke to the end of a round of chemo. We had a party every weekend with cake and lots of family (screened for even the slightest cold symptom) and the days were joyous and filled with laughter.
This last year was challenging in other ways. I quit my part-time job and managed all of Selena’s medical care. I had already taken a serious pay cut to be home and now I had zero pay, no employment insurance or benefits, and our expenses were rising. My husband worked extra odd jobs so we could get by and our POGO Interlink Nurse* connected us to every resource we were eligible for, including POGO’s Financial Assistance Program.
And now Selena’s treatment is over and she is doing so well. She is excited to start school; I am thankful that I get to return to the same job after being away for two years; and my husband and I are determined to get back on track financially. It will be hard to return to “business as usual.” You get attached to the reality you are in. There is so much readjustment after cancer, but we are looking forward to this next stage in our lives.
– Natasha Koss
*POGO Interlink Nurses play an important role between hospital visits. They provide excellent nursing support to the family and they work with schools to help them understand the needs of the young cancer patient. 12 cycles of aggressive chemotherapy
At four, I was diagnosed with stage 4 rhabdomyosarcoma, in my case a tumour the size of a baseball in the lower abdominal area near my bladder. At 20, I have lived almost my entire lifetime in cancer care. And alongside my parents, POGO, through its many programs and services, has been with me every step of the way. POGO teams have supported me through treatment, which included eight rounds of chemotherapy and a series of surgeries at the age of four. And now, 16 years later, as I manage the late effects that have developed as a result of my treatment, POGO AfterCare Clinics continue to support me.
Most people know that cancer treatment can be fairly aggressive, but what many don’t realize is that it can have serious side effects many years later. I continue to be monitored by oncology for second cancers. I need to see a cardiologist every six months because the toxic mix of drugs I was given has the potential to seriously lower my Ejection Fraction Index, which is the fraction of blood pumped out with every heartbeat. And I visit my internist annually because the surgeries that removed my tumour, also left a lot of scar tissue.
Until a few years ago, all of my follow-up care took place at SickKids where I was diagnosed and treated. When I turned 18, I graduated from the all-encompassing children’s hospital system, with its seamless management and coordination between departments, to the adult system (in most situations I am by far the youngest person in the waiting room!). While I have three new doctors spread across the city, luckily for me, and every childhood cancer survivor in Ontario, all of my follow-up care is still coordinated through a POGO AfterCare Clinic. So when my cardiologist wanted to change my medication, POGO teams were able to determine that it wouldn’t do any damage based on the treatment I had as a child. And when my internist wanted to do an exploratory procedure, POGO teams again intervened noting it could do more damage than good with the scar tissue that was built up over many surgeries.
As you can see from my personal story, childhood cancer requires a lifetime of follow-up care. I know POGO will be there for me over the next 20 years, 20 more after that and counting. Without the seamless care of POGO’s AfterCare Clinics, and survivor care programs, many young cancer survivors would fall through the cracks.
Two notable advancements in the diagnosis and treatment of childhood cancers are the science of genomics (how genetic changes occur in tumour cells) and the use of developing cancers in model organisms, such as the zebra fish, in order to develop new drugs to test and translate to human use. POGO Medical Director Dr. David Malkin discusses how now, more than ever, it is important to develop and fund collaborative research groups, across Canada and internationally, in order to catalyze significant leaps forward in the field of pediatric oncology.
David Malkin, MD, FRCSC is the POGO Medical Director and POGO Chair in Childhood Cancer Control and Professor of the Department of Paediatrics and Medical Biophysics, School of Graduate Studies at the University of Toronto. He is also a Senior Staff Oncologist of the Haematology/Oncology department for the Hospital for Sick Children. He spoke at the 2013 POGO Multi-Disciplinary Symposium on Childhood Cancer.
Straight Talk about Childhood Cancer is POGO’s series of video shorts featuring the insights of experts whose leading-edge work impacts the care, treatment and quality of life of childhood cancer patients, survivors and their families.
The Canadian Welding Association (CWA) Foundation has partnered with POGO to provide funding for seven aspiring welding professionals. The $2,500 scholarships will be available to childhood cancer survivors, and their immediate family members, who are currently enrolled in a welding program at a participating Ontario college*.
Treatment for some childhood cancers can last up to three years. Kids are absent from school for a significant period of time, parents quit their jobs or put their careers on hold, siblings’ lives are disrupted. The intent is to provide the opportunity to Ontario families impacted by childhood cancer to pursue a post-secondary education in the welding field.
“These scholarships will open new doors for our survivor population and increase their ability to achieve personal and financial independence,” says Dr. Mark Greenberg, Senior Adviser, Policy & Clinical Affairs for POGO. “What many people don’t know is that the impacts of childhood cancer don’t end when your child is cancer-free. As many as 60% of survivors will face long-term complications as a result of their disease or the treatment that saved them. Treatments that affect the brain during the critical developmental years, along with the amount of school many kids must miss, can have a profound effect on the learning and employment attainments of young survivors. POGO counsellors work one-on-one with childhood cancer survivors to help them set attainable career goals, develop a plan and seek out appropriate opportunities that will help them achieve success. It is our pleasure to embark on this new partnership with the CWA Foundation.”
“It’s a true pleasure to help support POGO in providing funding to students who have experienced childhood cancer to pursue their dreams of getting into the welding profession and truly succeeding,” said Deborah Mates, Executive Director of the CWA Foundation. “This partnership is unique and I’m looking forward to hearing the success stories. The Foundation is here for partnerships like this and further reiterates our commitment to the Canadian welding profession.”
For more information about how to access the scholarship, please contact Clark Vallis at email@example.com.
*Participating Ontario colleges include:
It started when I was on a youth adventure trip in Hawaii. Three weeks in, I got sick on a 12-mile hike to our camping destination. When I was still sick a week later, the doctors in Toronto tested for infectious diseases and the mono virus. I also had a chest x-ray to test for pneumonia. That is when they discovered it: a mass in my esophagus right near my trachea.
There are all kinds of terrifying things about getting a childhood cancer diagnosis. I had never even spent time in a hospital before and I had to have surgery right away. Chemotherapy was the worst experience of my life. They put me on steroids which caused my face to get fat and I felt angry all of the time. And when they told me that I would have to meet with a fertility specialist, that definitely freaked me out.
But there are also the trials and tribulations that come with being 14 years old. I was worried about my social life and missing out on my high school experience. As a teenage girl, the thought of losing my hair was obviously a huge concern for me. In fact, I did lose all of my hair… and my eyebrows and eyelashes. My leg hair completely fell out. I felt naked and unprotected. My wig became, and still is, part of my ability to feel somewhat normal, but probably the biggest contributor to my emotional well-being was how supported I was by my friends and family.
Both my parents and my younger brother and sister were around me all of the time. My aunts, uncles and cousins visited often and they became “my posse.” And at least one of my friends from school was with me during every chemotherapy treatment. I never felt alone and I realize how lucky I was. Many families need to travel for treatment—to Toronto, Ottawa or one of the five big cities with a major children’s hospital. I saw lots of kids in treatment with just one parent sitting beside them while the other was far away. Young kids and teenagers separated from their friends and siblings. I’m sure it was a very isolating experience for them.
That is why I agreed to be the keynote speaker at the upcoming POGO gala to benefit kids with cancer. Funds raised will support POGO’s mission to ensure all children with cancer, and their families, have equal access to the best care—no matter where in Ontario they live.
I hope to meet you all at the event on May 7th, taking place at the Liberty Grand Entertainment Complex in Toronto (you can find out more here: www.pogo.ca/gala). If you cannot make it, I hope you will consider showing your support by making a donation to my campaign to support families.
Thank you so much!