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.
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.
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?
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.
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.
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.
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, 13 years later, a university graduate and am 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 brain tumour, 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 find school challenging (albeit a welcome one) and use special accommodations, like a note taker to help supplement my own notes in case I experience writing fatigue or a migraine.
Counsellors in POGO’s Successful Academic and Vocational Transition Initiative (SAVTI for short) 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.
SAVTI 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. Noah was recently accepted into the Masters of Management program at the Schulich School of Business at York University.
While the survival rate for childhood cancer is 82%, approximately 60% of these young survivors will experience long-term effects because of their cancer or treatment. The late effects that affect the brain and learning and cognition can range from mild to severe and can include cognitive impairment resulting in learning difficulties that can affect a young person’s success at school or in the workplace. Assistive technology is any technology that allows someone to use their natural strengths to overcome an area of weakness. Todd Cunningham explains that new technology exists to help with cognition, like reading and identifying important parts of the text. With artificial intelligence, the software can analyze a document and highlight the most important bits of information for the reader, cuing them to pay attention to that passage. Assistive technology reduces the cognition load, allowing you to pay attention to what’s really important and relevant.
Todd Cunningham, PhD, C.Psych is a psychologist with Ontario Institute for Studies in Education, University of Toronto, Toronto, ON. He spoke at POGO’s 2013 Survivor Conference: Life after Childhood Cancer where he presented these and other ideas.
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 POGO Supportive Care Clinical Practice Guidelines Program provides healthcare professionals in Ontario and worldwide with the best options for managing the side effects of cancer and improving the health and quality of life of children with cancer. These Guidelines translate the current evidence into recommendations for daily clinical practice. For example, in POGO’s most recent guideline on managing fatigue (published in the medical journal Lancet Child & Adolescent Health), physical activity is strongly recommended as a way to help ease this common and distressing symptom. It further recommends that physical activity should suit each patient’s specific needs, likes and abilities. The POGO Guidelines team based this recommendation—one of four—on research with adults that showed the consistent benefit of physical activity, and the universal availability, low risk of harm and low costs of fitness options. The fatigue guideline was developed by a multidisciplinary and multinational group of experts, together with childhood cancer survivors.
Supportive care helps manage cancer’s side effects
Supportive care is the prevention and management of the adverse effects of cancer and its treatment, which means managing the side effects of cancer and cancer treatment. Supportive care includes preventing and treating infections, reducing nausea and vomiting, as well as managing psychosocial issues, including depression, anxiety, and caregiver distress.
Clinical Practice Guidelines improve outcomes
Guidelines provide a way of translating evidence into clinical practice. Across clinical specialties, treatment according to guidelines has been shown to improve outcomes. Providing evidence-based supportive care for healthcare teams has the potential to optimize treatment outcomes, reduce suffering, and improve the quality of the cancer treatment journey for children with cancer.
POGO’s Clinical Practice Guidelines are internationally endorsed
In its short duration, the POGO Guidelines Program has been extremely successful. In addition to the newly released management of fatigue guideline, POGO has published six Guidelines. Five have been endorsed by the Children’s Oncology Group (COG). This means that links to the guideline recommendations are now embedded into the COG’s trial protocols. Endorsements by other organizations, nationally and internationally, include the Canadian C17 Network, the American Society of Pediatric Hematology/ Oncology and the Multinational Association of Supportive Care in Cancer.
POGO’s Clinical Practice Guidelines fill a void
POGO’s Clinical Practice Guidelines are incredibly important for healthcare teams because very few evidence-based supportive care guidelines exist that specifically focus on children with cancer. POGO’s Guidelines are informed by parents who rank the treatment-related adverse effects as most severe and concerning to their children, and by pediatric oncology healthcare providers who have identified topics for which guidance is most needed.