Anyone who has had a loved one diagnosed with cancer wants the same thing: survival.
But for many adult survivors of childhood cancers, survival has come with a life of both physical and emotional pain and a lack of support.
Karalyn Bay was in Grade 1 at Coldstream elementary school when she was diagnosed with a brain tumour.
“Before age two I would drag my foot and my balance was off,” said Bay. “They treated me for an anxious stomach and when that didn’t help, they treated my ears. At the age of four my speech was slurred and at times I looked like a staggering drunk.”
Bay and her family returned to her birth place, Victoria, where she had several weeks of treatment at Royal Jubilee Hospital: surgery to remove the brain-stem astrocytoma and extensive radiation to the back of her head.
Now 44, Bay may have survived her cancer but she has been left with nerve damage in her face, weakness on her left side and deafness in one ear.
The problem, said Bay, is that for many childhood survivors of pediatric cancers, the treatment was all about cure, which meant extremely high doses of radiation.
“They probably thought what they were doing was right, but we are the ones who paved the way. We were over-radiated.”
Bay was left with facial nerve damage that resulted in a facial bells palsy and weakness on her left side.
“My self-esteem was also very low, as I was constantly teased and friendless,” said Bay. “Many years I’ve struggled alone with so much pain and unanswered questions.”
It was in her early 20s that Bay’s physical problems escalated to the point where she could no longer live independently and take care of herself.
“There were no answers, just guessing games and physical torture. I can see, I am still able to process my thoughts. Some days are good, some are bad. You have to have hope. People need to have a lot more compassion. A lot of people give up sharing and keep their mouth shut, but I have been quiet for too long.”
But Bay is beginning to get the answers she needs, and more importantly, the support she needs, thanks to the Pediatric Cancers Survivorship Society, which was formed in May and founded by parents of adults who had childhood cancers. There are now more than 100 families registered.
The families have come together to raise awareness of late effects of original treatment experienced by pediatric cancer survivors.
This emerging population of childhood cancer survivors is unique in that they are living beyond their expected life expectancy and are at the forefront of survival rates. Many survivors are unaware of late effects of their original therapies.
According to the society, late effects are wide-ranging and can include re-occurrence of cancer, infertility, cardiovascular disease, mental illness, psychosocial disabilities, physical disabilities, osteoporosis, other systemic diseases, which can occur 10, 15 or 20 years post-treatment
The society is advocating for improved quality of life, a “one-stop shopping” multidisciplinary wellness and holistic clinic and improved seamless transitions from pediatric to adult care.
“I had been searching for so long and to be connected to this group has been wonderful — there are so many of us suffering, and the problem is probably more vast than they think,” said Bay. “I feel like I need to be a voice to so many others who are suffering.”
Carolyn Vacheresse is one of the founders and president of the society and knows all too well what Bay is going through. Her 20-year-old daughter, Danielle, was diagnosed with cancer at 18 months old and has been living with the results of her treatment ever since.
“But what choice do you have, when at the bedside you’re told your child has only got two days to live, you either do it or you don’t do it,” said Vacheresse, who lives on the Lower Mainland. “It’s been one thing after another for 20 years.
“It’s been a horrible experience especially because my daughter’s needs are so complex; at Children’s she is considered one of the most complicated.”
Profoundly handicapped, both physically and mentally, Danielle is in the process of being transitioned out of the care of B.C. Children’s Hospital.
One of the issues, said Vacheresse, is in finding a family doctor to take on her daughter’s care. She was in luck when she found a physician who had just moved from England.
“He said ‘I’ll take care of her,’ and then I was put in touch with Dr. Karen Goddard (B.C. Cancer Agency) who told me about a group of parents interested in talking and I said yes.
“I got together with other parents and we started talking and started gathering names of members; and so that’s how we sort of got going, and it’s been a crash course in late effects.”
Patti Byron is senior director of specialized pediatrics at B.C. Children’s Hospital. She said patients are followed until at least five years post-treatment and up to and including their 18th birthday if they’ve been followed by a team.
“In practice many BCCH patients are followed until their late teens or early 20s because they are still at risk for late effects and there is very limited access to medical expertise in this area,” she said. “We do have a transition/ follow up nurse to help us transition the patients to adult follow-up.”
After transition from Children’s the patients who are at the highest risk for late effects (usually only those who have had radiation therapy) are transferred to the BC Cancer Agency for ongoing surveillance.
“Patients who did not have radiation are transitioned back to their GP with recommendations for ongoing surveillance and management,” said Byron. “For the last five years we have been keeping the patients on ‘letter follow-up,’ informing them of the need for follow-up from previous treatments as a child and we can keep track of them and they can contact us if they have problems.”
BCCH sees 120 to 140 new oncology patients per year from all over B.C. They may receive some of their treatment at other hospitals but the overall management is always through BC Children’s hospital. Overall there are about 3,500 survivors of childhood cancer in B.C.
Byron said in the last 30 years, BCCH has been able to decrease the doses of radiation in children, using more chemotherapy, but unfortunately radiation is still necessary to cure some diseases, especially brain tumours, and these are usually the patients that have the most severe late effects.
She said BCCH has known about late effects for many years and was one of the first hospitals to create a follow-up program for its patients in the early ‘80s.
“Parents these days are definitely told of all of the known late effects before treating their children,” said Byron. “Many of these problems were not known about 40 years ago and so they could not be warned about them. These newly identified late effects are what led to our ‘letter follow-up.’
“As more research is done in the field of late effects we learn more and can better inform the patients and parents.”
For Vacheresse, leaving the nurturing care of Children’s has been a shock for everyone in her family.
“I’m leaving a nurturing group who has looked after us with kid gloves, who have worked hard to keep my daughter alive and keep us all sane, we both worked together in keeping Danielle well and at the end of the day to throw you out at 19 to go and see your GP, how can a GP understand and grasp all the late effects?”
In British Columbia, the Provincial Health Services Authority (PHSA) operates the pediatric cancer care system through the BC Cancer Agency (BCCA) and BCCH.
“We recognize that patients have needs beyond their initial cancer treatments and we are committed to developing strong mechanisms to support the survivors of cancers,” said Byron, adding that the BCCA has developed a survivorship program that is dedicated to improving the well-being of those who are living with and beyond cancer.
“Survivors need a primary practitioner or a general practitioner who can provide care and advice and seek specialists depending upon the needs of the patients,” she said. “Most of the former patients have transitioned into the adult care system and have their own family doctors and health care professionals who are advising them of their long-term care needs.
“We have heard from family physician representatives that they feel they can manage these patients well.”
Bay considers herself one of the luckier survivors. She graduated high school with honours and went on to complete the legal secretary program at Capilano College in North Vancouver. She also kept busy with piano and swimming lessons.
“That was the best thing for me; even later in life, for dexterity and hand and eye coordination. There have always been physical problems, and walls to climb, but I was a fighter and worked hard.”
Bay worked for a number of Vancouver law firms and then worked as secretary/receptionist at the Vernon Health Unit.
Eventually, with declining health, lack of energy and chronic pain, Bay made the difficult decision to quit her job. Shortly after, she received help from the Employment Enhancement Centre and was approved for some disability coverage with the B.C. government.
“I’m thankful for the income assistance but is has been no picnic, as it is nominal.
“My arms were taxed with pain that was stemming from my neck and I lost the use of my hands,. After many diagnosis guesses they named it a repetitive strain injury. Not satisfied and not one to give up, I continued to fight for answers and relief.”
Bay finds relief through massage and physiotherapy and credits Vernon physiotherapist Bob Powls for helping her to regain some of her strength and decreasing her pain.
“Just recently I’ve read that hands-on physio and massage is the only treatment that will slow down the neck and shoulder atrophy from radiation, as there is no cure.
“I was adamant that my weakness, chronic pain, fatigue, and numerous growing ailments were due to the childhood surgery and the extensive radiation given to the back of my head. Yet I was having difficulty getting help from authorities, and once again I was denied any help for my plight.”
Once Bay discovered the Pediatric Cancers Survivorship Society, she felt as though someone had literally rescued her from the brink and within a few months she had an appointment with Goddard at BCCA.
“She set up all these appointments for me, including an MRI, which I had not been able to get through my family doctor. I was reassured that I’m not crazy and that most if not all of my ailments are ‘late effects’ from being over-radiated as a child. Even though I still have to live with debilitation and pain it has brought comfort and even peace knowing that someone truly understands and cares.”
Some days, the fatigue overwhelms her and all she can do is rest.
“Doing anything and enjoying life has become an extreme effort, but I try to be cheerful and encouraging around others. I am so thankful for my faith and personal relationship with my savior Jesus Christ. He has been my anchor through this stormy life.
“I have always been a giving person yet it is getting harder to go out and shine, smile, and share. I have had to learn to let go of so much and not fight against my body. There are times when I just have to allow myself to feel my emotions and sit down and cry.”
Bay gets a lot of family support but with her mother turning 80 next year, she worries about what the future will hold.
She’s in constant pain but strives to maintain a positive attitude. Her dog, Melody, helps. So do the youngsters to whom she now teaches piano, as her hands no longer work well enough to play herself. And a few years ago, she started taking ballroom dance lessons.
“I need to keep moving even if it’s painful, so every Tuesday afternoon I go to City Dance for a private lesson. Jens, my instructor, always makes me laugh and I come out of there feeling happy. And even though I cannot play the piano much anymore, I can still teach and I love teaching piano.”
But while she lives with pain and frustration, Bay wants to help others living with the late effects of childhood cancer.
“If you are a survivor, we want to hear your story. We are human beings and as survivors we live afflicted without a cure.”
For more information on the Pediatric Cancers Survivorship Society, contact Vacheresse at firstname.lastname@example.org.