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how i care for cancer: love and gratitude in unlikely places

for family caregivers, cancer changes almost everything – except the realization that love is what keeps you going.

by karen hawthorne

feb 2 2024

9 minute read

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sheena king and john dumaresque, left picture, and renée, ava and delilah, right picture, never gave up on each other as a family through their journeys with cancer. supplied

sheena king thought she’d given her dad the last hug she’d ever give him. renée meyer faces the constant uncertainty that her daughter’s tumours could become malignant and end her young life.

for family caregivers, cancer changes almost everything – except the realization that love is what keeps you going.

***

sheena king and john dumaresque

john and audrey dumaresque raised their family in the tiny coastal fishing village of forteau in southern labrador. john was a fisherman like his brothers and his wife had a job in the local fish processing plant, both with a strong work ethic and appreciation for family and friends. there was always a lot of laughter in the house. sheena, the youngest of the three kids and the only girl, says she has always been “dad’s girl.”

“he’s my hero. he’s just a good person, all about the golden rule. he tells us all the time, ‘do unto others as you would have them do unto you.’ that’s dad. and he’s funny as anything. you don’t know really what he is going to say next,” says sheena king, 50, who wants to share her dad’s story because doctors have called him ‘the miracle man.’

in early 2022 still in the pandemic weirdness, her dad, now 78, started to slow down, something the family thought might be just aging. he had always been active, ice fishing in winter, long walks, chopping wood, hunting. he loved the outdoors. “he just wasn’t himself; we couldn’t really put our finger on it, but he just wasn’t the same,” king explains. she had moved from her hometown to st. john’s, nfld., about a 12-hour drive from her parents, but is constantly in touch with them with daily calls and the family texting chat.

“my mom knew there was something wrong. she started telling us that he’s not eating a lot. my dad’s always been a really good eater, whatever mom puts in front of him.” he was back and forth to the local clinic and for tests at the closest hospital, but nothing was found for about six months and finally he was referred to the larger hospital in st. anthony three-and-a-half hours away. her dad had been losing weight and strength, along with his appetite, and the family was certain it was serious.

a biopsy led to a diagnosis: he had stage 4 renal cell carcinoma, kidney cancer, which had spread to his lungs and liver.

kidney cancer is the 10th most common cancer among canadians, with an estimated incidence of 8,600 canadians diagnosed with kidney and renal pelvis cancer in 2023. about 1,900 people will die from kidney and renal pelvis cancer in 2023, according to the canadian cancer society . it’s more common in men than women, typically developing in people age 45 and older.

“it was pretty bad. we were devastated,” king says. in some ways, the family wasn’t surprised to hear it was cancer, but they were thinking bowel cancer because he couldn’t eat. also, king herself has crohn’s disease, an inflammatory bowel disease that causes chronic inflammation of the gi tract. she’s also been on dialysis for related kidney failure for nine years, so she is no stranger to health issues. “i was thinking, what do we do now? how do we fix it?” she says of putting on a brave front. “but i was scared and i felt helpless.”

king and her husband had her parents come stay with them after a consultation for her dad with an oncologist in st. john’s. but it all felt more like his end of days and she was preparing for the final goodbye. the doctor told the family that her dad was very sick. “he said, ‘i don’t know if there’s really much we can do. but i have this immunotherapy. i’m going to be really honest and i don’t think it’s going to work. but we’ll take a shot in the dark.’”

they moved a bed in their home to the main floor because her dad was so weak, down about 60 lbs, and in a wheelchair by this point. he had his first treatment in st. john’s in august 2022, trying to keep hopeful. immunotherapy works by activating the immune system to find and fight cancer cells. he didn’t show any signs of improvement, and a few weeks later he seemed to be getting worse. it was time for a heart-to-heart conversation. “i sat down with dad and said, ‘now this is, this is your life and this is your choice. we’re going to do whatever you want to do.’ he told me he wanted to go home to labrador. that’s his heaven on earth.”

he couldn’t easily travel and was flown home through the support of the canadian cancer society. king’s mom made him comfortable – “i think she’s half the reason why he’s still here,” king laughs. “she didn’t have any intention of letting him go.” after a couple weeks, though, he started to improve. he slowly started eating again. the family arranged for his next immunotherapy treatment in st. anthony and then he started regaining some strength.

“it was just incredible to see,” she says, and miraculous, according to his doctor. every night before he went to sleep, they would facetime so she could say good night and tell him she loved him. he was receiving immunotherapy about once a month and was well enough to come for new year’s to ring in 2023 with his daughter. now, as of january 16, 2024 his cancer is nowhere to be found except for a much smaller mass in his kidney that is not active at the moment.

king’s message to other caregivers is one she feels strongly about. include your loved one in their care plan if they can be a part of it. it’s their journey. “i said to dad, if you want to do this immunotherapy treatment, that’s your choice. we’ll sit with you and we’ll hold your hand and do whatever we can for you while we’ve got you here. and we’ll be devastated when you go. but this is your plan.”

this plan worked, reinforcing the family’s closeness and connection. “i couldn’t be more grateful for everything. i talk to mom all day long and ask about what dad’s doing today? we can hardly believe it. he was so far gone and now he’s back to who he was before, doing a little bit of hunting and chopping his own wood. it wasn’t his time to go.”

***

renée and ava meyer

there’s a beautiful photo of little ava wearing her bravery beads. each colourful bead on the string represents every finger poke, every chemo injection, every mri, every surgery of her cancer journey so far. she has three necklaces in total.

“ava continues to impress me constantly. she went through things that most adults have never had to go through. and yeah, she did it with a smile on her face. not once did this child complain or cry, or say ‘why me?’ she knows that she has tumours. she has one on her back right now, near her spine. she has one on her leg (a plexiform neurofibroma, which has a high chance of becoming malignant), she has some internal tumours. she doesn’t let it scare her. she doesn’t let it hold her back,” says renée meyer, the primary caregiver for her daughter ava, 13, whom she calls her hero.

the family’s “normal” is about living for the present and not dwelling on the uncertainty of the future of ava’s health. that’s often what childhood cancer requires, she says.

it all started early on when ava was extremely colicky as a baby. doctors reassured meyer that it was colic and gas. but when she screamed, it sounded like she was in pain. about six months later, meyer brought her to the emergency room for bronchitis and the onsite pediatrician listened to her concern over the café au lait birthmarks that seemed to be multiplying. she was sent to mcmaster children’s hospital in hamilton, ont. for genetic testing.

what came next was jarring. the life-altering diagnosis at age 14 months: ava was living with neurofibromatosis type 1, or nf1, a progressive genetic condition that causes tumours to grow inside and outside of the body. an mri revealed a brain tumour. meyer, now 36, was also pregnant with her second daughter, delilah, when she learned of the diagnosis.

ava’s brain tumour wraps around both of her optic nerves where they intersect going into the brain. operating would cause blindness. the best treatment was a low-dose chemo over 70 weeks to help stabilize the tumour when ava was about three. meyer took her daughter to see her ophthalmologist at the hospital before going to get her chemo and found out that ava had lost complete vision in her left eye.

“it wouldn’t even register with me,” meyer admits. “i was by myself at the hospital with her. i went to oncology. her nurse joanne is an angel. she looked right at me. she knew i was upset. she said, ‘listen, i’m going to go play with ava. you go get a coffee, go for a walk, collect yourself, and i’ll see you in 10 minutes.’ so i went and i had my moment and i dealt with it without ava seeing, which was great. and when i got back, i was able to be there for her during her chemo that day.”

chemotherapy involved a number of different syringes that got injected into her chemo port, which is a small, implantable device with a silicone tube that attaches to a vein. her port went right into the artery in her neck which would pump the drugs quickly through her body.

those days have left their imprint on meyer. “we would get up every friday morning, i’d feed her, i would put the patch on ava’s port to freeze it so that she wouldn’t feel it. usually my mom and my stepdad did a lot of the driving to mcmaster. i would always get ava a hot chocolate with whipped cream and sprinkles because the finger poke is easier when your hand is warmer.”

there are seven types of nf, with nf1 being the most common and characterized by brown blotches and abnormal growths across the skin and along the nerves. the condition affects about 1 in 3,000 people, says the canadian skin patient alliance .

a small number can experience seizures, and ava had five grand mal seizures when she was five years old. the doctors put her in a drug induced coma to stop them and try to figure out why she was seizing. the family was left with the reality that her seizures could not be explained other than 15 per cent of people with nf1 have seizure-like activity. thankfully, since that episode, ava hasn’t had another.

“i was kind of in robot mode through 70 weeks of chemo. after her chemo, we kept the port in for about a year-and-a-half in case the tumour started growing, it would be quick access. we wouldn’t have to wait for a time to get the port back in. once ava’s port was finally removed, i had my breakdown. that’s when i dealt with everything once i knew that she was okay.”

caregivers have a hard time putting self-care on the to-do list, so meyer realized she needed to process her emotions and just breathe. she knew it wouldn’t be an easy road ahead. for one, prolonged chemo use affects the immune system. when covid-19 struck, she says she panicked and moved her family to north bay to escape the city. now she runs a property management business.

ava did contract covid, where in her case, a high fever can lead to seizures, but she was okay. she continues to be monitored at sickkids in toronto and has yearly mris and follow-up appointments to discuss her health and any new treatments that could benefit her condition.

meyer’s very close with her two daughters and acknowledges how ava’s cancer has made her younger sister strong and independent.

“delilah didn’t get as much attention as ava. it wasn’t intentional, it was that ava needed the care. so that was a hard balance. delilah’s brought it up a couple times but we’re a very open family. i explained to her, ‘you know, you were okay. your sister needed more help.’ delilah totally understands it now that she’s older.”

and ava is doing well, ready for her second semester in grade 9 and considering a career in interior design. her advice for a family with a cancer diagnosis?

“be calm. be brave. breathe,” says ava. “be strong.”

karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto as a freelancer, and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

how i care for cancer: love and gratitude in unlikely places

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how i care for cancer: love and gratitude in unlikely places

for family caregivers, cancer changes almost everything – except the realization that love is what keeps you going.

sheena king and john dumaresque

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