Jacob Lesperance was first diagnosed with a malignant brain tumour in May of 2015 and after a period of remission, he and his family are once again facing the reality of his terminal illness.
Doctors first diagnosed Jacob’s medulloblastoma, the most common cancerous brain tumour in children, when he was 14 years old.
“It was a Mandarin orange-sized brain tumour in the back of the skull and the medulla area, and I was told he might not make it to Saskatoon on the plane ride [to the hospital],” said Michelle Lesperance, Jacob’s mother.
After two surgeries, where doctors were able to remove the cancerous tumour, Jacob underwent chemotherapy and radiation to treat his cancer. His cancer-free remission period lasted two years, but in April of 2018, doctors discovered that Jacob had developed two more tumours in his brain and all the way down his spine.
“They sent his file to Toronto Children’s Hospital because the way it had metastasized had never been seen before. It was unprecedented,” said Michelle. “His next MRI showed he had another four, so six [tumours] by the end of May.”
At that time in 2018, Jacob received a terminal diagnosis of three to six months to live.
Now, two years later, Michelle and her son have tried a few different kinds of palliative therapy to help Jacob with his symptoms and the concept of ‘management’ has become their daily routine.
The decisive point of Jacob’s story occurred earlier this spring, when he was scheduled for an MRI but the COVID-19 pandemic struck and cancelled his appointment.
“He’s such a humble and caring person that when they phoned to redo it, he said, ‘Mom, we already know they’re growing so maybe we should let somebody else have the spot,’” said Michelle.
But shortly after, Jacob’s symptoms worsened — including nausea, throwing up, dizziness, headache and blurry vision. Following an emergency MRI on July 7, it became clear that Jacob’s cancer had spread even further, with at least six new tumours on his spine and one in the eye chasm.
The news was upsetting for both Michelle and Jacob, especially as doctors seem to have few answers for the family on what to do next.
Jacob’s entire journey has been very difficult for his entire family, including his five siblings, but Michelle said her son hasn’t lost any of his caring personality.
“When he first got cancer, he said he was glad it was him and not any of his other siblings, which is such a testament to his character,” said Michelle. “And in the recovery room after his surgery, he offered this girl who had a seizure his cookies, and that’s [who he is]. He’s a great kid.
“He really loves his music, from all different eras. I’ll go into his room and he’s listening to the Beatles, he has such a range of different music,” she continued. “He’s very intuitive, a kind and caring and loving kid.”
Just about two years ago, Jacob (R) was invited backstage at a concert for his favourite band, Three Days Grace, where he was able to join lead singer Tommy Vext (L) of the opening band Bad Wolves onstage. (supplied by Michelle Lesperance)Michelle’s close friend Erin Curry decided to start a GoFundMe for the family to help with the financial strain that Michelle is feeling during this time. With COVID-19 limiting other types of local fundraisers, Michelle feels like the online fundraiser is a blessing.
“It’s tough because it’s hard to ask people for help constantly,” said Michelle. “And it’s hard to get the word out there, and with everybody going through what they’re going through [with the pandemic], it’s difficult.”
COVID-19 has been tough on Michelle’s family overall, although she was already living a life of isolation long before the pandemic, as cancer patients like Jacob are immuno-compromised and very susceptible to illness.
“What everybody’s had to do [lately] is what I’ve had to do for five years to protect my son from a common cold,” said Michelle. “I was vinegar-ing tables and hand-sanitizing grocery carts before it was cool.”
The GoFundMe goal is $5,000, with just over $3,000 raised at the time of publishing. Michelle said that the funds raised will help her take care of her family while she provides end-of-life care for Jacob.
“That’s the reality of terminal brain cancer. You have to try and keep your spirits up because it's very difficult to mourn the loss of somebody who is still here. You want to provide the best end-of-life care that you can, but when you can’t do anything financially, you’re so limited,” said Michelle.
“Even $10 is helpful right now [and ] there’s end-of-life arrangements to take care of as well, [so] there’s a few thousand dollars worth of things I have to take care of after too,” she continued.
Michelle has already been on the receiving end of some Moose Jaw kindness, with people helping her out with donations — including various gestures of support from Band City Auto Sales, Hillcrest Church, and Main Street Dental — and she’s grateful for every effort.
“There’s been a lot of people with little gestures, but they’re actually huge and they’ve made a great impression to me, that stranger would help a kid so much,” said Michelle. “I wanted to thank everyone who has ever donated, either directly or indirectly.”
A post for Jacob in the national Hearts in our Window Facebook page recently blew up as well, with several people from Canada and the U.S. actually sending Jacob cards of encouragement to lift his spirits.
For those wanting to offer help without involving the Internet, Michelle said she really appreciates gift cards to places like Wal-Mart or Moose Jaw Co-op, as she can use them for groceries and gas for her family. Xbox Live gift cards are also a great idea, said Michelle, as Jacob is an avid gamer.
“He plays with my daughter. She’s seven [and] she’s basically spent her whole life with him. He’s taught her Minecraft and they’re always gaming together or singing together,” said Michelle.
Facebook is the best place to reach out to Michelle, she said, and every message of support is more than welcome as her family struggles through Jacob’s situation.
For anyone interested in donating to the GoFundMe campaign for Jacob and his family, titled Family in Crisis, it can be found here.
