Join us for this very special podcast on Mother’s Day as we talk to mom Lisa about her experience being a caregiver to her two sons, Matteo and Nicco, while they both battled cancers at very young ages.
In this unbelievable story, Lisa talks candidly about her experience when Matteo, who is turning 14 years old next month, was diagnosed with bladder cancer when he was only 16 months old. Matteo would then have his bladder removed when he was 2 and a half years old after scans showed that his bladder cancer had become very aggressive.
“I found out from a friend that works in the surgical unit at the hospital that 21 surgeries were cancelled the day that Matteo had his bladder removed,” recalls Lisa. “They wanted as many surgeons as possible to be available during the surgery because no one had done this type of surgery on someone so young.”
She would spend more than 4 years in and out of the hospital with Matteo, during which time she also had second son (and third child), Nicco.
In a shocking turn of events, Lisa shares that Matteo had just finished his treatments and protocol when, 6 months later and at the age of 2, Nicco was diagnosed with leukemia. Nicco’s protocol would last almost 4 years and by the time he was finished, Lisa had spent a total of 8 years supporting her sons and advocating for them to get the best care possible.
She talks openly about fighting for controversial drugs that Matteo’s doctors’ thought were too dangerous for a young child, despite them telling her that no child could finish such an aggressive form of treatment without dying.
“We almost gave up,” says Lisa. “He hadn’t eaten food in 48 days and was in renal failure and we were so scared that we were losing him. He was in so much pain and we couldn’t access the drugs that we thought would help him. We decided that we wanted to preserve his quality of life rather than the quantity of life.”
It’s heartbreaking to hear Lisa talk about how close they came to stopping treatment, and the doctor that threatened to get the courts involved because, according to them, the decision she was prepared to make was “based on emotions”.
“It’s hard when you’re dealing with a doctor who probably doesn’t have children,” says Lisa, who has been a nurse for 30 years now. “When you’re going through that, you don’t have any other job but to keep your child alive and then no one will prescribe the drugs that you think will help. What are you supposed to do?”
Lisa also talks about what it was like for her as a young mom and the anxiety she faced as she juggled spending full days in the hospital with Matteo, dropping off and picking up her oldest child and daughter Jayden at daycare, and then rushing home to breast feed Nicco. “One of us still had to work and pay the bills,” she remembers. “My husband would work all day and then go to the hospital to be with Matteo so that I could spend time with our other children at night. How would I take care of myself during all that?” Lisa wonders, as she talks about her anxiety, panic attacks and the medication she took for years just to cope.
Lisa’s piece of advice for other caregivers or mothers going through something similar is that it’s a nightmare that you will get through, adding that, “You never know how strong you are until you have no other option – you’re stronger than you think.”
Be sure to listen to the podcast and don’t miss the special guest that makes an appearance part way through the podcast – another bladder cancer patient with an ostomy pouch that helped turned things around for Matteo and helped him understand that he wasn’t alone.
This podcast is hosted by Tawny Barratt, Director of Communications at Bladder Cancer Canada.
There are currently 80,000 Canadians living with a bladder cancer diagnosis and 12,000 more will be diagnosed this year. At Bladder Cancer Canada, we are doing everything we can to increase awareness of this devastating disease to as many Canadians as possible – including this podcast that we created for Bladder Cancer Awareness Month.
Bladder Cancer Canada’s mission is simple: To support patients, increase awareness, and fund research. Please join us in making our vision a reality – a world where bladder cancer is just a memory. If you enjoyed today’s blog/podcast, help us make a difference – please consider making a donation today.
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