KAWARTHA LAKES – When Sarah Patterson’s daughter was diagnosed with Leukemia in 2015, she was hopeful that the outpouring of support would continue for the long term.
At the age of three, Makayla was showing signs that something was terribly wrong, no energy with a need to sleep most of her days away. After being diagnosed, her and her family has had a long and difficult path, full of various diagnoses, unknowns and sadness.
Mikayla started various medications for the next two and a half years and was in remission by July 2017.
“That was a lot and once her cancer was over, we tried to go back to normal,” said Makayla’s mom, Sarah Patterson. “Over that period of time I was off work for about eight months, once her cancer journey was over, I still missed a lot of work with appointments, back and forths and follow-ups.”
And even though their daughter, now 10, had entered into remission, they never expected what was to come.
“After she went through what she did, we saw a withdrawal from family and friends,” said Patterson.
Eventually, in 2018, Makayla was taken for a neuropsychological assessment and later diagnosed with ADHD and autism.
“This was a whole other world of things to take on,” said Patterson. “Going through that, it was so much shock and I didn’t know what to take of it all, she is who she is, nothing we can do to change it.”
But the hurdles that little Makayla would face didn’t stop there, in 2018 her mom and dad noticed that she was suffering from severe, continuous headaches. After several investigative appointments, it was discovered that she had suffered a left frontal lobe brain injury, which had caused a stroke, likely, from years of chemotherapy.
“By the end of September 2019, we noticed significant issues, she was spacing out, she wasn’t listening, I was sure there was something wrong,” said Patterson.
The symptoms quickly worsened and after several hospital visits in various locations, Makayla ended up in SickKids Hospital where she was diagnosed with focal epilepsy and according to Patterson, the seizures were all linked to the part of her brain that was damaged.
The last two and a half years since the retractable focal epilepsy diagnosis, the Patterson family has been inundated with appointments, prescriptions and more unknowns. Recently, Makayla has been placed on CBD oil, medical marijuana, which has been life-changing, drastically reducing the number of seizures that occur.
“These are the early stages, CBD, there is so little known about it, it’s hit and miss, test and try, we are already on a pretty good road so far, hopefully it gets better from here,” said Patterson.
And while support was vast when Makayla was diagnosed, according to Patterson, that dwindled quickly once her daughter approached remission.
Courtesy – Sarah Patterson
“When the cancer was gone, so was the support,” she said. “There was a lot of support in the beginning, a lot of people rooting for us.”
Patterson noted that Pediatric Oncology Group of Ontario, POGO, gave tremendous support for various needs including transportation, lunches, hotel stays and more but as soon as the cancer was in the rear-view, the funds and availability came to a stop, she said.
And while Patterson doesn’t always have a vehicle available and is also unable to drive in the city, getting to appointments can almost be impossible, without support.
Wheels of Hope provided transportation during treatments but once Makayla was in remission, that support also came to an end.
Out of desperation, Patterson reached out to Ontario Parents Advocating For Children With Cancer, OPACC, who was able to connect her to various local outlets that could support her.
OPACC was founded in 1995 by parents of children with cancer with a mission to support parents and families of children diagnosed with cancer in Ontario. Their programs and services are free for families to access and are offered throughout Ontario. They include:
- Parent Liaison program offering in-hospital (at SickKids and Credit Valley Hospital) and virtual peer-to-peer, psychosocial support by trained facilitators who are also parents that have had children with cancer. They offer families a listening ear from someone who understands first-hand their situation, as well as information and resources on hospital and community services (you can seewww.opacc.org/parentliaison for more information).
- Community-based childhood cancer parent support groups in communities around Ontario and training for new community group facilitators. We currently have groups established in Niagara, Kitchener-Waterloo, Cambridge, and London but are always looking to expand to other areas.
- Financial support through our hospital parking program which helps families pay for these costs and gift card program distributing gift cards for gas and groceries to families who need them.
According to Administrator for OPACC, Sarai Porretta, families of children with cancer often face financial difficulties especially with a parent having to forego employment to provide care for a sick child full time.
“In one study, over 50 percent of mothers of children diagnosed with cancer reported relinquishing their employment. Caregivers typically lose 23 per cent of their workable hours and parents face higher loss of income and out-of-pocket costs as they must accompany their child to hospital or appointments both during and after treatment.” She said. “This all puts a big financial strain on many families, on top of the economic barriers currently being experienced due to COVID. There is also a big need to help survivors and their families financially as many financial aid programs end once active treatment is over, yet children must continue going to follow-up appointments for years afterwards.”
And Patterson falls into that 50 per cent as she was recently terminated from her job in August. While her employer did not specify why, the number of workdays she had missed was discussed.
“Workplaces, being at work, they supported me in the beginning, whatever you need, but once it was done, it’s like ok everything goes back to normal,” said Patterson. “I can’t say why, they terminated me without cause.”
Porretta encourages any families going through a similar experience to contact OPACC.
“If a family is in need, first of all know that they are not alone and there are resources that can help. They can contact an organization like OPACC and if we can’t help financially ourselves, we can connect them to other organizations that can hopefully provide assistance,” she said. “An organization can help you reach a much wider network than you can on your own by using its networks of organizations and other member families that want to help, our social media presence, and leveraging community support that may be unavailable to an individual.”
According to Porretta, families should reach out to OPACC for assistance not just financially but also socially to connect with other parents and their Parent Liaisons who understand what they are going through, access to educational virtual webinars with guest speakers on a variety of topics of interest, community support groups, and more.
“We are all about making connections with parents and letting them know that they are not alone. That is so important to know, now more than ever. We are here to help,” she said. “For people in the community in general who don’t have a child with cancer but want to help, we are always in need of donors and businesses who may want to hold a third-party fundraiser for OPACC,” she said. “OPACC receives no government funding and all funding for the development of our programs, services and special events comes from the donations of generous organizations, businesses, foundations, and individuals.”
OPACC also has various volunteer opportunities such as sewing pillowcases for kids in hospitals through their Comfy Cases program, being a guest speaker at a virtual presentation, joining their Board of Directors, volunteering at events, and more.
For more information visit www.opacc.org.
And for other families going through a similar life-altering diagnosis, Patterson says take all the support you can get while it is available.
“At the beginning we said we can do it, we can manage and we kind of shut out the world but take any support, any help that people are willing to give, take time for the family and mental health as well,” she said. “She (Makayla) is definitely struggling mentally and emotionally; we talk her through everything and give her the support we can but it’s not enough. Never stop advocating for your children, parent instinct is always right.”
July 2022 will mark five years cancer free, deeming Makayla a cancer survivor!
