LAC LA BICHE, ALBERTA - After moving to the community to start a new life, welcoming their first child into the world in 2019 was a joyous experience. But just six months later, Jacob and Bridget Marfo’s world began to change.
Without warning or other symptoms, their son Ezra began to suffer from high fevers. At first, the couple thought it was just that, a fever. But after repeated visits to doctors, Ezra was diagnosed with a rare form of Acute Myelogenous Leukemia (AML).
“There was absolutely no signs that he was sick he was just a normal kid. One day his temperature was very high…” said Jacob, and a few more doctor visits lead to the very scary news that Ezra would need to be airlifted to the Stollery Children’s Hospital in Edmonton.
“Everything was all so confusing and difficult to absorb and the more we tried to ask ourselves, why,” he said, telling his story so that it might help others.
More than a year after Ezra’s treatments began, Bridget and Jacob say their son is a fighter. His determination, along with the support of family, friends, the municipality, experienced healthcare professionals and the Ronald McDonald House Charities (RMHC) continue to play integral parts in the ongoing battles and milestones.
Looking back to when they first were told, Jacob said he had no idea how much they would rely on those supports and his own family’s strength.
“At first, we thought the treatment would be short-term so there was not much worry. However, after we got to know the potential length of his treatment, the level of pain and stress went up,” he said, explaining the rarity of the disease and the treatments needed. “The phenotype that he has is called RAM…It’s not common for someone to have that, and since then he’s been going through a lot of procedures” in cancer treatment facilities in Edmonton and Calgary.”
For the new parents, the last 18 months have seen many of Ezra’s first life experiences all take place in hospitals, said Jacob.
“He learned to walk in the hospital and run in the hospital. Most of his life activities were all done in the hospital. He was crawling at home but when he had cancer he couldn’t crawl again.”
His progress with movement again began through physical therapy. Through those sessions, Ezra has gained support to move his body over time, said his dad.
The milestones, he says are celebrated and balanced with the many challenges, and obstacles throughout his treatment.
With consistent rounds of chemotherapy and medications that cause severe side effects, the 18-month-old’s journey has become difficult, even affecting his ability to eat regular food, Jacob said.
“Whenever he swallows, he throws up. He is on a lot of medications to minimize that but he is being fed through (a) tube through the nose” for up to 14 hours a day, which also limits his ability to move, said Jacob. “He normally wants to roam, but he’s stuck in that spot for 14 hours often.”
As Ezra started to improve at the start of the year, the family thought they would be discharged from Calgary’s Tom Baker Cancer Centre. They said his bone marrow tests were showing no levels of leukemia. Unfortunately, Ezra contracted COVID-19 shortly after, forcing doctors to delay treatments to focus on recovering from the virus. After a four-month delay in cancer treatments as he fought the COVID virus, the leukemia progressed.
“He was in isolation, we don’t know how he got it…I can’t say that’s why the cancer came back but his leukemia levels were zero when they ran bone marrow tests,” said Jacob, explaining that two of the three tests taken before he contracted COVID showed no signs of the leukemia, but the third test, taken after, came back positive. “We were all excited, if the third test came back zero we would have been discharged from Calgary back to Edmonton, but then they paused it because he had serious COVID….When your platelets are super low it’s dangerous to do any procedures.”
Financial concerns and support
As the treatments continued, so did the financial and emotional stresses. Travel, accommodations, some medical costs ... it was a big challenge, says Jacob. But after connecting with social workers about their situation, support was not too far away with the Ronald McDonald House Charities (RMHC)
RMHC has supported more than 436,000 families who have had children needing vital medical attention for over 40 years with various support and accommodations across Canada. Through the charity, the Marfo family was able to receive living arrangements in both of the RMHC’s Edmonton and Calgary facilities as well as meals, and transportation to and from hospitals for over 215 days.
"We would have gone bankrupt as hotel accommodation was the only option available to us in both Edmonton and Calgary. We might probably have sold our vehicle to pay for accommodation. At some point also, I thought about staying in my vehicle and then finding a place to shower,” said Jacob.
The charity has been able to alleviate the financial pressures while they focus on Ezra’s treatment.
Fortunately, Jacob also received support from Lac La Biche County, where he works in the Environmental Department. Since the diagnosis he has been able to not only keep his job and work remotely right next to his son but also receive direct support from his boss; the county’s Manager of Environmental Services, Molly Fyten.
“She's been exceptionally helpful to us and I’m very grateful to work with her. It’s not often that managers call to check on you, or get you the things that you need, but she has been there for us since day one,” he says which has encouraged him to return and give back to the local community.
“I’m not going to move for any reason,” he says even though treatment centres for his son are far away. “I will come back there and work in person and support that county that has been there for me,” he said.
Ronald McDonald support
As the family continues to focus on Ezra’s treatment, Jacob says giving back to organizations like RMHC is so important to allow families going through difficult situations to focus on their children’s recovery. The houses have not only allowed them to connect with other families with sick children but to also feel supported by a team of excellent staff, he said.
“Ronald McDonald House Charities ... has left a positive indelible mark on my family’s cancer journey.”
On May 11, the charity will be celebrating McHappy Day; an annual event where all McDonalds’ restaurants across the country support the charity.
To donate visit the RMHC website directly or by visiting a McDonalds’ restaurant. Additionally, this year, the charity is working with an apparel brand based in Ontario called Peace Collective which released a McDonald’s-themed clothing collection. A large portion of those proceeds will go to supporting the RMHC.
“I appreciate McHappy Day and other fundraising activities more. I know that the funds are going to help families like mine who are in need. The funds are for a great cause and needs to be supported,” said Jacob, who continues to appreciate all of the support as he and his wife continue their journey with Ezra.