A four-year old from Vanderhoof who has had a battle with Wilms tumor, received a wish to go to Legoland from Make A Wish Foundation of BC and Yukon, in March.
Avery Togyi, son of Rhonda and John Togyi of Vanderhoof, had been diagnosed with Wilms tumor in 2017, and had successful treatments, but in Feb 2018 the cancer relapsed.
Rhonda Togyi said,”First round (in 2017) he was in the hospital until he was stabilized. Because the tumor grows really quickly and it was really big. His kidney is about the size of his fist and the tumor was two to three times bigger that that…He was in the hospital for a month until he stabilized.”
She said Avery was in Vancouver until end of Aug 2017, and his operation was right after his third birthday. She said the first time the tumor was discovered, “we were only in Vancouver for four months. So that was a little bit easier to manage. We didn’t know what we were getting ourselves into and it was over fairly quickly for us and we were back home.”
Togyi said even though they had to go back and forth from the hospital after the operation, it was easier to manage.
“And then the second time happened (Feb 2018) and the treatment is more intense. We had to be near the hospital when he was having his chemo,” Togyi said.
The Togyi’s have two children, Sebastian who is eight-years old, and Avery. She said her mom helped so Sebastian could go to school. Both of them said their jobs allowed flexibility in taking time off work. John was working at a gold mine and Togyi is working with SD91.
Avery’s name was put to Make A Wish Foundation of BC and Yukon after he was diagnosed the second time.
In terms of support, the Togyi’s said they have been very fortunate in every way.
“We had a really amazing social worker from BC Children’s who basically when we showed up the second time looked after every thing for us. So Oncology has two social workers that work with families and we have a parent advocate as well,” she said.
“And between those sources if there are expenses that come out of our pocket, they make sure to try and find a program or an option for somebody else or to get support that way. Because there are also incidental expenses of not living in your home community.”
During their time in Vancouver, the Togyi’s lived at the Ronald McDonald House BC, which offers rooms for families of pediatric patients who are 21 years old, or younger.
“At the Ronald McDonald House, we were very fortunate because three or four times a week, groups would come in and cook family dinners and often there were leftovers as well. So they would come over and cook a meal for you so you didn’t have to worry about cooking. You didn’t have to worry about buying the food and they also cleaned up,” she said.
Togyi said they didn’t have to pay for chemotherapy as that was covered and Avery had other medications as well that were covered by extended health. She said, some of those medications would have been cost to families if they were not covered by extended health.
”There is a substantial support system,” Togyi said. She said the other families were a huge support for them through their journey.
“When you go through hell together you are bonded as well,” John added.
In the hospital, a parent advocate checks on you, Togyi said. And one night a week there is a formal get together so all Oncology parents who can participate, can meet each other and have coffee. “Gives you the chance to talk and share your stories and offer advice to each other and just get to know one another,” she added.
Togyi said that the volunteers at the hospital loved Avery and Avery loved them.
“There were volunteers who would come sit with the kids so you have a chance to get out… Almost everyday I would get a break,” she said.
“Avery needed to get up every two hours to check his urine to make sure his chemo wasn’t toxic. It was tiring and to just be able to get out and go for a walk felt really good because that is when you have a lot of stress and you need to burn off energy,” Togyi added.
Avery said he was very excited to go to Legoland in Florida. The family has a Facebook page called Hot Dog Diaries – Round 2, where they put out information about Avery’s journey.