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Tuesday, November 29, 2022
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HomeNewsHelp Hard To Come By For Lindsay Boy Battling Rare Cancer

Help Hard To Come By For Lindsay Boy Battling Rare Cancer

By John McFadden

KAWARTHA LAKES-Those of us who are suffering the January blahs with COVID and the cold need to hear the story of Lindsay boy Xander Townsend to help put things in perspective.  The 12-year-old was positive and upbeat as Kawartha 411 talked to him this month about the rare form of cancer that has left him in a wheelchair fighting for his life.

“I feel pretty good – not as good as I felt before the cancer but I am okay,” Xander said from his downtown Toronto hotel room, not far from Princess Margaret Hospital where he is receiving chemo and radiation therapy to treat the cancer attached to his spine. It has left him in pain, unable to walk and unable to toilet. “I think it’s just bad luck what has happened to me.”

Indeed, Xander had some bad fortune earlier in his short life. His father Derek Townsend said this latest tumor developed from when Xander was treated in hospital at the University of Florida several years ago for a rare tumor named Clear Cell Meningioma of the Quadra Equada. Townsend added doctors in Florida told him there was a two per cent chance Xander would develop a secondary tumor in the form of Radiation Induced Cancer from the proton treatment they were administering to him for the original tumor. Xander unfortunately fell into that two per cent category.

Xander had his latest surgery in Toronto in early December and discovered the cancer. The result of the surgery left Xander a partial paraplegic and incontinent. His father says it has been a pretty rough stretch since then.

“He is unable to drink anything due to the treatment so that means he is constantly hooked up to an I-V.  He receives radiation therapy Monday to Friday at Princess Margaret.  That has caused his hair to fall out, something he is very self conscious about,” Derek said.  “His cancer, which is called Stage 4 Aggressive Mutated Sarcoma of the Quadra Equada, is very rare and we have been told he is the only child in Canada who has it.”

Derek said he has been frustrated by a few developments including Kawartha Lakes Haliburton Housing’s refusal to even try to accommodate Xander and the fact he is in a wheelchair. They even refused a letter of reference to rent another location according to Derek.

“One major problem is Kawartha Lakes Haliburton Housing that I live in. They will not move us from a two-storey dwelling which leaves Xander staying in our living room with no access to privacy or a bath,” Derek said. “He can’t even get his new wheelchair through the door.  They will not help subsidize a home to assist Xander in his new needs to bring him home. KLH has been my landlord for six years and we are in great standing but now that Xander requires proper accommodations they won’t help us. It makes me so angry. They are wasting money on dwellings that are not working and leaving families with disabilities in need.”

Ryan Cowieson, Communications Officer for the City Of Kawartha Lakes, responded by email.

“Staff are aware of the family’s situation and have been working to make this difficult time easier for them. We cannot get into the private details of our tenants, but we have been working closely with the family for several years to meet their unique needs and have helped them to the extent that’s possible. We’ll continue to do everything in our power to support them,” Cowieson stated.

Derek also said that he is worried about funds and that Xander’s Go Fund Me page https://www.gofundme.com/f/please-help-xander-and-his-journey fundraising has stalled out at about half of its $25,000 goal.  He added the family has spent almost ten thousand dollars of donations on Xander’s treatment so far. Derek said it has been a double whammy because he is in school and his spouse has had to take a leave from her job in order to travel with and care for Xander

“Costs are adding up between medical supplies, medications that are not covered, housing, transportation and food. It’s been really tough,” Derek said.

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