By John Campbell Community Press
Wooler – Darren Vink’s two-year battle to overcome cancer now lies in the hands of a clinic in the Phillipines where he’s getting injections of a drug not yet approved in Canada.
Vink, 17, began receiving Rexin-G, a form of gene therapy that targets tumours, July 20 and the initial results have been encouraging. Two of the visible tumours, on his ribs and chest, shrank by about 20 per cent within a week of starting treatment, “which is incredible, best news we’ve heard,” said his father, John, last week.
Staff at the clinic are “amazed … (by) the amount of progress that he’s made, he’s surpassed all their other records.”
Those who know Darren aren’t surprised. The teenager, who loves to tinker with farm engines, attend 4-H meetings and go paintballing with friends, has shown remarkable resilience since being diagnosed with osteosarcoma in his right femur in July 2007, He started chemotherapy immediately and had his knee replaced in October. The chemotherapy ended in April 2008 but four months later Darren began complaining of pain in his other knee. Tests confirmed the cancer was back, this time in his spine and lungs as well as his left knee. Since then he’s had two major surgeries on his spine and his other knee replaced.
Radiation and surgeries slowed progression of the disease but by spring of this year the staff medical oncologist at Mount Sinai Hospital in Toronto where Darren was being treated was telling the family, “We’ve given the best drugs we can for chemotherapy. Unfortunately, there’s nothing more we can do,” John said. “They never did say (Darren) has X amount of days to live … We never asked nor did we really want to know.”
And Darren showed no signs he was about to let cancer get the better of him. He continued to live his life much as he had done before, doing the things that boys his age like to do, such as riding on a four-wheeler – but in his case using a long stick to shift gears.
Although is body is frail and the cancer has taken its toll, “Darren is still strong,” his father said. “How can we give up.”
Darren isn’t about to nor are his parents and three siblings, along with friends of the family and members of the community who have shown their support with numerous acts of kindness and donations of money.
It was Darren’s mother, Ilse, who read about Rexin-G on a cancer blog in June and got the ball rolling for her son to begin receiving treatment at the Epieus clinic in Manila. The gene therapy, which targets and destroys cancer cells, is still in clinical trials in the United States but is commercially available in the Phillippines.
“The scientific articles on Rexin-G, sponsored by the manufacturer, claim cessation of disease progression, and improved survival times,” said Dr. Kathy Wilkins, a Campbellford veterinarian and close friend of the family.
The founder of the clinic, Dr. E.M. Gordon, “communicated extensively with the Vinks via e-mail to determine Darren’s eligibility to start Rexin-G,” Wilkins said. She “also put them in touch with the Lazarex Cancer Foundation.” Its mission is “To provide resources for cancer patients who’ve been told they have no other options but who are not yet done with their journey in life and refuse to give up now.”
The foundation “has been instrumental in getting Darren and Ilse to the Philippines,” Wilkins said, covering all their travel, accommodation and treatment costs – $40,000 – for the first month.
Darren, who is being given Rexin-G five times a week, is about to complete his first round of treatment and return home within days. He’ll rest for two weeks before heading back to Manila to begin a second round.
Four to five treatment cycles will be necessary and the surgical removal of the remaining tumour masses, if possible, could follow.
“It’s terrific that he’s seen such good response to the medication but they’re half-way across the world and they want to be home,” Wilkins said.
She is assisting the Vinks in applying to Health Canada’s Special Access Program to have Darren be treated with Rexin-G in Toronto by an oncologist at the Hospital for Sick Kids who’s a member of its New Agents and Innovative Therapies Group.
Wilkins has enlisted the help of Andrew McFadyen, a Trent Hills resident who went through the same process for his son Isaac, who suffers from an extremely rare disease caused by an enzyme deficiency.
His campaign to have the federal government approve use of medication that his son needed made headlines because the annual cost of his son’s medication is huge, in the hundreds of thousands, which the provincial government, as health-care provider, wasn’t prepared to assume initially. It did eventually as a result of intensive lobbying by McFadyen and his supporters.
McFadyen accompanied John Vink to a meeting this week with an oncologist at Sick Kids who “does seem receptive to the idea” of taking Darren on as a patient; it’s a commitment the federal program requires in order to allow use of a medication not yet approved in Canada. It’s also essential that provincial funding be secured to underwrite the cost of treatment.
McFadyen said Monday he has spoken to local MPP Lou Rinaldi to inform him of the family’s situation and to make him aware the Ontario government will be asked to help.
“I’m quite confident Lou, with his experience, will be passionate and work as diligently as he can on the file in order to advance it,” he said.
And he will continue “to advocate on behalf of the family at the federal level if it needs to go there,” added McFadyen.
“I’ll be here as a contact for them and a voice if they need one.”
He said the Vinks “have a whole slew of things going on” – dealing with a sick child, looking after three other children, running a farm that raises beef cattle – so moving the approval process forward as quickly as possible is critical, which he hopes to facilitate by drawing upon his own experience.
“There’s not a day that goes by that I don’t remember exactly where we were and how difficult that was.”
Darren and his mother are to meet with the oncologist next week.
John Vink said he and his family are thankful for the generosity the community has shown them. “I hate to think how things would be otherwise,” he said. The costs involved in making sure Darren is given the best medical care the country provides “would have been too much for us to do on our own,” he said. “Every day there’s somebody else (stepping forward). They’re praying for you or they’re helping out financially.” Or making meals – “the list goes on.”
Even though Canada’s health-care system overall has “been good,” John said,, “unfortunately, (it’s not) been quite good enough.”
Marion Greveling, a 4-H parent and friend of the family, is spearheading fundraising efforts on behalf of Darren. Anyone wishing to make a donation or assist in any way can call her at 613-475-2075.