Plans are under way for the first Proton Therapy centers to open in the United Kingdom in 2017.
But Jasmin Novakovic, a mother from Aylesbury, couldn’t wait four years.
Her 7-year-old son, Alex, has brain cancer. Terminal brain cancer, her local National Health Service (NHS) physicians informed her. A medulloblastoma.
Despite surgery and chemotherapy, the doctors told Jasmin, “ ‘The cancer has spread everywhere.’ ” And conventional radiation therapy using photons was the last hope for her boy, she remembered the radiation oncologist saying.
“And then she started going through the side effects for photons,” Jasmin said. “She said these are side effects that may or may not happen. The list was endless, absolutely endless. The burns to the body. The secondary cancers. Alex might end up having problems with his heart and lungs. I mean they would be treating his head and spine with photons but would damage all these other healthy organs in the process. It horrified me and sounded so barbaric.”
The discussion with the radiation oncologist that January day “got quite heated,” Jasmin said. Jasmin’s husband had read about proton beam treatments on the Internet and asked if protons might be a viable option to treat their boy.
“The radiation oncologist basically said protons and photons are the same thing and there was no proof that protons worked,” Jasmin said. “I said, ‘Your own NHS website tells us about the benefits of protons over photons. We wouldn’t be getting proton machines in the UK if it wasn’t proven.’ ”
At the parents’ insistence, Alex’s doctor agreed to consult with doctors at a proton center in America. At a subsequent meeting, “She said no one would treat him with protons; the cancer was too advanced,” recalled Jasmin.
Then and there, Jasmin and her husband decided photon treatments would rob Alex of his quality of life if he were to survive. “The most important thing for me is that he have a good quality of life,” she said. “Otherwise, what’s the point?”
They prepared themselves for palliative care for what they thought would be Alex’s final weeks with his family.
“I was in such a state at that point,” Jasmin said. “Thankfully, my brother got in touch with MassGeneral in Boston. And he got Alex’s scans and medical notes sent over to the doctors there. They said they may be able to cure him.”
Jasmin paused for a moment to gather her emotions. “Up until then, I had never heard the ‘cure’ word before in Alex’s case.”
Side effects were discussed, Jasmin added. But they were of no great concern.
Considering Alex’s cancer, proton treatments needed to begin as soon as possible. “We had two weeks to raise £255,000 to pay for Alex’s treatments,” Jasmin said. “Two weeks. My brother took it by the horns. We got a website up and running to let people know about Alex’s cancer. I texted a load of mothers and said look, this is the situation. And they all called the newspapers and radio stations and TV stations. They used Facebook and Twitter. A lot of businesses in our community donated. Alex’s school helped enormously. And other schools did, as well.”
Kids ’n’ Cancer UK, a pediatric cancer charity, also facilitated the urgent fundraising.
In two weeks, Alexander’s Fund raised 158 percent of its goal. “The help we received from our neighbors and the whole community was fantastic,” she said. “It was unimaginable.”
Alex is currently nearing completion of his six-week course of proton beam treatments. “He’s responding very well.” Jasmin said. “He’s having treatments on his spine and head. And an hour and a half after protons, he goes out to play. If he were in the UK now getting photons, he’d be in bed.”
The apartment that Alex and Jasmin have at Christopher’s Haven is “just lovely.” It’s located just a five-minute walk to the proton center. And her neighbors at Christopher’s Haven are families just like Jasmin’s, with a child being treated with protons. “It’s all very comforting,” Jasmin said.
Jasmin is eager to learn of her son’s prognosis from his pediatric oncologist at the Francis H. Burr Proton Therapy Center at Massachusetts General Hospital. A round of chemotherapy may be needed. Doctors won’t know for sure until they see new images of Alex’s spine and brain.
“Once Alex is given the all clear, any leftover donations will stay with Kids ’n’ Cancer to help more kids like him,” Jasmin added.