A Blood Cancer Survivor Advocates For Gentler Treatment Options
Patient Perspective Brampton, Ontario native Nicholas Gorys is in many ways a pretty ordinary 11-year-old. He likes to hang out with friends and play video games. And, like many 11-year-old boys, he’s a ball of energy.
Nicholas Gorys is far from ordinary. At the age of 18 months, he was diagnosed with Acute Myeloid Leukemia (AML), a cancer of the blood-forming cells in the bone marrow.
“Some members of our family had gone to Italy, and when we came back, Nicholas had flu-like symptoms,” says Mark Gorys, Nicholas’ older brother. “We kept bringing him to doctor after doctor, but unfortunately the connection to something greater than a common cold was never made.”
“One Sunday night, he was crying and holding the back of his head in agony. My mom brought him to the pediatrician the next morning, and he noticed these pin needle bruises all over his legs,” Mark says. “He immediately sent Nicholas down to Sick Kids for a blood test.”
“They started working on him and we couldn’t believe what was happening. We were in a complete state of shock.”
A parent’s worst nightmare
“Within an hour of the blood test, the doctor came out and said I have some very bad news for you. Your son has leukemia and we have to start working on him right away. He may not make it through the night,” Julius Gorys, Nicholas’ dad, recalls. “They started working on him and we couldn’t believe what was happening. We were in a complete state of shock.”
Nicholas was admitted to the cancer ward and immediately hooked up to a dialysis machine to separate and collect the excess white blood cells in his blood. While a normal white blood cell count is between 8,000 and 12,000 per cubic millimeter of blood, Nicholas’ was over 300,000.
“If we hadn’t brought him in when we did, he probably would have died within a couple of hours. That’s how close it was,” says Julius.
Nicholas spent the next five months in the hospital undergoing four rounds of chemotherapy to eliminate the leukemia cells from his blood and bone marrow. And while he showed signs of remission early on, the cancer returned with a vengeance after his third round of chemotherapy.
“When talking to one of the doctors I asked him what Nicholas’ chances of survival were. He said, ‘I can’t even count the people on one hand who have managed to survive in Nicholas’ situation.’ We were on pins and needles,” says Julius.
Doctors insisted that only a bone marrow transplant could save his life.
“Each child has a 25 percent chance of being a partial match with a sibling. It’s like the lottery,” explains Julius. “We were thrilled when we found out we had a match among Nicholas’ five siblings.”
On November 18, 2005, Nicholas received a bone marrow transplant from his brother, Christopher, who was then only 10-years-old.
“Radiation and chemotherapy have saved the lives of countless children from leukemia and other types of cancer, but as effective as they are, they can be harsh on patients and affect them long-term.”
The costs of surviving
Radiation and chemotherapy have saved the lives of countless children from leukemia and other types of cancer, but as effective as they are, they can be harsh on patients and affect them long term.
Indeed, children who survive cancer are at risk of having a host of health problems because of the toxic side-effects stemming from the treatments, often long after the last dose.
In Nicholas’s case, four grueling rounds of chemotherapy left him with hearing loss, vision loss, and dental complications.
Less damaging cancer therapies
Nicholas and his family know how lucky they are that he survived. However, their success has come with the recognition that children often must struggle with long-term and permanent side-effects of their treatments.
Today, the Gorys are advocates for the development of new, more targeted cancer therapies that are gentler for children.
“The sort of innovations that have taken place with respect to leukemia have been fairly profound. It’s great to see this continued evolution of research and development of cancer therapies,” says Julius. “But it’s important that people realize that you need to continue to support research in order to see results.”