The heart patient and now cancer survivor will chronicle his return to everyday life in a new blog on Philly.com's health channel, " Living With the New Normal."
"My head is in a good place because I had to go through all of this," he said. "It has made me a stronger person."
Last year, 11-year-old Rachel Kovach blogged on the site about her tumor removal surgery and chemotherapy as "Onco Girl." Now in remission, she passes the baton to Alex to give his post-treatment perspective as a college student struggling to find his independence and identity outside of a hospital setting.
A math major at Temple University, Alex recently started a full load of fall-semester classes, including two tough advanced math courses and German conversation. He is thinking of becoming a high school math teacher one day.
"I think he can be an incredible example and role model, to allow others to see ways through what can be very dark and difficult days," said Lamia Barakat, a psychologist at Children's Hospital of Philadelphia.
Doctors from Children's, such as Barakat and Alex's primary oncologist, Sarah Tasian, will contribute guest posts, as will relatives and friends. Alex's parents, Bob, 53, and Monica, 49, live in Willow Grove, and own a restaurant in Rockledge. They have two other sons, Adam, 19, and Paul, 15.
Alex first discovered a strange lump on the left side of his neck around April. He thought it was strep throat. Temple's student health clinic sent him home with cold medication. But at his routine checkup at Children's, his cardiologist, Marie Gleason, feared he faced something far more serious. She recommended an ultrasound test, which confirmed that the lump was cancerous.
"As a parent myself, to be faced with someone who has otherwise been doing well, that's what's so heartbreaking," said Gleason, who has known Alex for more than 15 years. "It could be my child."
A biopsy of the tumor narrowed the diagnosis down to a rare type of white blood cell cancer called Burkitt's lymphoma, also the fastest-growing pediatric cancer. All pediatric cancer is rare, Tasian explains, and 400 to 500 children are diagnosed with Burkitt's per year in the United States, about 90 percent of them male.
No one knows what causes lymphoma, although Gleason said any medical issue such as Alex's heart condition, which requires repeated imaging-related radiation exposure, puts the patient at high risk for cancer.
"There might be some link," she said. "The incidence is low but not rare."
Tasian, however, believes the amount of radiation would have been too low to be the cause.
Fifty years ago, such a diagnosis would have meant almost certain death, but today Alex's chance of survival was given as 90 percent or better.
Tasian and the rest of the team at Children's still plan to test him every three months for lymphoma recurrence as well as any side effects from chemotherapy. "The longer you are in remission," she said, "the better everybody feels."
Usually, recurrence starts with a subpopulation of extra-mutated lymphoma cells that have managed to survive the chemo. "They can take root, and take off," Tasian said.
Largely responsible for turnarounds like Alex's is the Children's Oncology Group, a collaborative research team of more than 8,000 experts from over 200 institutions. The current chair is pediatric oncologist Peter Adamson of Children's Hospital.
Since 1955, the group has done clinical trials to discover the optimal chemotherapy drugs that have directly led to today's high survival rates, says Anne Reilly, Children's Hospital's medical director of oncology.
Any medicine that fights cancer falls under the term "chemotherapy." To prevent cancer cells from growing out of control, a multi-pronged defense is crucial.
"If you just use one drug, the cancer will become resistant to it very quickly, so we use multiple agents that attack cell growth in multiple ways," Reilly says.
While traditional chemo drugs attack any cells that grow fast, a newer class of drugs uses biologically targeted antibodies. Antibodies are proteins that attach to the surface of certain cancer cells, signaling the body's immune system to get rid of them.
The antibodies are currently "exploding" on the market and have the potential to revolutionize cancer treatment, Reilly says. If a conventional chemo drug is a big mallet, these antibody drugs are slingshots. And better aim means fewer side effects.
Alex's regimen combined one antibody and four traditional cell-killing drugs, and in palpating his neck after the first administration, Tasian could feel his tumor starting to melt away. But during subsequent cycles, he experienced severe complications that once again put his life on the line.
In the third round of chemo, one of the cell-killing drugs, methotrexate, sent Alex into kidney failure. His body wasn't able to process it properly, so his doctors loaded him up with intravenous fluid to flush it out.
But Alex instead gained 25 pounds of fluid weight in two days, and the toxic methotrexate still hadn't left his system. He was puffy and breathing heavily, and had elevated blood pressure. Normally one to look on the bright side, according to his mother, Monica, the young man couldn't manage a smile.
Finally the doctors brought in an emergency antidote - with a hefty $29,400 price tag - but almost two months passed before his kidneys returned to normal.
During the same chemo cycle, he woke up one morning feeling light-headed and had trouble breathing. His blood pressure had dropped to 59/40, and his skin appeared blue.
Later, a CT scan revealed a blood clot lodged in his lung. He was taken to Children's cardiac intensive care unit and treated with blood thinners and oxygen. Now he must inject himself with a blood thinner twice a day. He can't drink alcohol, since blood thinners and alcohol don't mix.
"For most 21-year-olds I would assume that would be a real downer, given it is my first legal age to drink," he said. "But I wasn't much of a drinker anyway."
A month after his last chemo session, Alex was on the road with his mother when Tasian called with some news. His last imaging scans showed no more traces of cancer. He's in remission, with a less than 10 percent chance of the lymphoma's returning.
"I danced a little bit in the car," he said with a laugh, and his mother gave him a big hug when they stopped at a traffic light. "I don't physically feel any different, but I feel awesome mentally."
Even for patients in remission, the impact of cancer doesn't end there. They must reintegrate into society and determine what role the disease will now play in their lives.
Barakat tells patients and their parents to think of cancer as an old coat, asking them where in their home they would keep it.
"People put it in the closet, other people lay it over the chair in the living room," she said. "Some people say, 'I'm tripping over it every time I walk in the door of my house. How do I get it in the coat closet?' "
This metaphor helps them have some control over the size of cancer's presence in their everyday lives and thoughts.
For Alex, blogging and follow-ups with his oncologist will keep cancer at the forefront of his mind for a while longer.
But more than anything, he can't wait to tick off items on his long-delayed to-do list: taking a cross-country road trip with friends, getting in shape, living on his own, playing basketball with his brothers - the type of goals any 21-year-old might pursue.
Alex shows a maturity beyond his years, never once playing the victim or acting resentful, and he understands that even unexpected hardships like cancer can be life-affirming.
"You can have a loose plan, but it's never going to be as you originally planned, which I think is great, it makes it interesting," he said. "It's all part of the experience."
Contact Meeri Kim at 857-205-6920 or firstname.lastname@example.org.