By Kassie Parisi
BALLSTON LAKE — The past few weeks have been busy for Jacob Monday.
Over the course of a few days, the 16-year-old Ballston Lake resident met his idol, actor Chris Pratt, and also became an Instagram superstar, with more than 100,000 followers. Over the next few months, his goal is to go on adventures, including visiting Universal Studios in Florida.
The journey won’t be easy.
Jacob, who lives with his mother, Barbara Williams, and his younger brother, Lee, has terminal bone cancer.
He was diagnosed in the winter of 2016, and for two years he has been battling the painful disease non-stop, with round after round of intensive chemotherapy.
At one point, Jacob and his mother thought the cancer was gone for good. But earlier this year, when Jacob went to get his chemotherapy port removed, doctors found spots on his lungs.
Williams said doctors told her that, even with treatment, Jacob’s chances of survival were low, and that there were no options left.
After going through another round of tough chemotherapy over the winter, Jacob made the decision to stop the treatment in January. He decided he would rather enjoy the time that he has left, and the treatment was making it more and more difficult to do that, he said.
“I could have died from a paper cut, or the dumbest things,” he said about the treatment. “Itsy bitsy things could become the biggest problems. It’s like a 50-50 chance of surviving that chemo.”
Now, Jacob spends his days traveling to doctor appointments. Sometimes, when he’s lying on the couch in his home, he asks his mom for help to adjust pillows because it’s so painful to move. A sophomore, he attends school when he can, but he was irritated when he was informed he couldn’t run and jump in gym class.
Still, a conversation with Jacob reveals a teenager whose wit is razor sharp and who refuses to be defeated. He named one of his tumors “Jeff,” and refers to his doctor as an assassin sent to kill it.
Acerbic and funny, his place in his family is clearly that of the older brother who goofs around with his younger brother, and a teenage son who hands his mom a dose of good-natured sarcasm every now and then.
Jacob speaks about his cancer in an offhand way. It’s a part of who he is, and talking about his favorite movies, television shows and actors is a better use of his time. He’s a fan of “Guardians of the Galaxy,” and loved “Jurassic World.” He doesn’t think Batman qualifies as a real superhero.
“I don’t want people to pity me,” he said.
Williams is keenly aware her son doesn’t want pity, and treats him not like a typical teenager, but as an adult who has made a difficult, painful decision.
She said that the support her family has received from the community, including donations from a GoFundMe campaign called “Jacob’s Wishes” — his classmates at school are also raising funds — has helped her feel like she has a network she and Jacob can rely on.
The online campaign has raised more than $20,000 to help Jacob make the most of the time he has left. Last weekend, Shen held an honorary degree ceremony for Jacob.
But the looming prospect of losing her child still weighs heavily on her. She said she can’t understand why Jacob ended up in this situation.
“I can’t think of anyone who deserves this less than him,” she said.
Williams is trying her best to help Jacob do as much as he can, but she admitted that, sometimes, traveling is easier said than done.
When she took him to Ohio around Easter to visit family, they had to return early because Jacob was in pain and needed to see a doctor.
“I’m hoping we can do them,” she said she said of planned trips. “We’re gonna take it slow.”
Williams said a weight felt like it had been lifted from her shoulders when Jacob decided to stop treatment because she knew that he would finally be under less stress.
But the reality of situation is something she has to grapple with every day, she said.
“I don’t really know how to say goodbye yet,” she said. “I want to see him grow up. I want to see him graduate.”
For now, the only thing getting Williams through is her faith that, sometime, she will see Jacob again.
“If I didn’t have that, I don’t think I could do it,” she said. “Love your kids every chance you get.”
To donate to Jacob’s Wishes, visit www.gofundme.com/jacobswishes.