'Leukemia Warrior' an inspiration to others
HINSDALE — It's not unusual to have a big party for your 16th birthday. But recently, Cameron "Cam" Forward celebrated his with a unique theme: "End of Treatment."
The party was the culmination of a yearslong battle against mixed phenotype acute leukemia, a rare childhood cancer that affects both the B and T cells of the blood and bone marrow. During that time, he's had brushes with death, dramatic fluctuations in weight, and an untold number of hospital visits.
Cam — better known to the nearly 1,400 members of his Facebook group as "Cameron the Leukemia Warrior" — is now in recovery, having received his last chemotherapy treatment Jan. 18.
On March 3, more than 65 friends, family and classmates turned out for a celebration at Jiminy Peak's Country Inn to mark that milestone and celebrate his birthday.
"Cam has such an awesome support system," said his mother, Christen Simmons.
If all goes well and his health continues to improve, Cam will return to school in the fall, when he'll be a junior at Wahconah Regional High School. He's been tutored at home since was he diagnosed with cancer in late 2016. "It will definitely be a transition. The high school's been great though," Simmons said.
Cam was diagnosed with cancer when he was 13. At the time, he was an active youth, going to school, playing video games with his three brothers and friends, and skiing with family. But then, around Halloween in 2016, his body began turning against him.
He started experiencing headaches and pain in his left knee. His symptoms quickly got worse. Cam began limping and bruising frequently. "He was waking up at night quite often having severe headaches," Simmons said.
Next came rounds of doctors visits to find out what was wrong. Was it an orthopedic issue? A virus? A brain matter? The latter could have been feasible. This family is no stranger to chronic health battles and surgeries.
Both Simmons and one of Cam's younger brothers, Xander, have had more than a dozen brain surgeries between them to correct what's known as a Chiari
This occurs when the cerebellum, the part of the brain that helps people maintain balance, slips into the opening of the skull that allows the spinal cord to pass through.
Pressure can subsequently build up in this area and block the flow of cerebrospinal fluid or result in a leak. While Simmons was an adult when undergoing her surgeries, Xander was only about 4 years old. Both are doing much better.
Simmons had to stop working in 2013 when her own brain surgeries began. She has limited mobility because of a shunt in her brain, so she can't lift and move things like she did in her previous jobs.
Despite their history, Cam's condition blindsided them all.
The young teen, who has a mind for math and science, began researching his own symptoms online. He thought it could be some kind of bone cancer, but, he said, "I couldn't find anything that sounded like it was what I had."
On Dec. 6, 2016, Simmons picked up Cam from Nessacus Regional Middle School, and they went Christmas shopping. The mother immediately knew something was wrong with her son. Cam was extremely fatigued, and some of the blood vessels around his eye had burst.
"I thought, 'He looks really bad.' That day, my mind just started running wild. I thought, 'No, this isn't happening to my kid.' Neither of us said anything to each other."
Cam crawled into the bottom of their shopping cart and laid down to calm the pain. By that evening, they were in the Boston Children's Hospital Division of Hematology/Oncology waiting for the blood test results that finally gave them the answers they both needed and dreaded.
'Literally out of it'
Cam doesn't remember much between that night and his 14th birthday on March 3, 2017. Over the course of his hospitalizations, he's had a stroke, been on feeding tubes, had drains coming from his brain, and had to be put on a ventilator when he stopped breathing on his own.
"I was literally out of it, and I'm thankful that I don't have any memory of that," he said.
During one of his first lucid days, less than a week after being admitted to the hospital, Cam signed paperwork giving doctors permission to extract extra samples of his bone marrow for pediatric cancer research, on top of the samples they were taking to determine the best course of treatment for him.
"I was proud to do that," Forward said. "I donated it for research for cancer because this form is so rare there's legit nothing online about it."
Since the diagnosis, he's experienced a growth spurt, shooting up about seven inches to 5 feet, 8 inches. Because of various treatments, his weight has dramatically fluctuated. He weighed 138 pounds at the time of his first hospital admission in December 2016 and at his lowest he dropped down to 102. He's now within the 120- and 130-pound range on any given day.
As his immune system weakened and he was given steroid treatments, it also caused him to get meningitis and pancreatitis. Cam's feet often look purplish-blue because of poor blood circulation, and he has an ankle fracture that's still not healing because of avascular necrosis, the death of bone tissue through lack of blood supply.
However, there are some positive things he remembers from that initial hospitalization, like his family making a Christmas tree out of paper and other decorations on the wall near his hospital bed. He recalls getting stacks and stacks of cards from classmates, community members and complete strangers.
Throughout it all, Cam tried to stay positive.
"That was the only thing that helped," he said. "Knowing that I was in good hands with the hospital and having family and all the support and all the cards that came in every day, that helped.
"It makes me feel thankful that I have people I don't even know on a first-name basis that care about me and support me and just all around want me to be healthy."
Cam says it's been a struggle to navigate his recovery while also missing out on some of the key years of being a teenager. Being in a hospital in Boston meant being far away from his classmates. Only a couple were actually able to visit him there, including one of his best friends, Bella Witherell, who's been by his side since early childhood. While Cam couldn't run around, he was still able to talk, play video games such as "Minecraft" and "Fortnite," listen to music and have snacks with his friends, just like any other teen.
Cam came home in 2017, just before his 14th birthday, but because of his weakened immunity and physical state, he's been mostly homebound, and at times has had to use a wheelchair to get around. He missed his first day of Wahconah Regional High School and bonding with his classmates in days since.
"I haven't really seen many of them," he said of his friends. "I haven't been back at school."
Instead, he's developed a special bond with his tutor, Kathy Budaj, a coach for Hoosac Valley soccer, Wahconah's girls lacrosse team, and basketball for McCann, who has also home-schooled her own children. Together, they've not only had to catch up on what Cam missed in middle school, but they've had to simulate nearly two years of high school from Cam's kitchen table.
"I was told I was tutoring him because he had cancer," Budaj said. "I didn't know what I'd be walking into at that point. When I first met him, he was in the throes of a lot of medicines."
They both said class work, at times, seemed pointless when Cam was really sick. But at other times, aside from being a necessary part of his scholastic advancement, schoolwork was a welcomed diversion from the effects of cancer.
Budaj has grown not to see Forward as a boy with leukemia, but as a stubborn yet intelligent young man "with a heart."
"To be a boy to be going through what he was, going through beyond what I could've imagined," Budaj said. "He's just a trooper. Through the chemo sores and the tiredness, he was still willing to get to the table to do work."
While they're still focusing on Forward's academics, they've also begun talking about what's next for Cam. As his health continues to improve, it becomes more likely that the teen will be heading back to school this fall. But Cam has some valid trepidation about it. "I have a lot of anxiety," he said.
For one, he'll be jumping into his junior year of high school in a building with hundreds of kids he hasn't seen in years. They all look and behave differently. Junior year is also the year when academics become more challenging as teens are encouraged to study more seriously toward a path into college or a career.
For Cam, this will all be happening alongside a lot of unknown variables in his life, like how his body will hold up and how he'll fit in. During his treatments, Cam had to relearn how to walk. He also lost peripheral vision in both eyes. But like most people turning 16, he said he "definitely" wants to get his driver's license, another obstacle to overcome.
Proud to be a warrior
Now that Cam is in recovery, this is a time when his peers, teachers and families can really step up to show their support. Cam's siblings, cousins and a few of his friends, from the elementary to the high school level, have visited classrooms this school year to talk about childhood cancer. "I was very proud of them. It was really sweet," Cam said.
In return, several classrooms and athletic teams have sent Cam more cards and care packages with team T-shirts and other swag. "I feel students in school will do nothing but embrace him," Budaj said.
But it's also important for Cam and his family to not be characterized by cancer alone. They're human, too. They want friends to be there with them through sickness and in health, to cry with and to laugh with.
"It can be very isolating," said Cam's mother said.
"At the end of the day, we all want to know somebody cares," Budaj said. "They want to be part of something bigger than themselves. That will make the difference for Cam, and I think Cam will be an inspiration to others."
Cam said he fully embraces being called a "warrior," which is coincidentally his high school's mascot. He continues to advocate for himself and others, be it keeping in touch through social media with friends he's made in the hospital, and expressing concern and care for his brothers and his mom.
During an interview with The Eagle, he told his mother, "You're probably the strongest woman anyone could ever meet, especially with what you've been through and what your kids have been through."
Cam said he's also proud of his own inner strength and positive outlook for the future.
"I feel OK knowing that I had this instead of somebody else. I wouldn't want anyone else to have what I have or to have to deal with what I have had to do. I'm thankful my brothers don't have this," he said.
When he goes back to school, Cam said that while he's OK with answering a few questions about his sickness, he said people can educate themselves on their own. He's mostly hoping that people will just want to get to know him as a person.
"I feel like I don't need to explain myself to anyone," he said. "I feel proud to be Cameron the Leukemia Warrior."
Jenn Smith can be reached at firstname.lastname@example.org, at @JennSmith_Ink on Twitter and 413-496-6239.
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