NORTH SMITHFIELD â€” Tim Mandeville recalls watching his boy pursue his passions so well it hurts.
More often than not, when he looks outside his home, he still pictures young Evan playing baseball with his best friend, Riley Crozier, in the back yard. He rewinds that and other memorable videos in his mind time after time.
â€śEvan loved playing with Riley, and going with his older brother Joshua into the swamps to catch turtles, or just swamp-jumping; he also liked riding his ATV (all-terrain vehicle), as he had his own,â€ť noted Mandeville, a 41-year-old North Smithfield resident and sales manager for an East Providence-based manufacturing company.
â€śHe really enjoyed cooking breakfast for the family, and his specialty was a bacon, egg and cheese sandwich. It didn't have to be a weekend, but even on a weekday, he'd say, 'Hey, anyone want one?' He liked doing what boys traditionally want to do.â€ť
His mood immediately changed.
â€śIt's hard to describe what we're feeling right now,â€ť he sighed. â€śWe're still coping with it.â€ť
The elder Mandeville explained how empty, helpless and crushed he and wife Aimee felt after doctors issued the devastating news on Nov. 13, 2011 â€“ that Evan, then 10, had been diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare, incurable form of brain cancer.
Exactly one year later, virtually to the hour, Evan â€“ just 11 years young â€“ lost his battle with the disease.
â€śHe passed at 6:10 a.m. at home,â€ť Mandeville said sadly. â€śThere's no good news about this, except maybe we had time to prepare for it, to spend more time with Evan. You knew it was coming, as opposed to waking up at night, picking up the phone and discovering the police are on the other end.
â€śIf you're going to lose a child, you don't want to learn it that way.â€ť
Simply put, DIPG is a cancer that baffles even the most ardent, studious pediatricians and scientists, as it strikes at the very heart of childhood. It affects the 'pons,' or middle portion of the brain stem, and renders function of the nervous system impossible, according to The Cure Starts Now Foundation's Web site.
Symptoms include double vision, inability to completely close the eyelids, drooping of one side of the face and â€“ later â€“ difficulty chewing and swallowing.
Those symptoms, and others, usually worsen rapidly because of the tumor's growth within the stem. Less than 10 percent of children with DIPG live longer than 18 months after diagnosis; surviving is virtually nonexistent.
In comparison, those with lung cancer have an 80-percent survival rate if caught in the early stages (five percent if diagnosed in Stage 5), while breast cancer typically has a rate of 80-90 percent and leukemia approximately 48 percent.
Following the diagnosis, after the Mandevilles had hopped in the family car and trekked to Boston's Jimmy Fund Clinic for Evan, they noticed huge murals on the walls depicting those who had participated in the annual Pan-Massachusetts Challenge.
As much as they hated the fact it was just a matter of time before the disease took their son, they became fascinated by the amount of people who had collected sponsors and cycled lengthy distances, all to raise money for cancer research.
â€śWe started talking to people who had lost family members and friends to cancer but rode in the PMC, and the positives were so clear,â€ť Tim offered. â€śForty percent of all revenue goes to the Dana-Farber Cancer Institute; the children's segment goes to the Jimmy Fund, and that's where all of Evan's treatments were.
â€śWhen Evan was diagnosed, we knew the term 'illness,' so we knew what was going to happen,â€ť he added. â€śWe started to think, 'What can we do to stop this from happening to other families?' Aimee and I decided to take part in the PMC; we wanted to help raise money to combat DIPG.â€ť
When the couple informed family and friends about their decision to try the 34th annual event â€“ call it a sort of cyclist's dream marathon â€“ they jumped at the chance to sign up.
Almost immediately, they officially formed, â€śEvan's Crew.â€ť That team of seven includes Tim and Aimee; her sister, Andree Brochu, of Cumberland; Riley's mom, Audrey Crozier; long-time pal and North Smithfield native Katherine Plante; and Chuck and Laura Labash, both of whom work with Aimee at the University of Rhode Island.
None have ever attempted the trek, but are anxiously awaiting the chance to complete it.
On Aug. 3-4, all but Crozier will cycle 192 miles from Wellesley to Provincetown; it begins at 7 a.m. on Saturday, and the contingent will bike approximately 112 miles before a temporary stop at Massachusetts Maritime Academy in Bourne.
After spending the night in a tent on campus, they'll awake early Sunday and travel the remaining 80 miles to the Cape's tip.
As for Crozier, she will do the 84-mile, one-day ride.
For those who don't know, the PMC is the original charity bike-a-thon that gleans more money than any other athletic fund-raiser nationwide. It was founded in 1980 by Billy Starr, still the event's executive director and rider.
Prior to this year, the Challenge has raised $375 million for adult and pediatric cancer research and patient care at Dana-Farber. Organizers give 100 percent of every rider-raised dollar directly to DFCI and the Jimmy Fund, a number unequaled within the $3 billion athletic fund-raising event industry.
Actually, last August, it mustered $37 million, more than 50 percent of the Jimmy Fund's annual revenue. Likewise, 230,000 individual contributions came the PMC's way.
It's a fully-supported bike-a-thon with food and water stops, mechanical and medical assistance, luggage transportation and lodging. The longest course winds through 46 towns through the Bay State, though cyclists may choose from 11 routes of varying mileage, as it's designed to cater to all levels of biking strength and time availability.
There are six two-day routes ranging from 153 to 192 miles, and five one-day rides from between 25 and 110 miles. Last year, each cyclist was required to raise between $500 and $4,300 to participate.
â€śThis commitment to the fund-raising portion of the PMC is a testament to the riders' dedication to the cause and their belief in the PMC mission,â€ť Starr stated.
Few took the news of doctors' findings harder than Audrey Crozier, a woman and neighbor whom â€śDadâ€ť Mandeville has been friends with since kindergarten.
â€śEvan's mom and I are best friends, so we went through our pregnancies together, and we shared so much time together with the boys,â€ť said Crozier, who has three children. â€śEvan and Riley were 'buds,' completely opposite but really close. Evan was adventurous and wild, (while) Riley is cautious and shy.
â€śThey really connected when Evan figured out that Riley was really good at all types of video games, probably around age seven. They both played baseball, Evan's favorite sport. He was such an active kid; he never stopped moving. He gave me several heart attacks along the way, with climbing trees and sheds, or whatever he could find.
â€śWe were completely devastated by the news,â€ť she continued. â€śAimee thought she'd get Evan checked for Lyme disease, and â€“ next thing you know â€“ they found a lesion on his brain, and they were on their way to Boston's Children Hospital. I just couldn't believe this was happening to someone so close to us. I thought my friends lived in a bubble, protected from all this stuff.
â€śEvan's dad was always saying how great life was and, during all of the chaos of (watching) these wild kids, he'd sing, 'You're going to miss these days â€¦ ' Very ironic! He will never, ever be the same again. Evan was his right-hand man, always so excited about everything, every holiday, camping trip, fireworks display, everything!
â€śWe prayed and prayed that he would be the one child to survive. I didn't want to give up on him or them. DIPG has zero-percent survival, yet is grossly underfunded because it's so rare. Only 100 kids per year are diagnosed with DIPG; they won a lottery ticket of the very worst kind.â€ť
When Crozier was told of the family's plan to ride, she quickly understood her own query, â€śWhat can I do to help?â€ť She often heard those words from others.
â€śThe Mandevilles were very private and proud people; they didn't want or need for anything,â€ť she said. â€śThey just wanted prayers, and finally, you're telling me that I can raise money to find a cure for Evan's disease? I'm in! I've worked out all my life. I'm not a huge fan of biking, but I decided to take the plunge and make a difference.
â€śI will ride on Evan's wings.â€ť
When asked if she's worried about attempting such a distance, Crozier admitted, â€śI definitely was nervous before I rode 50 miles pretty easily. For me, it's more about finding the time to train.
â€śIt's hard to actually sit on a bike for five-plus hours!â€ť she added with a laugh. â€śI have run two half-marathons, and I will be doing at least one more this year after the PMC. I started training about two months ago, averaging 20-50 miles (each) time. Mentally, I'm just preparing for an entire day on a bike; I'll complete it no matter how long it takes me.â€ť
Tim doesn't think it will be that tough to complete 192 miles, and he has outstanding reason: He's finished 10 marathons, and is currently working out not only for the PMC but the Amica Newport Marathon (26.2 miles) in October.
â€śThe training is similar,â€ť he explained. â€śAs a group, we start out at about 5 a.m. on Saturdays and we put in 80 miles or so. In fact, we did that (on June 22). The PMC has a suggested training regimen, and it starts at about 40 miles a week, then climbs every week to about 90 miles in a day, then 40-50 the next day. It's all about increasing stamina but also confidence.
â€śThis is also a huge sacrifice for any rider; you give up something for it â€“ family time, watching the Red Sox or going on a family picnic,â€ť he continued. â€śBut we're dedicating our time to help get money for cancer research. We're proud to do it as Evan's Crew. As we ride (during preparatory sessions), we talk about Evan, tell stories. We share them about Evan, and laugh and cry all along the way.â€ť
He's also particularly proud of the fact the crew has gleaned about $32,000 of the $47,000 total they promised to the PMC.
â€śWe developed (with organizers) the Evan T. Mandeville DIPG Research Fund,â€ť he mentioned. â€śThe money raised will go strictly for DIPG research. In order to create the fund, we had to pledge $100,000 in the span of five years, so â€“ if we get $47,000 â€“ we'll be almost halfway there. And in only our first year!â€ť
Stated Crozier: â€śI'm very excited to ride for Evan! I had no idea I was going to have this much success fund-raising. I am blown away by the generosity of others. North Smithfield is a wonderful community with so many great families. Now it's our turn to give back and support the Mandevilles. This is the only thing they've ever asked for, a donation in Evan's memory.
â€śWe need to find a cure so that other families can be saved from such a horrific tragedy,â€ť she added. â€śI had heard of the ride, but I had no idea of the magnitude of it all. Oh, I still think the two-day riders are a little crazy. I keep thinking, 'I'm only doing one day, 84 miles. Most think I'm crazy, but it's really not that hard to do, once you set your mind to it.â€ť
Tim indicated he had red-and-white jerseys made up with his son's initials, E.M.T., on the sleeves, and â€śEvan's Crewâ€ť plastered on both front and back.
â€śThere's a little flame theme to them; the fire that burns within,â€ť he noted. â€śWe're so psyched to do this. If we reach $47,000, we'll receive 'Heavy Hitters' status. It's all for Evan and those others with the disease. We desperately want to find a cure.â€ť
To donate to the Mandevilles' cause, folks may visit http://www2.pmc.org/profile/TE0051, and that will link them to the team page. Those who'd rather send a check, it may be made out to Pan-Mass Challenge, 77 Fourth Ave., Needham, MA 02494. (On the memo line, write in Evan's Crew 28377-5).