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Stories of Courage & Hope Abstracts by Tom Swartz
In this issue:
Teen with cancer focuses on living for the future Tyler Copley doesn't want to die. But he'd rather die than throw up all the time. And Tyler would love to have his left leg back. But not at the cost of that relentless, sleep-depriving, stabbing pain. Too young to have complete say-so over his body, yet too old not to be heard, Tyler, then 15, readied his arguments, then relied on the compassion of his parents. He'd made a couple of decisions: no more chemo. And let's get rid of this brittle, broken, cancer-infested leg. "I was now ready to amputate or ready to die," said Tyler, now 18.
Tyler's parents, Todd and Connie, hated hearing that kind of talk. But they listened. "We loved him too much to force him into things he didn't want to do," Connie Copley said.
Tyler's form of cancer is as bad as it gets. In fact, there wasn't a prognosis out there that had him being alive today. But six years after first being diagnosed with Ewing's sarcoma in his ankle and lungs, and three years since the death sentence of a relapse, Tyler is starting a new chapter of life. He's got a new, state-of-the-art, remote-control left leg and, for now anyway, no signs of cancer. The uncomfortable caveat to this new chapter is that Tyler's tale comes with no guarantees of continuing. You might get sucked in with the hope and laughter and the drama and intrigue. And you might get cheated, right in the middle of the good part. That's Tyler's theater of life. But Tyler doesn't ask the question, "What if I die?" anymore. Now he asks: "What if I live?"
The living began, in earnest, with an order of onion rings, a frozen Coke and the new left leg. Almost no one lives a year after relapsing from Ewing's sarcoma. But here's Tyler, three years post-relapse, beating the odds and beating them his way. He's cynical, stubborn and quick to debate — even the most minuscule of details. Yet he almost never stops smiling. He fidgets a lot, as if his bottled-up energy is a carbonated reservoir that's been shaken and is ready to blow. And occasionally, he loses it. The smile fades as he lets rip with whatever is on his mind, reminding people that he's still around and stepping on a few toes along the way.
Connie knows what oncologists are thinking: Sooner or later, cancer will kill Tyler. She remembers the day Tyler was first diagnosed with — January 2002, when he was 13. He'd twisted his ankle, and it never stopped hurting. Eventually, a biopsy confirmed the cancer. Then, about two years after finishing a nasty bout with chemotherapy, he relapsed. It was October 2004, and the cancer was in his hip and lungs. This time, they'd found it when Tyler broke his left leg, which was brittle from all the radiation. Doctors put a rod in his leg. During surgery, they collected the bone shavings and biopsied them. "It was 100 times worse, getting that call," Connie said. "As bad as the first one was, this was that much worse. If you sat and talked to the oncologists, they'd say, 'Eventually, he'll succumb to this disease,' “she said. "But then they'll tell you they haven't seen a kid like Tyler."
Tyler is quirky, opinionated, playful, and, man, is he talkative. The teen likes his onion rings and frozen Coke, regardless of the time, before every doctor's visit. Tyler likes to tell you how good the Red Sox are, or why Ohio State can make it back to the national championship game this year. And even on the day he gets a new leg, he likes to tell stories, like the time he went on a trip with other cancer patients to the Packers' Lambeau Field and the hazing he got by his friends. "Frozen water balloons are like ice blocks," he said. "They hurt. Those guys had to have planned out their attack for a while, to get those balloons full and put them in the freezer."
He toys with doctors and physical therapists, who, when Tyler leaves, know they've had a full day's work at Children's Healthcare of Atlanta at Scottish Rite. When Karl Barner walked in one recent Friday with Tyler's new prosthetic leg — a C-Leg, a remote-control, high-sensory piece of machinery — what first mattered was how the Ohio State Buckeyes emblem reproduced on the front of it. "Wow, that's nicer than I thought," Tyler said. Barner tossed him the remote, which looks exactly like a keyless car remote. "Sweet," Tyler said. The leg didn't fit right. They couldn't make the screw from his thigh go into the hole in the prosthetic. So they drilled a hole, right beside the Ohio State emblem, so Tyler could see inside the prosthetic and guide the screw into place.
For the next two hours, Tyler learned how to walk — the way therapists and computer technicians wanted him to walk. Every step was registered on a laptop. Too much bending, not enough shifting. Don't push off that hard with your right leg. Stay on this foot that long and that foot this long. "What am I doing wrong?" Tyler asked, showing a bit of his frustration. "Show me on the computer. I don't know what it's supposed to feel like." He figured it out soon enough. But his declaration, "I don't know what it's supposed to feel like," could serve as the family mantra as they continue this journey with Tyler.
What is it supposed to feel like when you've made peace with some hard things and kept thoughts of the future at bay? What's it supposed to feel like when hope creeps back into the equation, but fear remains the common denominator?
What if he lives? For three years, cancer has been the driving force behind every decision made by Tyler and his folks, a stay-at-home mom and a Navy pilot. "I've never lived without hope, but those were some pretty dark times," Connie said. "Would I be planning a graduation party or a funeral?" At night, Tyler would lie awake in bed, in awful pain before the leg was amputated, and think about everything. "Everything goes through your head," he said. "I'd think about heaven, what my funeral would be like, what I'd be buried in, that kind of stuff."
Tyler had decided after his first go-round with chemo that he'd not go that route a second time. "It was my ultimatum," Tyler said. "I wasn't going to do that again." Some of his darkest times were a year ago, when the only thing overshadowing the uncertainty of living was the constant pain in his leg. For now, Tyler's mood is much better. All of a sudden, things like a college education just might be important. Finding the right young lady. Thinking about a career. Being a good big brother to Sara, 11, and Kirk, 14. "It's very weird, to plan life again," Tyler said. "Everything has been on hold for so long. I mean, in a way, I feel cheated. All the stuff I would have done my senior year, the fun, the goofing off the last semester. "But now, I think I'm going to start taking some classes in January, maybe go off to college next fall."
Tyler's oncologist, Bradley George, admits not knowing what to think of Tyler's case. "It's rare to see someone do this well," George said. "He's had the nicest response to the low-dose oral treatment I've ever seen. But his mother is right. If you look in a book, you'd see that if someone has Ewing's sarcoma and relapses, those people rarely, if ever, are cured. I am concerned it'll progress at some point, but then again, I'm sort of cautiously optimistic too."
Sheela Basrur Reveals Details of Cancer Battle A year into her battle with leiomyosarcoma (LMS), Sheela Basrur the doctor is coming to terms with Sheela Basrur the patient. The 51-year-old single mom and former chief medical officer of health for Ontario, Canada is girding for her "eighth and hopefully final" week-long chemotherapy treatments and finally daring to think about what's next. Widely hailed for her performance as Toronto's chief medical officer during the 2003 SARS crisis that left 44 dead, Basrur still feels the pull of public service and would love to resume working in some capacity. But she figures she'll have a full-time job in 2008 getting her strength back and, perhaps, resuming her involvement doing good deeds through the Rotary Club.
"Until I reached the one-year mark I didn't dare dream about the future because the prognosis was so grim and I really didn't want to tempt fate," Basrur said in an interview, revealing little-known details of her ordeal that began last November. Still, she thinks about the future only in "very tentative steps." Her cancer began as a tumor in her uterus before spreading to her spine, lungs and liver. "The response to treatment of sarcomas is generally not very good," Basrur states with the matter-of-fact tone of a physician.
Statistics for LMS in Canada are difficult to find, but the National Uterine Fibroids Foundation in Colorado Springs, Co., reports 1.7 women per 100,000 are diagnosed with it annually in the U.S., typically between the ages of 45 and 55. The five-year survival rate for patients in early stage LMS is 50 per cent, dropping to between 0 and 20 per cent in later stages. But, so far, Basrur's treatment appears to be working.
She was in Bradenton, Fla., last Nov. 21 visiting her sister for Thanksgiving when the lower back pain she'd been feeling for years became unbearable. "I was in terrible agony," recalls Basrur, who became a household name as the SARS drama unfolded through daily televised media briefings. "It was more than 10 out of 10 on the pain scale." Doctors found a tumor pressing on her spinal cord at mid-back, threatening to make her a paraplegic; it was removed immediately.
When Basrur returned to Toronto with the shocking news she was stepping down for the battle of her life against what had first been diagnosed as an extremely rare vascular cancer known as hemangiopericytoma, little did she know there were enough twists and turns in store for an episode of the TV series House. More tests to locate the primary tumor found the spinal growth had developed from an original malignancy in her uterus and "spread everywhere." Basrur recalls eyeing her own test results. "My lungs looked like, oh my God, a handful of golf balls and smaller objects had hit them like a snowstorm. As a doctor, I looked at that and said, `Boy, your prognosis is not very good.'"
There was a hysterectomy to remove her uterus, five weeks of radiation treatment to kill any remnants of the spinal tumor. Tissue tests sent to the lab at Johns Hopkins medical centre in Baltimore revealed her cancer was LMS, a malignancy found in smooth muscle tissue, most frequently in the uterus, abdomen or pelvis. In March, she began chemotherapy with an experimental drug that pushed her blood pressure to near stroke levels, gave her a cracking voice like a pubescent boy and left her hair intact – but wasn't working on the tumors. So she began standard chemotherapy with two different drugs. And then her hair started to fall out, leaving her with today's "bald-headed mug." "I still scare myself when I look in the mirror," jokes Basrur, who spends her days resting and occasionally going out, sometimes driving daughter Simone, 16, to school, getting groceries, seeing friends or attending events in her honor.
In October, York University presented her with an honorary doctor of laws degree and the Registered Nurses Federation of Ontario last month announced a nursing oncology scholarship in her name. "It's remarkable and very humbling," she says of the honors. In addition to the side effects of grueling chemotherapy sessions, Basrur's cough is evidence she can't shake a case of bronchitis caught in September as the chemicals coursing through her tiny frame have weakened her immune system. Fortunately, she has managed to keep her weight stable because of an anti-nausea drug that helps get her through the week-long chemo treatments at Grand River Regional Cancer Centre in Kitchener-Waterloo, where her father, Vasanth Basrur, still works as a full-time radiation oncologist. "I know if I don't eat something they're going to shove a tube up my nose and feed me that way."
The hospital is a hike from her Scarborough home but Basrur says it's comforting to have her parents nearby as she endures treatment. "I come in there looking like the Energizer Bunny, but within a few days I'm morose and depressed with my head under the covers." Back at home, Basrur finds the extra time with her daughter a luxury she didn't enjoy during long workdays at the City of Toronto and with the provincial government, where she served as an assistant deputy minister of public health in addition to her duties as chief medical officer. "We're both actually enjoying our new life," says Basrur, who worked as a family doctor before getting into the public health field. "It's not the same as it was before but it has some advantages in that I'm able to spend much more time with her. I don't have the level of stress that I used to when I was working and carrying a BlackBerry."
Basrur and Simone both enjoy classic rock, particularly The Who, and the doctor is looking forward soon to having the energy to get back to her hobbies of cooking, needlepoint and gardening. In that sense, she has written her own prescription. "What I need to really do is to recuperate and restore my health, which has probably not been great for a number of years because of excessive workloads and not looking after myself to the extent I should." Basrur expects it will be several months into 2008 before she feels "halfway back to normal" again. "Where this goes from here, time will tell," she says.
Survivors first amputee contestant to speak on "Diverse Minds, Bodies and Spirits" Chad Crittenden, the first amputee to compete on the CBS reality television show “Survivor,” will discuss "Acknowledging Diverse Minds, Bodies and Spirits” on December 4th at the University of St. Thomas. Crittenden surprised viewers of “Survivor: Vanuatu” in 2005 when he revealed that he only had one leg. At age 33, he discovered a lump on the bottom of his right foot. He was diagnosed with synovial sarcoma, and doctors amputated his leg below the knee. Recovery was quick. He completed a triathlon nine months after the surgery and 18 months later appeared on “Survivor.” Today he competes in triathlons on a regular basis and also enjoys mountain biking, snowboarding and soccer.
After his diagnosis, Crittenden said he had to do some soul searching. “When you are in an extreme situation, your true colors show. It gets down to who you are at your center, your core,” he said. One reason Crittenden applied for "Survivor" was to show the public that people with a disability or a handicap are just as capable as those without. “I wanted to go on ‘Survivor’ to dispel notions that people with disabilities are one step below able-bodied people,” he said. “There is nothing you can do about how others perceive you unless you are doing something to change their minds.” He also did it for the adventure. Crittenden’s philosophy for success is simple: “Get motivated. I just started thinking about solving the problem instead of wondering why, and trying to blame someone or wallowing in my sorrow,” he said. “I looked at how I was going to make my life normal again.”
Crittenden is a native of California where he developed a love of sports and the outdoors. He graduated from the University of California at Davis, where he studied international relations, the environment and Spanish. After teaching a bilingual second-grade class, he accepted a teaching position in El Salvador where he met his wife, Dyann. They now have two young children and live in the San Francisco area. Cancer-free for two years, he has taken a leave of absence to lecture, be a full-time dad and work on a soon-to-be-published book about fathers and parenting. He also has been active with the Challenged Athletes Foundation and Adaptive Action Sports.
Visit Buoys Children and Hockey Team When he was 6 months old, Blake Jackson was diagnosed with Ewing's sarcoma. The future didn't appear promising, what with an aggressive tumor and the surgical procedures ahead of him. He had four vertebrae taken out before he was 2. "You just don't know what to think," his dad, Jay Jackson, said Monday at Children's Hospital of Michigan, with Blake milling around a room collecting autographs from Detroit Red Wings players.
Now at the advanced age of 7, Jackson sort of fit in with the Red Wings. He's one of them, in a way. Jackson plays left wing for the Lakeland Pirates mite team. He's been cancer-free for five years. He laughs, loves baseball, spills his potato chips onto the floor and was ho-hum about being a media darling recently for newspaper and television reporters. "My favorite player is Henrik Zetterberg," said Jackson, who enjoys watching the videos on the NHL Network. Basically, he's like any other 7-year-old boy.
"It's just a blessing, it really is," Jay Jackson said. "If it weren't for a scar he has, you wouldn't know anything had been wrong. He loves hockey. He loves watching the Red Wings."
On Monday, the Wings made their annual visit to Children's Hospital, an event that's been going on for more than 10 years, and as usual, there were smiles all the way around. They're mired in a little bit of a slump, but this visit always puts things in perspective. "Sometimes it's tough to see how sick they are," Nicklas Lidstrom said. "We feel fortunate we can bring a smile to their faces; maybe bring a little joy to their holidays. It makes us feel better, too. "Some of the kids can't even be with their families for the holidays. You just try to bring whatever joy you can."
Whether it was Dallas Drake signing an autograph on a Wings jersey of a young fan, or Dominik Hasek giving goaltending secrets to a future goaltender, or every Wing shaking another youngster's little hand, the entire afternoon made everyone feel a little better. "It makes you feel good when you see these kids smile," coach Mike Babcock said. "They say they enjoy us being here, but I tell you, it makes us feel good to be here. These kids are amazing."
Every Detroit pro sports team makes visits to Children's Hospital, along with a variety of celebrities and musicians. They might not realize it, but they hold a special influence over the children. "Just imagine a little kid being sick, in a hospital, and thinking about being sick all day, and it becomes a real drag," said Dr. Herman Gray, president of Children's Hospital. "When you have these guys come in, the child is thinking, 'They're talking to me, and they're here to see me, and I must be really special.' And that's a great thing. It gives the kids something else to think about, something positive," he said.
Stories like the one about Blake Jackson bring Gray joy. He hears them often. "If I ever start feeling sorry for myself, I just go up a couple of floors, and it puts everything into perspective," he said. "The stories here are pretty remarkable."
Emily Land and Ashley Garrett never knew each other growing up, but they have a lot in common. They lived just four miles apart, in Collierville, Tennessee. Both love sports: Emily, 24, was a Division 1 soccer player, and 15-year-old Ashley, an accomplished gymnast and cheerleader. Each is a long-haired, fresh-faced beauty with impeccable Southern manners. And then there are the scars, long and deliberate, snaking down each young woman’s athletic left leg. The marks are so striking that when Emily wears a skirt out to dinner with her husband, Chris, or Ashley attends a high school basketball game in her cheerleading uniform, strangers often ask, “What happened to your leg?”
“Shark attack,” Emily sometimes answers. “But you ought to see the shark!” For those who are genuinely concerned, Emily might fess up and say, “I had cancer.” If she thinks her story could help someone else, she may reveal how a bone-eating tumor forced doctors to remove half her thighbone and replace it with a revolutionary metal implant that functions like real bone. Thanks to the implant, Emily’s left leg can move just like the other.
Emily was a college sophomore when she found her tumor, in April 2003, and started chemotherapy, followed by the surgery and more chemo, at St. Jude Children’s Research Hospital in Memphis. Ashley was only ten, in August 2002, when St. Jude doctors replaced her diseased shinbone with an artificial one. As extraordinary as these state-of-the-art limb-sparing technologies are, perhaps the most remarkable thing is that, except for the young women’s scars, no one watching as they walk or climb stairs would ever guess their secret.
Decades ago, a diagnosis of osteosarcoma meant amputation and often death. After doctors removed the diseased limb, patients were sent home with a 20 percent chance of surviving five years. The development of chemo in the 1970s markedly improved survival rates. Because of huge advances in research and treatment of pediatric cancers at centers such as St. Jude, the chances of a child’s beating the disease are now 75 percent over five years. And high-tech bone replacements like Emily’s and Ashley’s are improving mobility for survivors.
Ashley’s parents, Donna and Floyd Garrett, didn’t know what to expect when Michael Neel, MD, an orthopedic surgeon at St. Jude, pointed to the X-ray and told them there was a good chance the strange bump that seemed to appear overnight on their little girl’s leg was cancer. Ashley could barely grasp the implication of the doctor’s words. “We don’t know what this is right now, but whatever it is, Ashley, we’re going to take good care of you,” Dr. Neel said. Scans and a biopsy indicated that the egg-size tumor had not spread. But Ashley would still need three months of chemotherapy to kill any wandering cells and to shrink the tumor before Dr. Neel could remove it.
Dr. Neel said it was very lucky that Ashley’s leg, severely weakened from the tumor, hadn’t fractured during gymnastics or a recent family ski trip. The mass would have ruptured, making the tumor grow larger. Donna Garrett was even more shocked when Dr. Neel said he’d have to remove the upper third of Ashley’s shinbone. “We were prepared to do whatever it took to save her life,” Donna recalls, “but I was concerned about how this would affect gymnastics and things she loves to do. How was she going to be a normal little girl?”
To get a safe margin around the tumor, Dr. Neel would also have to remove the growth plate at the base of Ashley’s knee. This plate, the source of new bone cells, was responsible for about 40 percent of the growth of her leg. Ashley still had five more years and five inches of growth left. So the surgeon planned to use a new implant called the Repiphysis—a bionic bone of sorts that expands when activated by an electromagnetic device. It was a huge improvement over the previous generation of kids’ prostheses, which were lengthened manually by reopening the surgical incision and turning a screw to expand the leg.
The Repiphysis would require just one surgery and several noninvasive lengthening sessions every year or so. After an initial recovery period, including months of physical therapy, Ashley would be able to swim, ride a bike—even do some cheerleading.
In August 2002, after four rounds of chemo, Ashley lay on a gurney in a pre-op room, surrounded by her family and pastor. They prayed and told Ashley angels were watching over her before heading to the waiting room to sit out the six-hour surgery.
Dr. Neel made an incision on the inside of Ashley’s left leg, from above the knee joint to her ankle. He and St. Jude’s director of surgery, Bhaskar Rao, MD, carefully separated the muscles and blood vessels before sawing through her shinbone six inches above her ankle and lifting the diseased bone out of its socket. Then he replaced it with the three sections of the Repiphysis. First he attached a titanium-alloy rod to the remaining shinbone. Next he anchored the other end of the implant to the bottom of Ashley’s thighbone. Then he attached the midsection containing the expanding part and joined the pieces together by inserting at the knee a pin that acts like a hinge.
The surgery and the prosthesis would normally cost over $100,000. But St. Jude operates entirely on donations, and treats and houses all children who meet certain medical requirements and their families, regardless of income, for free.
High-tech medical innovations are not foolproof, and sometimes there are complications. That’s what happened to Emily. Since the 20-year-old midfielder for the University of Tennessee at Martin was full grown, Dr. Neel gave her a permanent, nonexpandable implant called the Guardian. The surgery went well. But a month afterward, she started experiencing pain and lack of muscle control. “Every single step hurt like a screwdriver jamming up inside my bone,” she said. In June 2006, Dr. Neel operated again. When he cut into Emily’s leg, he saw that the upper rod was spinning inside her thighbone. It had never grafted to the implant. He replaced and secured the rod. Six weeks later, after just two weeks of physical therapy, Emily put her crutches down and walked away. Her limp and the pain were gone.
In addition to getting regular checkups, Ashley went back to St. Jude every time her healthy leg grew more than a centimeter—about once a year—to have her implant lengthened. First Dr. Neel slipped a large magnetized ring, attached by a cord to a control box, around her leg so it circled the part of the implant that held a plastic-encased metal spring. He pushed a button on the control box, sending a signal to an antenna in the plastic. The plastic heated up and softened, allowing the spring to expand. When an X-ray showed the spring had expanded to the desired length, a maximum of two centimeters at a time, Dr. Neel flicked the device off and the plastic hardened to freeze the spring in place.
Last April, an X-ray revealed that the growth plate in Ashley’s right leg had closed. Now that the young woman had reached her final height of five feet, two inches, it was time for Dr. Neel to replace the Repiphysis with the stronger, more permanent Guardian. Ashley won’t need a new rod until she’s 25 or so.
Two weeks after the second surgery, 15-year-old Ashley, wearing a leg brace and on crutches, was back to enjoying get-togethers with her friends. She and her brother, Tyler, were even planning a dinner party for their parents’ 21st anniversary.
The one thing Ashley, Emily and other implant recipients cannot do is high-impact sports, which could break the implant or surrounding bone. “At first I was crushed I wouldn’t be able to cheer in a competition,” says Ashley. “I asked God a lot, Why me? But I’ve learned over the years there’s a reason why I went through this.” She was back in her cheerleading uniform, on the less rigorous spirit squad last fall.
Donna Garrett feels her daughter has been given way more than what cancer took away. She says Ashley was always kind but is even more compassionate now, an observation she made when Ashley’s three-month-old cousin died from a heart defect in 2003. “Ashley would tell her aunt that we’re going to get through this, that we all have a purpose,” Donna recalls. “When Ashley’s friends call to complain about boys, she tells them it’s not a big deal in the scheme of things. Her priorities are much different from those of a lot of other teenagers.”
For Emily, the sacrifices have been harder to swallow. While she’s grateful to be able to hike, garden and work out on the treadmill, what she really wants to do is take off on a full-speed run. “I want to feel the wind in my face and get my heart rate up like I used to when I was on the soccer field,” she says. “It’s a harsh realization because I used to be 130 pounds of solid muscle. Now I’m much curvier and not much muscle.” A small price to pay. The long process of becoming a cancer survivor, she says, has allowed her to become something else.
When she returned to college after her treatment, forced to leave soccer behind, Emily’s grades soared. She graduated summa cum laude in December 2005. And the experience has brought her and Chris, who started dating as teenagers and are expecting a baby in May, much closer.
“When we first met, hugging was awkward for him. After I got sick, he had to learn to hold me and make it okay. And he can even deal with throw-up now,” Emily says. “I always joke that cancer sucks, but a lot of really good things came out of it.”
Boy Dying of Cancer Leaves Inspiring Book About Coping With Disease Sean Collins hoped that the story of his fight against cancer would provide insights into what the sickness meant to him and to the people he loved and depended upon. He lost his battle against rhabdomyosarcoma earlier this year, just a few days after his 13th birthday. But the book he left behind about his ordeal, now a bestseller in his home province of New Brunswick, Canada offers a rare glimpse into the thoughts and feelings of a small, brave boy facing the terror of childhood cancer.
"There is medicine in this book," says Sean's dad, Chris Collins, holding up a copy of "Ten Needles." "It gives a better understanding of how children's cancer hits a family, and adults get a sense of how to mentally fight cancer, how to make the best of it. Sean speaks in simple terms, but he speaks volumes."
The book's title, "Ten Needles," refers to the average number of shots Sean endured almost every day during his four-year fight against rhabdomyosarcoma, which accounts for over half of the soft tissue sarcomas in children. The slim volume is written by Martin Latulippe based on interviews with Sean, who came up with the idea for the book, but was too weak to write it himself. The story recounts Sean's fears, frustrations and hopes as he moves through the various stages of the cancer, beginning with a small lump on his hand when he was nine, and ending on his deathbed in his home on July 9.
"People have been touched and inspired by Sean's story," Latulippe says. "It's a true story of a young boy facing a death sentence but who always maintained an amazing attitude and who focused on the importance of celebrating life."
During the four years of Sean's illness, his parents, Chris Collins and Lisette Richard, became fierce advocates for their only child - fighting an often slow-moving health care system, becoming experts on their son's disease, and railing against inadequate medical resources in their home province. It inspired Collins to run for public office. He is now a Liberal member of the New Brunswick legislature, where he continues his advocacy on behalf of families struggling with seriously ill children - illnesses that often require treatment outside New Brunswick. Sean was keenly aware of his parents' devotion and hard work on his behalf.
At the end, slipping in and out of consciousness, Sean's final words to his heartbroken mom and dad were, "You'll never know how much I love you." "He fought until the end," his mother recalls. "He was taught to fight and to try and beat this. In the end, we had to finally tell him it was alright to rest." Collins and Richard say there are lessons for other parents from their experience. They say the best thing families can do in such difficult situations is tackle the issue head on with vigor and determination. "Lean into it," Collins says. "Don't just be a victim - attack it. Get information about the disease, challenge the medical profession, challenge the services that are available and do whatever you can do to enjoy the company of your child while continuing to be a parent. The good news is the majority of children survive cancer. You have to continue to fight cancer like you're going to win."
Collins and Richard say they were amazed when they first read "Ten Needles," several weeks after their son's death, and discovered how keenly aware Sean was of their pain and fear. The couple struggled to keep their concerns and sadness away from Sean, but he saw through the forced smiles. "He knew a lot more than we thought he did about dying," Collins says.
Over 13,000 copies of "Ten Needles" have been sold in New Brunswick, and Collins says the book will be offered to hospital charities in other parts of the country trying to raise funds, especially for pediatric oncology. The book has been a labor of love for friends and family of Sean Collins. All proceeds from the sales have gone to a campaign to improve cancer treatment facilities in New Brunswick. The $10 book, available in both French and English, is distributed by Faye Editions of Quebec.
In her 33 years, Clarissa Marquez has come to know both nightmares and miracles. Well enough to understand that they are flip sides to the same thing — those unexpected events that life tosses your way.
Which is why she says now, "I never let myself get down. No matter what's happening." In her eyes, she was given the chance to move on with her life; to look for the positive and to give back to her community.
The nightmare began for Clarissa and her parents, Sergio and Linda Marquez, when she was 4. She had been limping for about a year, favoring her left leg, and nobody — neither her parents nor the pediatrician — could figure out why. Then a lump appeared on little Clarissa's lower back, in the sacroiliac joint. The orthopedist she was referred to discovered the "why" — Ewing’s sarcoma. That was the beginning of the horrible nightmare.
Just imagine what it was like: a 5-year-old child undergoing grueling chemotherapy and radiation sessions — six weeks of each. Clarissa doesn't remember much of those days — except the pain of having her hand taped to a board and a syringe inserted into a vein for the chemo treatments and of feeling so bad. "I remember being very sick," she says. She also has a permanent bruise on the inside of her left elbow from all the needle pokes for blood tests.
The miracle was that she was diagnosed in May 1979 and a little over a year later — September 1980 — she was in remission. "I was fortunate. They caught it very early." And her straight brown hair that all fell out during the chemo, grew back "jet black and curly," she says. Still, Clarissa wasn't home free; she faced years of follow-up examinations, blood tests and hospital visits. Every six months for four or five years and then yearly after that until she was in her teens.
Those daylong sessions would have been even more difficult had it not been for the Ronald McDonald House, Clarissa said. The house wasn't around when Clarissa was diagnosed. But it was when she began her follow-up visits, and a blessing it was. There was a lot of waiting time between exams but not enough to go home and get back to the hospital. The Ronald McDonald House offered a homelike place for the family to stay and other children for Clarissa and her little sister, Deanna, to play with. Children who, like her, were battling deadly diseases. Children who became her friends.
But those friendships — and others formed through the American Cancer Society's Camp Sunrise — were the root of her later nightmare. By the time she was a teenager, "I had buried more friends than any kid should have to," she said. "It became harder and harder to bury friends." One funeral sticks in her mind: "Sean's little sister kept hitting the coffin, saying, 'Sean, where are you? Come and play with me.'" For a while, such experiences caused her to back away from advocating on behalf of Ronald McDonald House or the cancer society. She didn't want those friendships.
But two personal miracles have reawakened a commitment to work on behalf of Ronald McDonald House and organizations that help cancer patients. The first was the birth of her son, Dominic Bjerken six years ago — an event that, as far as Clarissa is concerned, definitely falls in the miracle category. Doctors had told her parents that due to the radiation treatment, she never would have children. She carried Dominic to seven months and then required an emergency cesarean. That allowed the doctors to see how damaged her uterus was, and all agreed: She shouldn't have been able to carry a child. The second thing that happened was her grandmother's diagnosis of breast cancer. Clarissa was able to comfort and support her because of her own experience. And the good thing is that her grandmother's cancer is in remission.
That, combined with her growing awareness of a child's vulnerability to illness and disease, made her commit to advocacy for cancer patients. In April 2006, she organized a "radiothon" for La Preciosa — Radio 97.1-FM on behalf of the Ronald McDonald House. "We raised $16,000," she says, "and for me it was the completion of a circle. I had received so much, and this allowed me to give back."
You want to be able to say 'it will all be okay' Flicking through the well-thumbed photo album, Katy and Rosie Lamb laugh together as they argue over where and when certain pictures were taken. The album is packed with treasured photos of Gordon, the handsome son and big brother who lost his long, brave battle with Ewing’s sarcoma. The teenager was a keen pupil at Edinburgh Academy who loved playing rugby and doing watersports. And he was very close to his family - mum Katy, sister Rosie and dad Crawford - who lived in South Queensferry and did everything together, from camping trips to visits to the cinema.
Gordon was looking forward to a school skiing trip when, shortly before his 15th birthday, he complained about a pain in his calf. Several visits to doctors and consultants for tests followed but nothing could prepare them for the devastating diagnosis. "You just feel total disbelief, because you always assume it will be something else," says Katy, 55. "It was really hard for Rosie, who was only ten. And, as a mum and dad, you want to be able to say, 'everything is going to be OK'. But suddenly there were no rules and regulations. With cancer, no-one can guarantee you anything."
After he was diagnosed in January 2000, Gordon had four chemotherapy sessions, and in June of that year he underwent surgery to remove the tumor. His leg was in plaster for the next four months and he had a further 13 chemotherapy sessions. "It is quite strange going in to the ward the first time and seeing all of these children with no hair, eyelashes and eyebrows," recalls Katy. "And I think it was quite strange for his friends the first time too. And the sessions were hard for Gordon, being in crutches and on a drip at the same time. It was a struggle to do anything, even a trip to the toilet."
They were hard times for the family, too. "It doesn't sound much in the grand scheme of things, but the disruption to our routine was very hard," Katy says. "You can't put a date in your diary. If someone asks you to do anything you have to just wait and see because you don't know when the next hospital trip will be. Your life is in limbo."
Gordon missed the skiing trip and a diving trip to the Red Sea because of his chemotherapy treatment, but he still attended classes at school. Rosie says: "He would go to school at every opportunity, though he'd lose four straight days for chemo sessions, and maybe more only if he felt unwell afterwards. But he would also try to study in hospital and worked when he could."
Given the all-clear, he was able to return to the life he had enjoyed before, spending time with his friends and playing rugby. He even took part in the Great Wilderness Challenge, a sponsored challenge in the Highlands he had completed in previous years, and raised money for charity.
In April 2002, he went on a Combined Cadet Force (CCF) course. When he came back, he told his mum he had felt a pain in the side of his face. Because his monthly check-ups hadn't picked up anything wrong, doctors thought it would be harmless. But results of further tests stunned the family. Gordon had a secondary, inoperable tumor in his brain. "It was so hard for him. He wasn't just living with the psychological effects but as a teenager you are very aware of what you look like anyway, and he was taking steroids which caused a lot of swelling."
During Gordon's second year at university, more tumors were discovered. The cancer had spread and doctors could do no more. On August 1, 2004, after a four-and-a-half-year fight, Gordon died. His funeral, at Mortonhall Cemetery, was packed out with mourners.
Katy and Rosie are both supporters of the Teenage Cancer Trust and speak highly of the charity's work. "We had a collection for the trust at Gordon's funeral, and then I wanted to get more involved," says Katy. "Cancer in teenagers is different, it develops more quickly, and the trust can do research into that side of things. And until you go through what we did with Gordon, you don't appreciate how important these charities offering support are. That support has been so important to us." Another aim of the campaign is to open a separate unit for teenagers - filled with computers, TVs, pool tables and kitchens - at the Western General Hospital. Rosie says there were many times when Gordon would have appreciated a unit like this during his treatment.
"When he was in hospital he would often play with the younger kids, teaching them chess, but after his chemo he could get irritable," she recalls. "Having a separate room for teenagers where he could watch TV or have internet access would have been really good for him. He also studied for his exams while he was in for his chemo, and would have benefited from having a quieter place to do this."
Rosie, now 18, is studying medicine at Edinburgh University. She says: "I hadn't thought about doing it before, but I chose medicine because of what I encountered though Gordon - his treatment and the hospitals - and want to do something that will help people like him."
Though there are plenty of tears, there are smiles too when Katy and Rosie remember Gordon, who they describe as a brave, kind-hearted boy. Katy says: "Gordon never said 'why me?' He just accepted it and said, 'this is my cancer - this is what I've got'. He never got angry and was determined to make the most of things, which he did."
Six months to live: What would you do? When you die, will the people you love know how much you cared? That's one of the questions Janice Chaffee and Eric Hoagland grappled with after they were both diagnosed with terminal illnesses in the documentary "Six Months," which aired on the Bio Channel.
Chaffee, 55, a writer who has multple myeloma, documented her battle with cancer on a blog for her two grown sons, friends and family and composed a song for her husband of 27 years called "Not Long Enough."
Hoaglund, 33, a police officer who has metastatic chondrosarcoma, writes what might be the final chapter in his life by mending his relationship with his estranged brother, building a playground for his two-year-old daughter and rebuilding his Mustang, which he plans to leave his daughter for her 16th birthday.
More than six million people have viewed online "The Last Lecture" by Carnegie Mellon University computer science professor Randy Pausch, a father of three children under age 4 who was diagnosed with pancreatic cancer in 2006. On Sept. 18, Pausch delivered his last talk at Carnegie Mellon which he called "Really Achieving Your Childhood Dreams." It was covered by Wall Street Journal columnist Jeff Zaslow whose column and the accompanying 5-minute highlight video on wsj.com set readership and viewership records at the newspaper. Using slides of his CT scans, Pausch talked about how the cancer will claim his life in a matter of months, according to his doctors. "We cannot change the cards we are dealt, just how we play the hand," he said.
It's this sort of inspiring outlook on terminal illness that we're all drawn to, and "Six Months" offers more real-life examples. It asks: What would you hope to accomplish if you had six months left to live? Everyone, obviously, has a different answer. Some want to travel, some want to bungee jump. But most people want to leave behind a piece of themselves for their loved ones. Nobody wants to be forgotten.
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