Bandwagon. Soapbox. Call it what you will, sometimes I journal about things that make me passionate. Issues that prompt me to want to act, to find a way to help and make a difference.
We all have causes. I know this and I honor the responses we have each made to the challenges that have touched our lives. You have yours. I have mine. We can’t do everything, but we can choose to care and support those efforts that move us. We can donate time, talent or treasure to the causes that speak to us.
In just my town of Ipswich, 11 athletes will participate in the Pan Mass Challenge (PMC) bike ride this weekend. In total, over 5,500 cyclists will participate. They’ll start from Wellesley and Bourne in Massachusetts. Many will end in Provincetown, although there are several routes; they’ll ride between 25-110 miles over one day and 153-190 miles over two days. They come from 36 states and eight countries. There’s approximately one volunteer working to support every two riders. The youngest riders are 13 and the eldest is 88.
The PMC is the single largest athletic fundraising event in the nation. Last year, about 230,000 individual contributions were made to support these cyclists. This year’s goal? Raise $36 million for the Dana Farber’s Jimmy Fund. This event also provides almost two-thirds of Dana Farber’s annual revenue to support groundbreaking cancer research; 100% of tax-deductible contributions go toward this effort.
As I’ve mentioned before, the research at Dana Farber is revolutionary. There are a handful of institutions around the world (most of them private and supported by fundraising initiatives such as this one) that pioneer most of the cancer knowledge base and treatment protocols used in the world today. Dana Farber is one of these leaders, and their research and treatment methods set the gold-standard of practice used in clinics and hospitals around the globe.
Their teams and their knowledge sustained our daughter and sister Jessie for six years while she lived with leukemia (the best-of-the-best kind of leukemia, if you have to get it, as we were once told). Statistically, Jessie had all the best chances to go through the traditional, effective 2-year protocol and come out a survivor. These days, about 87% of all children treated for this type of leukemia will be long-term survivors. (Even 30 years ago, that number was much lower, so Dana Farber has made tremendous improvements in survival rates.)
Yet almost from the start, Jessie was one of the kids on the rare side of the experience; she was constantly beset with infectious challenges. She almost died on day 10 after diagnosis, over a span of eight hours, as her body shut down, not from cancer alone, but from the infection that had set in. Her oncology team saved her then, by identifying the bacterial cause and treating her aggressively with the best pairing of antibiotics to stop its progression. She endured numerous complications from that interlude, had parts of her body surgically removed and altered as a result, but she lived. There were many more bouts of infections, not all of them so dangerous.
When she relapsed the first time, and we couldn’t identify a close genetic match for a donor for a bone marrow transplant (another statistical surprise for all of us), Dana Farber used an alternative protocol, much more aggressive, that lasted another two years. After she relapsed a second time, Dana Farber recommended another option for transplant; we used stem cells donated anonymously by parents from their newborn’s umbilical cord. The transplant itself was successful; Jessie’s body populated with the new healthy cells of her donor … her blood type and cellular footprint changed. Sadly, aggressive infectious complications combined with a much-compromised immune system ultimately challenged her body too much, and she died 101 days after transplant. Six years after being diagnosed with leukemia.
These bare paragraphs don’t begin to articulate the depth of our family’s journey. They’re just an outline of an illness, and don’t tell you about Jessie herself. All her passions: theater, swimming, dance, karate, bike-riding, dog-care, kindergarten-first-second-and-third grade, books, card games, soccer, drawing, conversations, friends, and family. She practiced how to ride a two-wheeler, but still used training wheels. She earned an orange belt in karate. She began to read on her own just weeks before she died. She had a crush on a boy in her grade. She dressed in black biker boots and red sparkly Oz shoes. She wore flowing princess gowns, bald or not. She went on father-daughter dates with dad. With her sister Sarah, she ran the Rotary 5K Kids Course. She put up mom’s hair in crazy do’s. She earned a soccer team medal. For one birthday, she raised money and supplies for the local animal shelter. In school, she led an act of social justice in the cafeteria to prevent ostracizing of another child. She performed in a community theatrical production while on treatment. She also traveled to England while on treatment. She savored Zumi’s chai tea, black olives, sushi, spaghetti with “sprinkle cheese” and sauce on the side, chicken and lo mein noodles, pancakes with syrup, and mint-chocolate chip ice cream. She went to the top of a ski slope, rode on skimobiles and jetskis (go fast). She also had temper tantrums, threw things, swore, yelled, drew in permanent marker on furniture, hid with the dog when we looked for her, liked to win even if it required inventing new rules for the game, preferred to be the boss in most situations, preferred the limelight and the liberty of choreographing her own dances or writing her own songs, without practicing enough to know the basic steps or musical chords, teased her sister relentlessly, and sometimes “hated us.”
Let me be clear. She was a little girl, compromised by a mortal illness, but living life as boldly as possible, despite that challenge. She wasn’t a saint, an angel or a martyr. She was “just Jessie,” but that means a whole lot, if you knew her.
Most of what Jessie accomplished, she did while on treatment. Two-thirds of her life was lived on treatment. Her lifespan was meaningful and vibrant, in great part because Dana Farber’s teams found ways to keep the cancer in abeyance and also to balance out quality of life with effective treatment. Nothing stopped her. And she changed hundreds, possibly thousands, of lives, simply by “living large” despite leukemia.
Anything I say cannot fully describe our family over those years. We have changed markedly from the family who first started this journey almost eleven years ago.
Sarah grew up from a naive second-grader into a middle-schooler who’d seen almost every difficult side of human existence, even before lost her sister. She stopped being the little girl who imagined she was a horse or a puppy and grew into a soccer player, on-again/off-again theatrical participant, saxophonist, committed dancer (modern, jazz/hip-hop, ballet), Honors student and gifted singer (solo and chorus). She helped to shape our family’s foundation, Bright Happy Power, and its work at Childrens Hospital with young cancer patients. She volunteered for InterAct (high school Rotary service club) and loved the mission trips with First Church’s youth group; that’s how she connected hands-on with spirituality. She is determined to help teens in abusive dating relationships or living with other traumas. And about becoming a pediatric oncology nurse. Her life grew more, not less, complex after living through Jessie’s cancer experience.
Chris? Became a partner in his architecture firm during the years of Jessie’s original diagnosis. During the most demanding parts of Jessie’s treatment, he was Sarah’s primary caregiver (took her to school every day, and was home every night to give her dinner, do homework and put her to bed), yet also managed to visit the hospital a few hours every day or so, and take the weekend hospital shifts, while working fulltime. He joined and remains active in the Rotary Club, a service organization that works locally, nationally and internationally on health and education issues. He’s also become an avid cyclist and serves as a youth group leader and Deacon in our church. The only thing more important than these causes? His family: we have always come first. He will set aside any other commitment to be available when he is needed; that has never changed.
These sketches make both of my daughters (and my spouse) sound all glowing and goody-two-shoes, and anyone who has known them, realizes they are each real people and far from perfect. I have certainly journaled and complained (sometimes in very gentle, politically-correct terms) about the less-than-picturesque moments inside our family. Like all of us, my family members (living and departed) are each complex, imperfect and vitally intricate in character: gifted, troubled, challenged, determined, intelligent, cranky, beautiful (okay, handsome for Chris), moody, selfish, generous, always changing and growing.
My narrations cannot really depict the many Dana Farber and Childrens Hospital care providers who made Jessie’s life so rich, because she spent so much in their care. Many of them remain close friends and are still part of our lives. We had primary teams that followed Jessie for six years. Many people knew her from her frequent visits to their stations or services in the hospital or clinic. And some people we met just a few times, or never saw at all, although they helped us. Nurses, doctors, surgeons, oncologists, geneticists, transplant specialists, pain management specialists, infectious disease specialists, GI specialists, lung and cardiac specialists, nutrition specialists, eye doctors, dentists, clinical assistants, nursing assistants, technicians, respiratory therapists, radiologists, radiology oncologists, lab technicians, pharmacists, anesthesiologists, therapists, counselors, playroom specialists, resource room specialists, medical clown units, music therapists, art therapists, volunteers, and even a visiting dog! Can you imagine how many people were involved in her life and her care?!
Surely you can understand why my husband Chris and daughter Sarah will ride this weekend. We didn’t have a happy ending, but we had a special, memorable life together. Cancer didn’t define us, though it certainly shaped much of our life as a family.
We want even more for other children, other families. We want happy endings for everyone. Actually, we’d like empty oncology units and transplant rooms and eventually we’d like to put those units of the hospital out of business, because everyone is cured, and cancer is an archaic fact.
Although Dana Farber and other research organizations have improved the odds for many children and adults, we’re not done yet. Not even close. All of us know, or will know, someone affected by cancer. It might be in our own bodies, or diagnosed within our immediate family or a close friend or colleague. It will touch your life, if it hasn’t already.
Our goal, for now, is to work toward happier endings. To tell anecdotes with more satisfying results and even greater chances of long-term remission and healthy lifespans. We have come a long way. 50 years ago, leukemia was a death sentence for virtually all children. Now their chances are amazing. The same is true for many other pediatric diagnoses, though not all forms of cancer have such good outcomes.
Regardless of how optimistic the statistics may be, it’s all or nothing when it’s a single life. Sure, the chances of survival are about over 80%. But you can’t be 85% cured. In the end, you have it or your don’t. You stay in remission, or you don’t. It’s 0% or 100%. We want 100% for everyone.
Eventually, you will be able to be vaccinated to prevent some forms of cancer. Or there will be a genetically-tailored response to your specific cancer, that will target only the bad cells and not harm the remainder of your body on a cellular level, as it arrests and eliminates the cancer. It’s begun already.
For more facts and figures, I offer you these resources:
- PMC info about cancer
- American Childhood Cancer Association (formerly Candlelighter’s) information about childhood cancer
- American Cancer Society’s overview of cancer (basic)
- Dana Farber
- Dana Farber’s healthy library
Our town’s local weekly newspaper, the Ipswich Chronicle, interviewed our PMC participants. Movingly, they asked the question, “In one word, what emotion best captures your experience in the Pan Mass Challenge?”
The answers in our town were these:
- Chris Doktor: Gratitude. I continue to be grateful for that I can ride in memory of my 9-year-old daughter Jessie and do so with my surviving daughter Sarah. I’m grateful that I can share this experience with her for the fourth year. I am also grateful Dana Farber kept Jessie aliveby keeping her cancer in check for six years. I am grateful research continues to expore answers to this dilemma we call cancer.
- Bill Gram: Faith.
- Bob Caruso: Inspiring.
- Sarah Doktor: Challenging.
- Diana Lannon: It’s difficult to distill down to one word what emotion best captures my experience in the Pan Mass Challenge. I actually tjought about I on my ride today. I would say the words are gratitude and love.
- Paul Slack: Sorry but I have three – love, sadness and hope.
- Logan: Transformational.
Me? I’ll be there at water stops and the finish line with camera, extra water, emergency gear, and cow bells. Clang-clang! Someone has to be the crowd along the sidelines for this event. When Chris was asked by the Ipswich Chronicle reporter about his favorite part of the ride? He answered, “Seeing all the people along the route – waving, offering water, holding signs of thanks and encouragement, reaching out to touch a hand … as well as arriving at the first water stop — all the excitement and enthusiasm of the volunteers is inspiring!”