“I’m sorry, it’s cancer.” No matter how compassionately said, no young adult patient or family is ever prepared to hear these hateful and devastating words. An explosive sound wave, they reverberate and shatter lives in the room when uttered Within hours, our entire world was turned upside down and inside out after. The familiar landscape of life was gone. At 17 years of age, just months before his senior year of high school, Dan was diagnosed with osteosarcoma, a rare pediatric bone cancer that primarily strikes adolescents and young adults.
In shock, barely able to comprehend the diagnosis, Dan’s treatment protocol began almost immediately. It combined a seven-month regimen of chemotherapies with surgery. In September of 2006, nine inches of diseased bone was removed from Dan’s upper arm and replaced with a titanium rod. Except for brief months between February and August 2007, a period when he was off treatment, and it was hoped he was cancer free, Dan would spend each day of the next three-and-a-half years post-diagnosis actively battling the cancer threatening his life.
Armored with optimism, hope, humor, grace, faith, maturity beyond his years, an unquenchable passion for life, and an always-uneasy alliance between the 12 caustic chemotherapy agents, 18 extensive surgeries, 30 radiation treatments and roughly 90 infusions of a new trial gene therapy treatment, Dan waged war with cancer.
The journey was unfathomably difficult, a grueling, rapidly changing terrain that constantly shifted between valleys of despair and peaks of joy. Obstacles lay in wait behind every blind curve. Treasured weeks— or at times a few months— of feeling better with renewed energy, improved responses, and favorable scans bolstered Dan’s resolve to fight. His attention was firmly fixed on the horizon; at a destination point he was certain was there: a place where he would be again one-day cancer free, leading a “normal life.” Dan was a person of resolve—not of self-pity. Although bitterness or anger would have been understandable, Dan was not bitter about his situation. Disappointed, undoubtedly and at times frustration abounded as treatment and disease made life difficult. The only anger that surfaced was in response to periodic suggestions by some who, quoting statistical odds, encouraged him simply to give up– to curtail aggressive therapies and settle for “a few good months.” Dan thought the advice unconscionable from professionals dedicated to helping him heal.
He knew all well that the odds were against him. Instead of focusing on bleak numbers, he chose to live each day fully with hope and optimism. Survival stories of perseverance in the face of insurmountable odds were a source of encouragement to Dan. One of his favorites was that of Sir Ernest Shackleton and the crew on the Endurance—28 souls who became trapped at the end of the earth when their ship became lodged and later devoured by ice 100 miles off the coast of Antarctica in 1915. By some standards, it’s considered the greatest survival story of all time; cancer survivors may have a uniquely different opinion.
A huge WWII buff, Dan felt a special bond with the crew of the Memphis Belle— the nickname of a B-17F “Flying Fortress.” She was one of the first U. S. Army Air Force’s heavy bombers to complete 25 combat missions. Interestingly, enough the average crew member on a B-17 was only 20 years old. Statistically speaking, chances of survival for them was almost as bleak as for those battling metastatic osteosarcoma.
As Dan’s war with cancer intensified, he fought not only for himself but with hopes that a breakthrough with a clinical trial he was on might benefit many that he’d come to know on the journey as well as others fighting cancer worldwide. It was not to be. On Saturday, December 12, 2009, after nearly four years of heroic effort, our beloved twenty-year-old son’s exhaustive, courageously fought war with osteosarcoma ended. Surrounded by love and prayers, Dan quietly, peacefully left this world.
Twenty-one is a milestone birthday for young adults. Although Dan did not live to see his on March 29, 2010, it was one he eagerly anticipated. Perhaps, framed as a rite of passage, it symbolized the opportunity for a momentary return to normalcy. In many ways time stopped the day Dan was diagnosed with cancer. Suddenly he was a remote observer, watching friends move on with their lives, caught up in common day-to-day troubles of homework assignments and school woes; balancing part-time job issues and college concerns; boyfriend/girlfriend complexities and what-to-do-on-Friday-night questions.
Dan’s “new normal” was a sharply contrasting medical world. Mired in doctor’s appointments; blood tests; bone, MRI, PET, and CT scans; ultrasounds; lung function and hearing tests; surgeries; echocardiograms; blood transfusions; and a myriad of chemo, radiation, physical and occupational therapy appointments, this was a foreign, surreal experience of life for any late teen to thirty-something-year-old.
Dan’s journey taught us early on that experienced treatment centers for rare, and “orphan cancers” may be far from a patient’s home. We learned, too, that the best treatment centers—places with highly experienced specialists who treat complex cases daily using state-of-the-art technologies, with access to the latest advances in treatment options, and of course HOPE—may be even further from home.
Treatment regimens often require lengthy hospital stays or stays close in proximity to the treatment center. Ultimately, Dan would spend some 408 days, well over a year of his battle, living away from home and far from the immediate support of family and friends. At 18 years of age, he was too old to qualify at the welcoming, home-away-from-home, cost-free or fee reduced housing offered by organizations for families needing to stay near hospitals with children in medical crisis. Starkly limited, and far less affordable, Dan’s options were either an apartment or hotel room near a hospital. Such is the emotionally draining, financially burdensome reality for AYAs similarly in medical treatment enduring lengthy treatment stays far from home.
Through Dan’s experiences and those of families we met in our travels, we became all too familiar with the exacerbating effects of financial toxicity and the overwhelming, seemingly endless, emotional stress AYA families endure. The impact is hard hitting and lasting. Reshaping life for survivors in the same devastating intensity as natural and man-made disasters do.
It was during one of the family’s frequent trips to Houston Dan’s vision of a home away from home for young adult cancer patients was born. He knew well what was missing in each of the cities he had traveled to for treatment: a warm, comfortable, temporary home, an inviting refuge for AYAs to gather, a place to heal, to dream, to share, to engage in life and support others facing similar challenges. It would be an oasis, a welcoming place for young adults and older adolescents— a place of help and hope for AYAs in Houston and beyond.
Through the efforts of many caring, generous individuals, foundations, community partners, friends and family Dan’s House of Hope provided temporary housing to its first guest family in August of 2011. DHOH opened in April of 2014 at its current location in Houston’s Museum District—just minutes away from the heart of the Texas Medical Center. Dan would be so grateful to see how his vision and DHOH’s community have grown. Thousands of nights of lodging to hundreds of patient guests and caregivers have been provided. DHOH hosts monthly young adult support groups, regularly scheduled guest speaker and game night dinners, restorative yoga classes, meditation classes, and many other psychosocial program activities.
Those diagnosed with cancers later in adolescence or early in adult life and those with a recurrent pediatric disease have few, if any, resources serving their specific needs. Like the proverbial square peg in a round hole, this population needs more than to be force-fit into pediatric or adult programs, neither of which is the correct fit for them.
Our prayers continue that one day soon a cure for all cancers will be found. Until that day arrives, please join in our mission of caring support, providing tangible help that improves quality of life for AYAs today!
Dan’s House of Hope helps young adults cancer fighters heal through community, supportive programming and home-away-from-home services that reduce isolation, decrease financial burdens and nourish hope.
With gratitude and love,
DHOH President, and Dan’s mom
Our sights are set, please join us:
Advocating for change in public awareness and policies to help AYAs overcome obstacles preventing timely treatment access and avoid incurring financial toxicity
Growing a welcoming, connected community of AYA cancer fighters and caregivers, easing isolation and improving quality of life through shared experience and meaningful psychosocial programs
Championing free temporary housing near the nations’ best NCI recognized cancer care centers to assist AYAs aged 18-39 years old needing to travel for treatment.
Tangibly supporting AYAs with needed resources and programming until cancer’s cure is found!