315811_2373254016509_1477764823_nShortly after turning 17, in the early summer months before his senior year of high school, Dan was diagnosed with osteosarcoma, a pediatric bone cancer that primarily strikes adolescents and young adults.  No matter how compassionately said, nothing can adequately prepare a patient or family to hear, “I’m sorry, it’s cancer.”  The explosive percussion of those devastating words and their deafening effect turned our world upside down and inside out within a few short hours of being uttered.  Just that quickly, the familiar landscape of life was gone.

In shock, barely able to comprehend our new world, the first 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 following diagnosis actively battling a cancer that threatened 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 twelve caustic chemotherapy agents, eighteen extensive surgeries, thirty radiation treatments and roughly 90 infusions of a new trial gene therapy treatment, Dan fought his 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.  But then, too, treasured weeks—sometimes months—of ‘feeling better’ with renewed energy, improved responses, and favorable scans bolstered Dan’s reserves and 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 again one day be cancer free and leading a ‘normal life’.

Dan was a person of resolve—not of self-pity.  Although some bitterness or anger would have been understandable, Dan was not bitter about his situation.  The only anger I saw 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 this to be unconscionable advice, especially from individuals professionally ‘dedicated’ to his healing.

He knew, all too well, that the odds were against him, but instead of focusing on bleak numbers he chose to live each day fully with hope and optimism.  Dan took encouragement from true-life survival stories of perseverance against insurmountable odds.  One of his favorites was that of Sir Earnest 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—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, 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 might benefit many that he’d come to know on the journey and all fighting cancer worldwide.

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 landmark birthday for young adults.  Although Dan did not live to see his on March 29, 2010, it was one he was eagerly anticipating.  Perhaps its ‘landmark’ status symbolized an opportunity to somehow ‘catch up’ to his peers.  In many ways for Dan, time had stopped the day he was diagnosed with cancer. While nearly all his friends moved on with their lives, caught up in common day-to-day worries of homework assignments and school woes; part-time jobs and money matters;  boyfriend/girlfriend and what-to-do-on-Friday-night issues;  Dan’s ‘new normal’ became his medical world.  He found himself mired in doctor’s appointments; blood tests; bone, MRI, PET, and CT scans; ultrasounds, chemo therapy treatments, surgeries, lung function tests, hearing tests, echocardiograms, whole blood and platelet transfusions, radiation therapy, and  physical and occupational therapy appointments.  As hard as he tried to return to his old normal, the new always seemed to pull him back—like a gravitational force tugging him away from achieving personal goals he desperately wanted the chance to fulfill, wrenching him away from his plans for the future and from time with friends, and relentlessly ripping him away from dreams about life beyond cancer.  With an always-amazing spirit, he just forged ahead.

We learned early in Dan’s battle with osteosarcoma that the nearest experienced treatment center for rare childhood and pediatric cancers may be far from a patient’s home.  We learned, too, that the best treatment centers for rare orphan cancers—places with highly experienced specialists who treat complex cases daily using state-of-the-art technologies, the latest advances in treatment options available without delayed access, and of course HOPE—may be even further from home.

Treatment regimens often require lengthy periods of hospitalization or hospital accessed therapy.  Through our own experiences and the experiences of families we met in our travels, we witnessed first-hand how depleting and heavy the emotional and financial burdens of living away from home can be in the pursuit of necessary treatments.

Ultimately, Dan would spend some 408 days, well over a year of his battle, living away from home and the close at-arm’s-length support of family and friends.  ‘Too old’ at eighteen for most of the welcoming home-away-from-home programs that offer support services to children and their families living far away during a health crisis, Dan’s options were comparatively stark and limited: a hospital room, or an apartment or hotel room near a hospital.  Such is the reality for most AYAs similarly in medical treatment lengthy distances from home.Dan and Donnie

It was during one of our frequent trips to Houston that Dan’s vision for a home away from home for young adult cancer patients was born.  His vision: an inviting refuge for AYAs to gather—a place to heal—to dream, to share, to engage in life and try to recapture a little bit of ‘normalcy’.  Dan’s house would be comfortable, safe, affordable “… with a good sound system…,” plenty of gathering space, and (related to a keen interest in the culinary arts) have a large, enticing, “always open” kitchen.  It would be a welcoming place for young adults and older adolescents…a house of hope in Houston.

Inspired by Dan’s incredible journey of unwavering determination, deep faith, and unending hope dedicated to all young adults—past, present and future—bravely battling cancer, family, friends and a growing army of supporters are resolute in seeing Dan’s House of Hope become reality.

Those diagnosed with cancers later in adolescence or early in adult life and those with recurrent pediatric disease have few, if any, resources serving their specific needs—ones that are dedicated to supporting the physical, emotional, and spiritual needs of young adults with a home away from home while they undergo treatment.  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.

Dan’s House of Hope helps young adults fighting cancer heal through community, supportive programming and home-away-from-home services that reduce isolation, decrease financial burdens and nourish hope.

It will take many hands, hearts, and talents coming together to grow Dan’s House of Hope.  Please explore our website!  Learn how you can help and get involved!  Check in often on our progress!  Our prayers continue that one day soon a cure for all cancers will be found!  Until that day arrives, working together we can make a difference in the lives of adolescents and young adults (AYAs) who need tangible help today!