Team A&W Survivorship

In June 2016, Adam and Whitney (Team A&W) received the devastating diagnosis glioblastoma, a type of aggressive, incurable brain cancer. Adam has now lived with this terrible disease for three years; a disease that often kills patients within months. A&W are raising three young children, with knowledge of Adam's limited life expectancy. The five-year survival rate for glioblastoma is a grim 5.6%

Whitney and Adam have lived in the open with blogging, speaking, and wearing their hearts on their sleeves. The duo are tireless advocates for the brain tumor community. They each maintain popular peer-to-peer support blogs that help countless other patients and care partners facing brain cancer. Adam is a regular speaker in medical education and research settings to promote the patient perspective in medicine. A&W have attended advocacy events in Washington D.C. to advocate for increased medical research funding, and after two years of local fundraising, with the #TumorTakedownTailgate, Adam and Whitney have spearheaded the effort to raise thousands of dollars toward brain tumor research. Adam co-facilitates both a monthly Twitter chat for patients and care partners and a monthly brain tumor virtual support group.

The problem they face after three years of survivorship is summed up in a recent National Cancer Institute (NCI) report: "patients with malignant brain tumors accrued health care costs that were 20-times greater than demographically matched control subjects without cancer."

Despite Whitney's tireless work with four (yes, four!) jobs (1. inpatient occupational therapist; 2. sub-acute care for the elderly occupational therapist; 3. developmental preschool occupational therapist for children; and 4. part-time yoga instructor), and Adam's part-time work and occasional honoraria for public speaking, plus disability benefits, Whitney and Adam close the monthly budget gap with credit cards. Copay expenses go toward medications, specialists, and their share, after insurance, of the $115,000 brain surgery that gave Adam the best chance at longer-term survival.

Adam and Whitney are faced with the following impossible questions:

Do we spend on medications or kids activities?

Do we pay copays for the best doctors and mental health professionals for our kids or take trips to the zoo and purchase new clothes for school?

Do we allow Adam the freedom to speak at medical conferences, publish articles, and continue writing to do his part to reform healthcare or exhaust all of his energy reserves working as much as his Social Security income cap (approximately federal poverty level) allows?

Do we maximize each day of Adam's limited life that remains, whether that is three months, three years, or thirty, or sit at the dining room table with Whitney for another month worrying about bills?

The choices Adam and Whitney make are choices of personal goals and values. Whether your values align with theirs, influences your decision to help in the way they are asking. If we are not so aligned, that is OK, too, we are still in community.

For those who have helped Adam and Whitney, including friends, family, siblings, parents, cousins, members of their faith community, former professors, and the list goes on... We thank you!

Your generous contribution toward meeting our goal will create the breathing room necessary for Whitney and Adam to meet their monthly needs this Fall, while paying down the debt they have accrued as a family of five, facing a terminal cancer.

A&W | #AandWTumorTakedown
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Adam Hayden
Greenwood, IN

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