Funding For Dan’s End Of Life Care

Dan Hawkins dreamed of enjoying the golden years of his retirement in Florida. Its beaches were a home away from home for him since his sons, Nick and Andrew, were little. He and his wife Claudia started vacationing in Hilton Head as a young family and continued their annual beach-going tradition in Destin and other Florida locations.

Retirement would also mean more time for another of his favorite pastimes: watching Bengals and OSU football. Dan played through his college years (along with rugby) and stayed engaged in the sport coaching pee-wee and grade school football when his sons were young, and later by cheering from the sidelines at Andrew’s high school and college games.

Dan had so much to look forward to when he retired in October 2023.

All that changed on May 3, 2024. Dan had just left the house when he suddenly experienced symptoms that caused him to drive off the road. He’d only gone a few blocks and was able to drive back home after a few minutes, but was still experiencing deliriousness, slurred speech, dizziness, and an elevated heart rate. On the advice of his cardiologist’s office, Claudia quickly took him to Bethesda North ER where he was later admitted.

Dan’s case proved quite complex. His elevated heart rate and blood pressure were difficult to regulate, and there was talk of needing a possible ablation. MRI scans revealed a mass on Dan’s brain, and a biopsy would be necessary to determine the exact diagnosis. To complicate matters further, his toe had an open wound that became infected, spread to the bone, and then required amputation.

Once Dan’s vitals were stable, he underwent surgery to remove ¾ of his big toe. A week later, the cranial surgeon was able to perform the biopsy and the tissue sample was sent for testing.

On May 23, just seven months after his retirement, Dan received a diagnosis that would alter his plans forever: glioblastoma.

Glioblastoma is an aggressive form of brain cancer that starts as a random DNA mutation in the glial cells, which are essential for nerve function. It progresses rapidly when cancer cells invade and destroy healthy tissue. Symptoms come on quickly, as they did for Dan, when the growing mass of the tumor puts pressure on the brain.

There is no cure for glioblastoma and the median survival rate of 12 to 18 months is abysmal. This means the treatment approach is twofold: manage the tumor to prolong life and provide palliative care.

To determine a treatment plan for Dan, doctors tested samples from his biopsy to see how cells would respond to interventions. Due to the location of the tumor, his cancer is inoperable. Dan’s care team determined that he could receive six weeks of chemotherapy and radiation, but there would be no further treatment options available after that.

Treatment began June 10, and against all odds, Dan was optimistic that he could beat this cancer. Hope, after all, is a skill, and one reinforced in the happy endings of his favorite Hallmark movies. (Yes, really – this burly, football-loving man has watched and recorded every single Hallmark Christmas movie.)

Ever the character, Dan managed to convince those accompanying him to radiation treatments to misbehave and ‘ring the cancer bell.’

In more serious moments, his love for his family was obvious. He expressed his desire to use the time he had left to set the best example he could for “his boys.” He spoke in praise of the “remarkable woman” Claudia was and the amazing job she was doing taking care of him.

But as weeks passed and his treatment concluded, the challenges of this disease grew hard to ignore. Dan suffered several falls and the symptoms caused by glioblastoma – delusion, confusion, difficulty determining past and present, dizziness, muscle weakness, and changes in personality, behavior, and sleeping patterns – were increasingly present.

On August 8, another serious fall sent Dan back to Bethesda North ER. He ended up alongside his beloved brother Steve, who was simultaneously struggling with the effects of kidney cancer.

It was during this hospitalization that MRI scans confirmed Dan’s tumor/swelling had increased. The oncologist who spoke with the family delivered a shocking prognosis: just two weeks.

Remarkably, it’s been 9+ weeks since Dan received his prognosis. During this time, Claudia, Nick, and Andrew have done everything possible to keep Dan at home and enjoy every precious moment they have together, giving him all the love and care possible.

As Dan’s cancer progresses, his physical and mental condition continue to decline and his vitals are deteriorating. Increased muscle weakness makes it impossible for him to support himself and difficult for others to move and work with him. He is unable to communicate any pain he is experiencing. He is sleeping more throughout the day, but is often restless. Moments of clarity are infrequent. He has been in and out of home hospice care, the ER, respite care, and hospice residential care.

It has been a heart-wrenching realization, but the family is no longer able to sustain the level of safety and 24/7 care that Dan requires and deserves.

Since Dan does not yet meet the criteria for inpatient hospice, and hospice cannot provide enough in-home support and care, Claudia needs to find a safe place for him.

Unfortunately, a skilled nursing facility is also not covered for Dan’s condition, as it is (ironically) considered long term. The expense for this desperately needed care is left solely with the family. At $400-500+ a day, this financial burden is unbearable without help.

Making matters even more dire, Claudia’s employer of more than 12 years recently informed her she will no longer have a job at the end of this year.

We don’t know how much time Dan truly has left. And while we can’t give this family the happy ending Dan would have loved, we can come together to lighten the enormity of their burden.

The help the Hawkins have already received – from meals, gift cards, treatment transport, to life admin and more – is so deeply appreciated. These are times no family can get through alone, and your support means the world.

Please consider making a donation and leaving a note of support. Any amount you can contribute goes directly toward the quality end of life nursing care that will make Dan’s final days more peaceful both for him and his family.

Thank you in advance for your generosity.