Cancer advocacy: How one man and his family have coped with glioblastoma

APT AdamHayden x
Adam plays a board game with his sons Gideon and Noah. Image credit: Anna Powell Teeter/STAT

[Adam and Whitney Hayden] waited to find out if today was the day they would learn that the cancer had started growing again.

That morning, they had had donuts to celebrate the third birthday of their youngest son, Gideon, who vaguely understood that his dad had a “brain boo-boo” and who was 9 months old when his dad was diagnosed with glioblastoma. …

This was their routine: Every two to three months, they were back in this office, and Dr. Edward Dropcho, a neurologist at Indiana University Health, would tell them whether Adam’s latest MRI showed any cancer activity. …

They couldn’t, however, know when that would be. It could be in three months, or three years, or today. …

Since his diagnosis, he had waded into the world of cancer advocacy, spinning his circumstances into new purpose. But he and Whitney have had to balance that against enduring dreams that might go unrealized, the daily costs of living with cancer, and preserving the family life they had built.

Related article:  Patients with suicidal thoughts can be included in depression clinical trials, FDA says

How do you know how to spend the little time you have left when you don’t know how little time that might be?

As he met other brain tumor patients, it became even clearer. Many were so far advanced that they couldn’t communicate. He could still speak, and speak well, so he would speak for this new community.

Read full, original post: Not if but when: After a diagnosis of brain cancer, a young dad and his family grapple with the uncertain time he has left

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