We just returned from traveling to Washington DC. The driver of our trip was National Brain Tumor Society’s Head to the Hill, an advocacy event held every May. Basically it was meeting other brain tumor patients, care partners and advocates to petition Congress for funding and legislation affecting brain cancer patients and research. I had been wanting to join the event for quite sometime, but getting our ducks in a row was problematic. With the pandemic, like many others, I was able to participate over video chat. This year the event was in-person, and I was also invited to a Quality of Life (QoL) roundtable the day after. So we made it happen.
Rather than flying in and out, we decided to make the trip by car and see some sights on the way. We basically headed north to Little Rock, then cut across Tennessee to North Carolina, and then up to DC. Some highlights along the way were:
- Visited Susie’s sister in Fort Worth
- Toured Clinton Presidential Library and Museum
- Saw Loretta Lynn’s Ranch
- Took in a few Nashville sights (Music Row, Capital Mall, Grand Ole Opry)
- Saw the Charles White exhibit at Hickory Museum of Art
- Visited with Susie’s brother and family in Chapel Hill
- Visited with Susie’s sister and family in the DC area
For places that required a lot of walking, like the Clinton Library, we got a wheelchair to make it easy for Susie to get around and enjoy with ease. We also combined these stops with a meal, which we often split/ shared plates. Of all the sightseeing stops, I think the Clinton Library and Charles White Exhibit were the best. Nashville’s State Mall was also very impressive, but we were just not in the right mind for commercialized music venues.
As to Head to the Hill, Susie’s sister got us a wheelchair. So getting Susie around and about was perfect. Some of the folks I have worked with on the Count Me In Brain Tumor Project and the Low Grade Glioma Registry OPTIMUM Project were at Head to the Hill. So, we got to meet up with each other, and they were all excited to physically meet Susie. We did a group dinner the first night, which was good fun.
The second day of Head to the Hill was meeting with our congressional representatives. I knew getting Susie up early and checking out would be very difficult and less than pleasant for her, so we agreed she would stay in the hotel and sleep in the morning. I went and met with staffers for Texas Senators, and then woke Susie, checked out of the hotel and took her to meet with Congressman Lloyd Dogett‘s office. Susie was really excited about the meet up, as she had met Congressman Doggett in 1982 when she worked on Garry Mauro’s 1982 election campaign. Unfortunately the congressman was traveling, but his staffer was awesome.
Susie also met a very fun group from Washington state. As they were heading off to visit with their representative, she asked if we could tag along. I have to say our meet up with them was fabulous. The interaction with the staffer was engaged and enthusiastic, and Susie added a bit of brevity with purpose to the conversation. I do hope we participate in the event again next year.
As to the QoL roundtable, it was at a different venue with a mix of clinicians, researchers and brain cancer patients and care partners. Again many of whom I had engaged with on-line in a variety of capacities. So it was a pleasure meeting them in person. As this was a relatively large group, the facilitators used the World Café method. I expect the content of which will be distilled, prioritized and funneled into a few key actionable initiatives/ grant proposals. I look forward to engaging with its follow-on activities.
With the brain cancer events completed, we drove straight home so we could celebrate Mother’s Day with Susie’s mom. Susie’s mom had turned 90 this year. A richly rewarding trip, indeed.