In 2021, when our cancer path led us across the country for trial medicine, our family was forced to adjust.
Suburban living to a sky rise apartment. From a minivan driven around an expansive Target parking lot to crazy Uber drivers and no parking, anywhere, ever. Some days it felt like we were small fish in a big pond, other days it felt like we were on a grand adventure.
Philadelphia offering the opposite of nearly every detail of our life.
We rode the waves of the grand adventure as long as we could. Coca Cola in champagne glasses at the 28th floor bar of our apartment every day after clinic. Daily donuts from Federal Donuts, that one location on a street that I swear is actually an alley. Late night walks across the Walnut St. bridge of the Skyukill to that one rolled ice cream place across from Rittenhouse Square. We'd walk home and discuss how many episodes of Tingman we'd have time for and agree laughing, "as many as we want on Philly time!"
What did bedtimes matter when the only plan for the next day was to sit in a clinic chair and be pumped full of cytotoxic chemicals? Chemicals so powerful you also had to have a three-hour post-hydration drip so your kidneys didn’t cease to function.
We indulged in the grand adventure for what felt like forever, but it turned out to only be about 2 weeks before both Beau and I were craving some routine. We decided we would start eating real breakfast, that wasn't donuts, and going to what we lovingly called "actual bed", which was anything before midnight. We also thought we should maybe consider school. Textbooks and times tables seemed impossible to get behind. Wondering if my child would even live to see 2022, I had bottom of the barrel gumption to force him to memorize multiplication facts.
Actual Bed and Actual Breakfast
So we agreed that the we would eat more veggies, and sleep more hours, and for learning we would get an annual pass to the Franklin Institute and go more days a week than we didn't. The Franklin Institute is an amazing museum in the heart of Philadelphia that we had discovered during our very first visit and immediately loved.
And so it was. Our life, completely derailed, felt a small bit back on track as every afternoon. After our morning at a cancer clinic, we would wander the halls of the Franklin Institute and learn about the science of sounds or the history of flight. If we timed it just right, we could catch the live science show on Combustion by Mr. Fox.
We visited the Franklin Institute no less than 20 times. I know that place better than I know any museum, zoo, children's place from our hometown.
A City We Couldn't Wait to Leave
Thankfully, our grand adventure in Philly eventually ended after a year of on-and-off, but mostly on, trial medicine and soon we were only traveling back to Philly quarterly, and after a couple more years, semi annually.
A city that we couldn't wait to leave became a place we returned to with a laundry list of places we had to hit- one being, the Franklin Institute. We would plan our flights around a couple of hours at the museum after clinic. Philly: food eaten, bloods drawn, history taught.
An Easy Yes
When the Emily Whitehead Foundation reached out earlier this year and asked if we were interested in speaking at a series of events they were putting on, it was an easy "yes." It's always an easy "yes," when it comes to them. I joke that I'd walk in to traffic for the foundation. I am mostly kidding, but not really kidding at all. I'm here, send me.
The event series was a very cool opportunity, and one that allowed us to step into a space where science, industry, and patient experience all intersect. The long and short of the event series is: ScaleReady, a biotech company, created a device called the G-rex, built a very successful business around it, and is now funding grants for innovative study of anything cell and gene therapy. As part of the grant program, in 2026, they put on a 13-city tour were grant recipients come together to share their findings. The Emily Whitehead Foundation partnered with the company, ScaleReady to spread awareness about the patient side of the industry. As such, each event has a section of the program given to conversation with patient advocates.
The first event they wanted us to participate in was in Philly in February, perfectly timed to overlap with our semiannual clinic visit. We would go to clinic in the morning and then join up with the event in the afternoon.
The event’s location: The Franklin Institute.
Naturally.
More next time on the actual event, the meaning of the multiverse, and how a late-night trip to Wawa is what Philadelphia will forever and always actually be about.
For those interested in learning more about the ScaleReady initiative and the work being supported through this grant program, you can read more here.
No comments:
Post a Comment