A Year in the Life
Charting the journey over 365 days of living with GBM
It Takes a Village to Keep Moving Forward
Julie’s GBM diagnosis occurred just over 13 months ago. At MissionGBM we have written previously about the shock of receiving the news and the process by which Team Julie was assembled to fight back against GBM using a personalized treatment protocol informed by state-of-the-art medical science.
Julie’s first post-surgical treatment session began on January 19, 2022 in the basement Stereotactic Radiation facility of Thomas Jefferson University Hospital for Neuroscience (Philadelphia). On the day before, her long dark hair was completely shaved off in preparation for the initiation of treatment with Optune TTF arrays.
What a great time to investigate fashionable headwear. Over the past year, Julie has amassed an impressive collection of surgical scrub caps in every imaginable design (Thank You - Stephanie Rakestraw, MD and the universe of Etsy creators), and some very stylish head wraps from Masumi.
One year later, Julie is feeling good; is very active; is enjoying travel to see family and friends; and is excited to see how Scott and his Biotech colleagues plan to focus their attention and talents on improving brain cancer R&D and care delivery.
We have gratitude every day for the dozens and dozens of doctors, nurses, technicians, scientists, patient assistance representatives and friends who have kept the entire show moving inexorably forward over the past year. You all are #BeyondGreat.
On Being a Caregiver…and Husband, Father, Advocate, Troubleshooter, Scientist, Biotech Entrepreneur…and Cat Manager
When a family member is diagnosed with GBM, the normal rhythm of life is immediately upended. The routine becomes unusual and the shared responsibility of maintaining a household is altered. There are no easy days.
The top priority is making certain that customized care protocols are designed and implemented as efficiently as possible. Contemporary American healthcare systems conspire at every turn to thwart efficiency and randomly throw Chaos Monkeys into even the most mundane processes. The left hand does not talk to the right hand…ever…so Scott must employ “trust-but-verify” tactics with everything…constantly…without exception.
Then there is the Special Kind of Hell occupied by insurance plans, which silo every aspect of care in order to drive down payment independently in each silo, thereby destroying any possibility of coordinated, optimized care designed to yield the best possible outcome for the patient. That approach simply does not work for complicated, personalized care protocols! It must be swept aside in favor of outcomes-based care delivery. But I digress.
At a granular level over the past year, the accounting looks roughly like this:
Shave Julie’s head every three days and change TTF arrays (completed about 120 times).
Meet with various members of Team Julie at least once per week to review clinical and molecular data; interpret the data in the context of monitoring treatment progress; and plan for next steps.
Drive to CVS to pick up more than 50 prescriptions. Julie does not drive anymore given the risk of seizures.
Coordinate care schedules with the Thomas Jefferson University Health System care units and the various Specialty Pharmacy silos that Julie’s insurance plan has erected in our path (cue the Chaos Monkeys).
Given Julie’s immunocompromised status, minimize her exposure to community-acquired infections (COVID, other viruses, soil microbes from gardening and pet care), which means doing all of the shopping, errands and visits to the veterinarian (and cleaning the litter box over 750 times).
Spend several nights per week between midnight and 4am reading clinical and scientific literature, and then setting up meetings with the best people to discuss advanced care protocols.
Launch MissionGBM to raise awareness about brain cancer and what is clinically possible with the right resources, and then connecting patients and their neuro-oncologists all over the world with such resources.
And now, terminating his retirement and going hard at reimagining brain cancer R&D, care delivery and the investment capital required to affect substantial improvement of the patient journey and outcomes. Once an entrepreneur; always an entrepreneur.
As Julie’s caregiver, Scott has made maximal use of his science, engineering and clinical research background to break Julie’s care plan into unit operations, and then swarm each task with data and evidenced-based actions and decisions. We are fortunate to have the experience, resources and understanding of the syntax that 30+ years of life science entrepreneurism brings.
However, we also recognize that many brain cancer patients are not as fortunate, and do not have access to such resources. Creating new entities and methods to socialize access to state-of-the-art information and resources is now our Mission.
Onward!