Hi friends,
My name is Courtney & the reason for this fundraiser is to help my brother, Brion (age 43), afford & manage the post-surgical and rehabilitation treatments, therapies, in-home care, medical costs & equipment associated with his fight against brain cancer and recovery from ischemic stroke, very little of which is covered by insurance and most of which will soon become the responsibility of Brion and our family.
About my brother, Brion:
For as long as I can remember, I’ve always looked up to my brother; both out of admiration for his fearlessness to try absolutely anything once but also for his uncanny ability to somehow always come out on top through any difficult situation he’s faced; and not just on top but even better than before. While I opted to walk the more straight and narrow path throughout much of my life (often joking that he taught me what not to do for fear of getting in trouble with my parents), he remained solid and steadfast in his approach to life—fearlessly challenging the status quo and taking leaps upon leaps of faith that have led him down tremendous paths of achievement.
My brother is…
- The first person I go to if I ever need a good laugh, and not just a little laugh but the best kind of laugh—genuine, full-bodied, stomach hurts, face contorts, tears streaming down your face, spit out your drink, big raucous kind of laugh. The kind that oftentimes only the people who know you best can muster out of you.
- An avid reader who overcame a reading disorder as a child and can now most often be found reading 1 of maybe 7 books at the same time on anything from Greek Mythology & World Religion to Ancient History and the I Ching.
- A curious sort and a tinkerer of technology. He received his much deserved and long sought after BS degree in electrical engineering from USF a few months prior to his diagnosis—meaning he was able to achieve a degree in one of the toughest fields of study all while (very likely!) battling brain cancer.
- A self-taught classical pianist with an unwavering passion for music and dance. Whether he’s playing the likes of Bach & Beethoven or dancing the night away to Soul Train or Salsa, music is his first love and greatest source of freedom and self-expression.
- A student of life and seeker of experiences over material things. From his time serving in the US Navy and defending our freedom during 9/11 attacks, to broadening his horizons by living in Italy for 6 years and learning to cook and speak Italian, then to his recent trek to Nepal for spiritual enlightenment and receiving a 200hr yoga teacher training certificate (while battling brain cancer!), throughout his entire life Brion has always been and has remained fearless.
Even now, as he faces the absolute greatest challenge of his life, he has remained ever optimistic and, remarkably, grateful for this experience—viewing this chapter of his life as a gift and part of his deep inner journey of transformation (i.e. The Hero’s Journey).
It is this mentality, positivity, and again uncanny ability to prevail that gives us the hope and strength that he’ll be able to come out on top, just like all the other times he has before.
Brion’s Cancer Journey:
In August of 2022 Brion, age 43, was diagnosed with Glioblastoma (brain cancer) and underwent brain surgery + chemo and radiation. Following this, he dedicated the past year to the intensive study and evaluation of (his) mind, body and spirit. Through daily meditation, adoption of the keto diet, regular fasting (for upwards of 5 days!), sound healing, and yoga, he transformed into the healthiest version of himself and did everything he could to give his body the best chance of beating the cancer.
Recently though, Brion started experiencing familiar symptoms of when the cancer first showed up and surgery was again recommended as his best option for survival. So on August 17th, 2023 Brion underwent brain surgery again and while successful, he unfortunately experienced an “ischemic event” during surgery which left him without feeling or mobility on the left side of his body.
Brion is now facing a tremendous uphill battle of not only fighting cancer but overcoming the effects of his stroke as well.
On September 1, 2023 he was admitted into in-patient acute rehab where he is receiving daily OT, PT & Speech Therapy, 3 hours a day, 5 days a week. Today, marks his 12th day in rehab and a couple days ago we were notified that our insurance will only approve 16 days of rehab total.
This is not nearly enough time for Brion to recover—not even in the slightest. We now have just 5 days to figure out how we will afford and provide the same level of care he needs to fully recover from his stroke and continue to fight the cancer.
A Brief Insurance Rant:
In the past, insurance used to cover upwards of 3 months of rehab but they adjusted this by taking average lengths of stays for all patients (not considering outlier situations) and cut their coverage to a matter of weeks, on average, for all patients.
To add to this, while insurance may eventually cover the cost of equipment, patients don’t receive the equipment they need immediately upon discharge. It can take weeks to months to get the equipment needed which leaves families scrambling to find and afford the proper equipment to not only care for their loved one but to be able to care for them safely and at home.
This mentality puts so much strain on the patient and family and leaves only 2 options- home or nursing home. Brion going into a nursing home is absolutely not an option. And no family should have to face these as the only options.
Having never gone through anything like this in my life, I am astounded at how much is put on families to ensure the best care for their loved ones in situations such as these. It’s incredibly disheartening. More needs to be done to support patients and their families.
How you can help:
- Donate $ for Brion’s care- While Brion does have insurance, medicaid and receives disability, it is unfortunately not nearly enough. Your donations will go directly to Brion & help cover his costs for treatments, therapies, rehab, in-home care + the medical costs & equipment associated with his fight against brain cancer and recovery from the stroke.
- Share Your Ideas & Research- We are a small fish in a very big pond of ideas, experiences and research that exists and navigating this is incredibly time-consuming & complex. If you know of a program, treatment, technology etc. that looks promising for Brion’s condition we’d love to speak to you. Please message me here.
- Push Administration To Act Faster- Vice President Biden launched the Cancer Moonshot in 2016 and the current Biden administration has renewed this effort—focusing on reducing cancer death and improving the experience of people affected by cancer, but so much more needs to be done—and now. To provide Brion with the ‘round the clock support and advocacy he requires takes a very large & strong village.
- We have a team of about 6 family members and friends devoting time everyday to Brion’s care plus a handful of folks who’ve helped us in small ways throughout this entire process. Additionally, as his advocate, it's made it impossible for me to continue working and I’ve had to temporarily move back to FL from my home in San Francisco.
- Even with all of this, it’s still not enough. This experience has been tremendously difficult for Brion and my family. And to know that untold numbers of people potentially face these types of challenges alone is unimaginable. More needs to be done to raise awareness of how inadequate most medical insurance coverage actually is when it comes to long term rehabilitation & care.
- State & Share Brion’s Affirmation- We as a family strongly believe in the power of words and positive affirmations so we are asking everyone to please state the following words for Brion and ask your friends & community to as well:
- “Brion is walking & has fully recovered from his stroke, Brion is healed from cancer and Brion is living a healthy & full life.”
As for the future, Brion dreams of one day opening a holistic health center where he aims to share everything he’s learned throughout this experience and provide a place of peace, support, care and natural healing for all those facing diseases or similar situations.
Your contributions will not only help to ensure he can reach this goal, but will aid in helping others heal in the future. Thank you for your support in making his dream come true.
I will post updates here on how your contributions have helped Brion. Please also follow Brion's journey on Instagram @helpbrionfightbraincancer.
Thank you all for your love and support.
Brion’s sister,
Courtney
