Hi, I am Susan Debronsky, a customer of the Johnk Family Farm in Greenville, NY. Becky, Alex and their young daughter live in an idyllic setting in Greene County, NY, where they raise cows, hogs and goats and sell their products at their self-serve / honor system farm stand, where they sell their beef and pork products, as well as local eggs, milk, maple syrup, etc.
Recently, Becky received a diagnosis that is about to shake their world. In her words:
Chordoma is diagnosed in just 1 in 1,000,000 people per year. That means that about 300 patients are diagnosed with chordoma each year in the United States. At any given time, fewer than 1 in 100,000 people are living with chordoma. https://www.chordomafoundation.org/
Becky started looking into high-risk doctors in hopes of having another child. She had suffered from extreme tailbone pain since having their daughter Lorraine, just trying to rock her newborn. In 2018 an MRI showed a growth on her tailbone, but that doctor prescribed she lose weight. She then went through countless misdiagnoses and daily physical challenges, even being forced to use a cane for everyday farm work in her early thirties. In late 2021, Alex and Becky decided they needed to find a new doctor to evaluate this issue before moving forward with expanding their family. After a biopsy at Albany Med, they were faced with the diagnosis of Conventional Coccygeal Chordoma.
Treatment for Becky will be a lengthy process, and there are still so many unknowns. Becky currently spends all her time running their family farm and with their daughter. Alex works full-time off the farm and luckily does have health insurance. The plan will be for her to travel to Mass General Cancer Center in Boston, Massachusetts. To start, the Care Team will need to make sure the Chordoma has not spread to her spine or to vital organs. Then will start treatment for four weeks of proton radiation. Becky plans to travel with her mother for treatment and come home on weekends to see her daughter and catch up on farm management. After a month of proton radiation, the care team plans to send her home for about a month to rest up for major surgery. The surgery is extremely difficult due to the location on the spine and the nerves involved. There is the possibility of her losing bladder control and sexual function. Her Care Team expects her to be in the hospital for two weeks and the doctors are hoping it will only be a day-long surgery. After she recovers from the surgery, she will then have to return for 6 weeks of proton radiation. This is the tentative plan of treatment.
Becky’s biggest concern is keeping their farm running and caring for her child. She works every day caring for 40 head of cattle, 50 head of hogs, and 30 pygmy goats. She keeps the farmstand open, cleaned and stocked daily as with managing monthly wholesale. Hay season is just around the corner. They have no hired help on the farm, and Alex and Becky work together to keep everything running. Inflation is hitting everyone hard. The financial concerns are with bills, such as fuel, utilities, childcare, and unforeseen expenses such as lodging and necessary recovery treatments.
Please consider helping if you can!