“Twenty years after this photo of Lucy was taken, Parmenter granted Lucy’s Love Bus the ability to channel our founder’s love and support directly to the women and men who are perhaps most critical to the survival of our childhood cancer patients: their parents and caregivers, who will stop at nothing to save the lives of their children.”
I took this photo in the summer of 2002, when Lucy was 8 years old. I know it was taken within two weeks of Lucy’s cancer diagnosis, because she still had some hair. It all fell out on day 13, as we were told it would. The baby in the photo is Nathan. He was 6 months old when he was diagnosed, on the same day as Lucy. He had beautiful, deep blue eyes, and Lucy nicknamed him Blueberry Eyes. Our two families became very close, and Lucy spent every waking moment with Nathan, in the playroom or pushing him around the halls in a little red car for hours on end.
Lucy’s cancer protocol kept us in the hospital for months at a time, which meant that she met and befriended every single child who came and went. When each newly-diagnosed family arrived on the floor, while the parents were still walking around with stunned expressions, Lucy would scoop their child under her wing and tell them all the important things they needed to know. I would hear her instructing them, “You can use your medical pole like a skateboard like this… but don’t do it when chemo is hanging or you will get in serious trouble.” She knew all the rules, and she knew just how far one could bend them.
Lucy became a mascot for the floor and a beloved caregiver to all of the younger children. The nurses told us that when children were being admitted through the ER with a fever, their parents would call up to 7-West to see if Lucy was there; to know the comfort of a familiar face would be there waiting for them. And she always was.
The name Lucy is from the Latin “Lux,” meaning “Light,” and Lucy knew that the secret to survival was to shine her light and love on the younger children instead of focusing on her own pain and suffering. She learned how to distract herself and her young charges with love, laughter, and play. Lucy was a true caregiver to her core and was happiest when she was with “her” children. Tending to the babies made her happy and allowed her to thrive through an incredibly challenging, experimental treatment protocol.
Our newest program, funded in large part by The Parmenter Foundation, honors Lucy’s caregiving nature by focusing much-needed attention and support on caregivers of children with cancer. In the first six months of our pilot caregiver program, called Ilene’s Caregivers, I have witnessed firsthand the overwhelming impact of Parmenter’s generosity on the parents living in MetroWest communities who are eligible for this new program.
When I tell parents that they have $1,000 to spend on self-care and respite, they cannot believe that someone out there is aware of and cares about their exhaustion, fear, and stressful life of endless crises. Our families, especially our caregivers, live in fight or flight mode for years on end.
“Parmenter’s support is helping caregivers – these unsung heroes – find the strength to keep putting one foot in front of the other. For far too long, our caregivers have soldiered on silently, without complaint. They have no choice but to keep moving forward, sometimes in hope and faith, and sometimes in fear and despair.”
The path the caregivers walk is still grueling, but now they can stop for a moment to come up for air. They can take little breaks to restore their endurance. They can go away for a night or two and actually sleep or take an hour off for a massage. They can join a weekly support group, go to counseling, or hire an independent healthcare advocate. They have a number to call any time they need support. Thanks to Parmenter’s funding, they are no longer alone.