“You, yourself, as much as anybody in the entire universe,
deserve your love and affection.”
Twenty years ago, when my eight-year-old daughter was six months into what would become an arduous four-year journey through cancer treatment, a dear friend booked one night at a hotel for me, just two miles from my home. My daughter had been living in the hospital for six months, and I was spending six days a week in the hospital with her, then driving home for one night to visit my younger daughter before going back to the hospital for another six days and nights.
During my 24 hours at home I would frantically race to get the laundry done, go grocery shopping, pay the bills, make meals to take back to my diminishing child, desperately try to squeeze in quality time with my four-year-old daughter who felt understandably enraged and completely abandoned by me, try to connect with my boyfriend, worry constantly about my daughter who was safe with dad in the hospital but extremely anxious while separated from me, try to sleep, pick up essentials for another week at the hospital, pack up again, stop for gas, and speed back to Boston where each week promised new complications, new infections, new protocols, new nightmares. Whether a child with cancer is inpatient– or outpatient and having to go to clinic several times a week– the mayhem, chaos, and exhausting schedule tend to be similar for each family during cancer treatment.
So, when my thoughtful friend booked an overnight for me at our local hotel, just a couple miles from my home, I was so grateful. The hotel was nothing fancy. I didn’t go to the pool, order room service, or have a drink with dinner. I crawled into bed in the generic, uncluttered, beige room at 6:30 PM, and slept for 12 hours, as if I didn’t have a care in the world. For one blissful night, I pretended that life was this simple, this easy, this… beige. It was the best vacation I ever had.
Twenty years after my daughter was diagnosed, many of my memories from those devastatingly beautiful days are a blur. But I can still picture that hotel room clearly in my mind’s eye; I desperately needed sleep and a break from the terror of my daily reality, and that bland hotel room granted it to me. For just one night, my life felt beige instead of a kaleidoscopic swirling crimson, and that little break allowed me to return to my place in the trenches beside my beloved daughter with renewed vim and vigor.
Through Lucy’s Love Bus, I have met and worked with hundreds of parents who have navigated or are currently navigating their children through the terrifying and treacherous waters of cancer treatment. When you are in it, it feels like you are riding a rollercoaster that will never, ever end. Imagine that, for a moment: faux terror is part of what makes rollercoasters fun– it’s scary, but we know we will all be okay. Chances are very, very good that the ride will end, and we will still be alive. But for the families we work with at Lucy’s Love Bus, who never chose to be strapped into this this horrifying roller coaster ride in the first place, the terror could not be more real.
Thanks to generous funding from The Ilene Beal Foundation, The Margaret Stewart Lindsay Foundation, and The Parmenter Foundation, parents and caregivers of children with cancer in New England will soon be allowed to push the pause button on their particular roller coaster ride, and take some much-needed breaks.
Our new Ilene’s Caregivers program is being piloted in New England to families coping with a childhood cancer diagnosis who are: 1) single parent households; 2) managing their child’s relapse, secondary cancer, poor prognosis, or transition to hospice; or 3) supporting their child through long-term late effects of cancer treatment.
Ilene’s Caregivers offers eligible families a $1,000 grant for parents to spend on a menu of ten different respite options provided by Lucy’s Love Bus and our partners. Options include retreat weekends, individual/couples/family counseling, support from an independent healthcare advocate, access to support groups for parents, 1:1 support calls with our trained staff, and access to integrative therapies including yoga, massage therapy, and Tong Ren.
We are currently searching for charitable foundations and corporate giving programs throughout New England so that we can eventually extend this new program to all of our Lucy’s Love Bus parents and caregivers.
If you know of anyone who would want to know about this program, either as a program recipient or a potential donor, please contact us right away. Thank you for sharing your light and love with the extraordinary people we serve. We are blessed to be a part of this powerful circle of caring.