Arley Sage is an adorable two-and-a-half year old girl on a long and difficult road as she battles a rare childhood cancer. According to Arley’s single mother, Ashley Picard, “Arley loves to laugh and have as much fun as possible.” She also likes to sing and dance and that’s reflected in her favorite TV shows; the Mickey Mouse Club, The Voice, and So You Think You Can Dance. “She’s always been such a happy-go-lucky kid, a typical healthy toddler,” says Ashley. That’s why it came as such a shock when doctors at the Connecticut Children’s Medical Center (CCMC) in Hartford , CT, investigating a golf ball sized mass in Arley’s neck this past April, determined she had Stage 3 Rhabdomyosarcoma.
Over the last several months, Arley and Ashley have bravely navigated a gauntlet of additional tests, procedures, medications and surgery together. Following the surgery, where doctors where able to remove roughly 50% of the tumor from Arley’s neck, she started chemotherapy. While the majority of tests and treatment took place at CCMC, not far from their home in New Britain, CT, doctors recommended Arley also undergo proton therapy, a newer and more precise form of radiation therapy that could help minimize potential complications and improve her long term chances for recovery. Proton therapy is particularly desirable for pediatric patients like Arley because radiation oncologists can use it to more accurately target tumors while minimizing the damage to the critical healthy tissue that surrounds a tumor and reduce the chance for complications later in life. In Arley’s case her tumor is very close to key spinal nerve tissue as well as her brain.
As Ashley learned, there are only a handful of proton therapy facilities in the US and the nearest one was located at Massachusetts General Hospital in Boston, a good two hour drive from home. Since the proton therapy requires treatment sessions five days a week for a period of six weeks it meant that Ashely and Arley would essentially have to move to Boston for the treatment. Fortunately, mother and daughter didn’t have to face this tough challenge alone. CCMC Social Worker, Jessica Flores, was able to refer Ashley to Compass to Care; an organization working to ensure children with cancer can travel to receive the life saving care they need. Compass to Care provided funds to cover the cost of their accommodations in Boston, as well as for gas to get back and forth.
Arley and Ashley are currently staying in Christopher’s Haven, a special community dedicated to providing temporary housing for children with cancer and their families during their medical treatment. Christopher’s Haven has seven furnished apartment spaces located directly across the street from Massachusetts General Hospital making access to treatment very convenient. Even though the $30 nightly charge for their housing is very reasonable, Ashley points out that over six weeks the total room costs will add up to around $1500 (this includes charges for a hotel stay prior to getting into Christopher’s Haven). “When you are a single parent you don’t have that kind of money lying around. So figuring out a way to pay for this is a huge weight off my shoulders. It is a great relief that Compass to Care could step in and take care of this for us.”
After several weeks in Boston, Arley is starting to feel the physical and emotional effects of the ongoing chemo and radiation therapy. But Ashley is quick to point out that Arley has always been resilient and quick to recover. “She is very well behaved and doesn’t act out or anything. Even like this morning, she was nauseous and got sick. But five seconds later we pulled out the bubbles and she was laughing and giggling.”
While acknowledging that they face a rough road ahead, one that includes continuing treatment, physical therapy, and perhaps follow up surgery, Ashley stays positive about the whole process. “As much as I can, I try to make it almost like an adventure. When Arley feels up to it I try to take her out and do something together.” Sharing a couple of highlights, Ashley mentions, “Dream Night at the Franklin Park Zoo was a fantastic experience. And we had a special evening at Fenway Park watching the Boston Red Sox. It was one of the best things that has happened in quite a while.” Ashley says they met pitcher Clay Buckholz and his wife and got to attend his special children’s charity event, the Buckholz Bowl, the following evening.
Describing how important it is for Arley to be receiving the specialized treatment available in Boston, Ashley explains, “We are where we need to be in order to get the outcome we are hoping for. Mass General is one of the best hospitals in the country. We are in great hands here which is fantastic. The staff is wonderful. They are constantly asking if there is anything we need, anything they can do for us. It is a huge blessing.”
Ashley encourages other families facing similar medical challenges to stay strong. “You don’t ever give up, you don’t lose hope. As I like to say, ‘Arley has cancer. Cancer doesn’t have Arley.’ It’s not going to define who she is.” Ashley believes serious childhood cancers like the one Arley is battling need more attention and research. And she encourages families and parents to seek the help and support they need, including from organizations like Compass to Care.
You can follow Arley’s journey through treatment and recovery on the Team Arley blog that Ashley created at http://teamarley.blogspot.com/.
A special thank you to Paul Berger from Berger Communications for this great article about Arley. You can connect with him on LinkedIn.