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Friday, November 2, 2012
Three- year-old Hope Bolster and her sister, Quinn, were always eager for the toy closet to open. The little girls would wait for Friday, which is toy day. Toy day was their reward for making it through another week of Hope’s proton beam therapy. The therapy delivered powerful doses of radiation to Hope.
From the magical closet in the Massachusetts General Hospital Cancer Center they had been given My Little Pony figures and The Littlest Toy Shop sets.
Jay’s blog is titled “AYellowWood” after a line in the Robert Frost poem “The Road Not Taken.” Similarly, Susan’s blog is titled “Milestogobefore” taken from another Frost poem.
I think growing up in New England, you often read his work in English classes. But just before Susan was diagnosed, I read a new take on “The Road Not Taken.” Usually it is read as choosing the lesser used path is a good thing, but that reading of it ignores the line;"I shall be telling this with a sighSomewhere ages and ages hence;"This line seems to indicate that perhaps the journey was harder than expected. It struck a chord with me when I needed a name for my blog. Then, Susan keyed off that theme and used a line from “Stopping By Woods on a Snowy Evening.““But I have promises to keep,And miles to go before I sleep,”I think she felt that she was too young for such a diagnosis and as a mom and wife she has too much to do before cancer gets her.
In November of 2011, Hope was diagnosed with rhabdomyosarcoma, a form of muscle cancer. She was two and half years old. Following the diagnosis, the little girl endured surgeries to remove an abdominal tumor and a bowel obstruction, as well as proton beam therapy. During proton beam therapy, Hope had to be anesthetized daily so she would lie still while they radiated the tumor site.
But on Fridays, Hope and 6-year-old Quinn could be carefree for a little while. For children living with cancer and their siblings, toys have power — they provide an escape from needles and medications.
The Toy Box program is a service of the Mass General Cancer Center. The Friends, a volunteer philanthropic group, raises funds for educational and supportive care services, like the Toy Box. Each week, the Toy Box distributes more than 35 toys to pediatric cancer patients and their siblings. The toys are the children’s to keep and enjoy. They provide positive memories during a rough time.
“The Friends partner with caregivers like Rachel Bolton, a generous, enthusiastic pediatric nurse in Radiation Oncology, who created and administers this program,” explains Barbara Hawkins, treasurer and grants committee chair of the Friends. “Rachel uses the Friends' funds to bring a dose of joy and comfort into the routine of pediatric patients and their siblings,” Hawkins said. She explained that Rachel often goes on shopping trips to look for toys and even does some sewing.
Hope, like many children receiving life-saving treatment for cancer, had to endure uncomfortable moments. In his blog, her father, Jay, recounted an exchange with Hope just before she was going to be put under anesthesia for surgery to remove a tumor in her abdomen:
‘Is today the sleepy mask?’ asked Hope. ‘Yes,’ Jay replied.
‘OK’, she answered. And that was that. Jay knew that his daughter disliked anesthesia and was impressed by her acceptance of what was to come.
He wrote that he was amazed at his sweet, innocent girl. He wrote that children approach life differently than adults. “One advantage of being so little is her lack of future awareness. Scary for her is in the moment. I am trying to remember that as we get through today,” he wrote.
Jay is no stranger to cancer. In January of 2010, his wife, Susan, was diagnosed with Stage 4 colon cancer. Every two weeks, they packed up Hope and Quinn to trek from Portland, Maine, to Boston for Susan’s chemotherapy. “Sadly, my family has used the supportive care services of the MGH Cancer Center for over two years,” Jay says. “I am an old pro.”
The Bolster family has met their health challenges with remarkable strength and grace. Both Jay and Susan started a blog to keep family and friends informed. Early in her treatment on Feb. 28, 2010, Susan blogged about her decision to come to Mass General:
Last Friday after blood work and the medical appointment, but prior to getting my chemotherapy treatment we did a little walk around to see some of the sights. Those floors also house a resource library and a botanical healing garden. We exchanged books in the resource library and continued our short walk down to the healing garden. The outside garden is closed (it’s a roof top and only open in the warmer months) but the inside garden offered some fresh air, nice plants and a pretty seating place. As we were leaving, Jay pointed at guest book. The page it was open to dated 2/19 (that day) and the entry was by a wife celebrating her husband being 10 years free of Stage IV colon cancer. If everything else did not make me realize I was in the right place — that moment alone has replayed in my head all week. I am exactly where I need to be.
“MGH has been really good for us, the support is here. To have Sue and Hope treated in one place is nice, especially being from out of state,” says Jay. “The nurses are fantastic. The social workers are very helpful. I feel like they are there if you need them. They offer their support but at the same time give you the space that you need. These resources are critical when you’re dealing with cancer.”
Hope will finish chemotherapy in the fall. Susan continues to monitor and treat her cancer with David Ryan, MD.
To learn more about the Friends of the Mass General Cancer Center, please visit www.massgeneral.org/cancer/friends or email FriendsofMGHCC@partners.org
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