A community’s beautiful holding

A community’s beautiful holding

Going through the experience of a child with treatable cancer is an exercise in flexibility and patience, a painful and stress-filled act of faith for the whole family

MARLBORO — We plot out each day, week, year with the understanding that our well-laid plans could be unravelled in a matter of minutes.

Sometimes it is a simple change, like car trouble or a variation in the weather. Other times it is an accident, illness, or unexpected death that will seem to shift time from that point onward. It is difficult to live with the acceptance that these moments of transformation will happen to all of us and the people we love.

When my son Leander, who is about to turn 16, was a baby and I a new mom, we were part of a play group of other parents and babes facing life at a similar point. There was a regular core group of us: six or so moms and one dad with his daughter Alice.

Over the next handful of years, we spent many pond-side afternoons and birthdays with Alice and Leander playing together, with other mutual friends coming and going. My husband and I became good friends with Alice's parents, Matt and Pam. Leander and Alice went through Marlboro Elementary School together in a class of eight, and Pam became our daughter Althea's teacher at the school for three years.

We talked, watched, and supported as Alice navigated her family landscape, which changed from her being an only child in a single household to her living in two households with new partners to her parents and a new younger half-sister.

Alice celebrated what she had gained rather than what had been lost. She cheered her mom's coming out, she embraced the perspectives of her biracial stepmom, and she enjoyed the experience of having a sibling. She was also excited about her new adventure: heading off to the Putney School!

“Bring it on!” could be Alice's motto.

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When I saw Alice and her mom outside of a New England Youth Theatre production this past spring, I was struck by how Alice the teenager embodied herself with such expression and confidence: slightly mohawk-ed, light curly hair, bright colored gel nails and lipstick, funky socks, and a big smile.

This image of Alice remained emblazoned in my mind's eye as I read texts over the coming weeks of her rapidly changing reality.

A spinal tumor was discovered on Alice this spring after complaints of back pain and some tingling limbs. Within 24 hours of the discovery, Alice was in emergency surgery at Dartmouth-Hitchcock Medical Center and was discovered to have Ewing's sarcoma, a rare childhood cancer.


From that moment onward, her family's life changed dramatically. Her parents were informed that they should prepare for a very difficult year ahead.

Pam, her mom, immediately took medical leave from her teaching job through the following school year. Their incoming income and outgoing expenses changed dramatically.

As word spread across our tiny community of 900, months of meals were organized, errands done, house cleaning offered, wood stacked, cards made for Alice. Even some garden work helped keep the pleasures of the season going. In all, a beautiful holding of Alice and her family through the initial shock of cancer in a child.

As Pam jokes sometimes, “There is great swag that comes with childhood cancer.” Sometimes laughter and gratitude is all you've got to keep you going under this kind of stress. Pam says she has learned really quickly how to say “yes” and “thank you” to anything people offer her.

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Children's Hospital at Dartmouth-Hitchcock does provide amazing resources to help families with all the aspects of life that come along with having a child in long-term treatment for cancer.

Social workers are provided for both the child and parents to help with financial resources. Alice's treatments are covered by health insurance but the copays on this level of treatment are massive, especially if a parent is home as a caregiver and not working.

On any given week, Alice is going to get blood work, check in at the local emergency room, or travel to DHMC for chemotherapy and check-ups. Pam is her at-home nurse, monitoring how her body is reacting to the treatments, while filling out forms and needing self-care for her own emotional stress.

Alice has had to have a platelets and blood transfusion at points so far due to the depletion of the body's defenses from chemo. This month, Pam and Alice have left Vermont to live in a patient dorm in Boston while Alice receives proton radiation at Massachusetts General Hospital.

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Even in the best-case scenario of family, medical, and community resources, going through the experience of a child with treatable cancer is an exercise in flexibility and patience, a painful and stress-filled act of faith for the whole family.

Pam, Alice's stepmom Lana, her stepsister Astrid, and Alice spent a week this summer at Camp Sunshine in Maine for families of children with serious illnesses, a welcome reprieve from the treatments and daily concerns. Alice said that it meant a lot to meet other teenagers going through a similar experience, with a similar new norm - and to be able to swim despite the port in her chest.

And Pam and Lana received support from other families who understood intimately what they were going through.

But they also shared the reality that the community support is strong for the first few months and then fades, leaving you feeling more alone and stressed as the treatments continue.

Friends and family go back to their own lives after the initial shock of the diagnosis. It is hard to maintain the consistent vigilance for a family in need.

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Pam and Alice have started a blog where they take turns writing short updates about their experience. In Alice's most recent post she states,

“What I'm trying to say is that I don't think of myself as someone who needs pity because I have cancer; it just feels like another part of me. I am doing what I would be doing any other summer, just mixed with hospital stays. So thank you, everyone who has given me compassion and love and also has treated me still as me.”

Alice is still Alice, a 15-year-old teenager, wanting to hang out with friends, be respected, learn about the world, and go to school. She didn't sign up for Cancer 101 but is willing to take the elective with an open mind.

Why this article? Maybe it helps me to sink into the truth of my friend's situation, to not fade for Alice and her family, to bring a larger community into awareness of their need for support.

And as a more general reminder that we all have people around us, at any given time, going through extraordinary suffering that could use our understanding and involvement.

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