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Photo: Lucy’s Love Bus.
Transformation of an old VW bus into one bringing joy to seriously ill children.

July 1 was a sad day for friends of my former boss because despite some promising treatments, it turned out there really was no cure for the type of brain-stem cancer that his beautiful 8-year-old daughter mysteriously contracted.

But I want to tell you about two wonderful organizations that provided many happy moments for this little girl for more than a year. With the help of these nonprofits and the child’s friends and teachers, she was able to have normal, happy times as she became in 19 months — to use her mother’s words — “somehow, both more vulnerable and more amazing at the same time.”

Lucy’s Love Bus is described here. “Lucy Grogan founded Lucy’s Love Bus in 2006, from her hospital bed at Tufts Floating Hospital for Children in Boston. … Thanks to the financial support of folks in her hometown of Amesbury, MA, Lucy had consistent access to integrative therapies such as acupuncture, massage, horseback riding, art, and music therapy.

“Lucy learned that the integrative therapies that were so profoundly helpful to her during treatment were not covered by insurance, and therefore most children with cancer did not have access to them. She decided that when she was ‘done with cancer,’ she would make sure that all children had the same access to the helpful integrative therapies that she took advantage of during treatment.

“Lucy named her organization Lucy’s Love Bus, because she wanted to deliver love, comfort and quality of life to children with cancer. She felt that cure was very important, but recognized that no one was addressing the immediate suffering that she and her friends faced every day. Lucy’s primary concern was to deliver comfort … until a cure.” More.

The Hole in the Wall Gang is described here. “The Hole in the Wall Gang Camp is dedicated to providing ‘a different kind of healing’ to seriously ill children and their families, free of charge. We are a community that celebrates the spirit of childhood, the sound of laughter and the feeling of endless possibility.

“The Hole in the Wall Gang Camp was founded in 1988 by Paul Newman to give every child – no matter their illness – the chance to raise a little hell.’ Including our summer Camp in Ashford, Conn, we run 9 programs that serve more than 20,000 kids and family members throughout the Northeast each year.” More.

My former boss’s two wonderful daughters. So much love here.

June2017-sisters-to-the-end

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The Globe‘s Callum Borchers wrote recently about an organization called Seeding Labs, which presented at the IDEAS conference in Boston.

Founder Nina Dudnick, he says, “collects and ships used lab equipment to developing countries.

“Last year, Seeding Labs hosted six scientists and researchers from Kenya, one of whom was a chemist, Mildred Nawiri, who is studying how certain vegetables that are indigenous to West Africa might help prevent cancer.

“On Wednesday, Dudnick pointed to Nawiri’s research as an example of work that is unlikely to be done in the United States, because the vegetables she is studying do not grow here.

“And whatever benefits she might discover could go unrealized without modern equipment. Before Seeding Labs, Nawiri was using techniques Western scientists employed in the 1800s, Dudnick said.”

Dudnick points out that “this talent really is everywhere. The problems that face us, like cancer, don’t respect boundaries drawn on a map, so why should our scientific community?”

More at the Globe.

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No one needs to be told that art is healing. I find it can cheer me up when I’m just having a bad day. I even tell coworkers who are stressed out, “Go over to Fort Point and look at some art.”

But for those who care more about data than folk wisdom, there is research.

Genevra Pittman writes at Pacific Standard, “Music, art, and dance therapy may relieve anxiety and similar symptoms among people with cancer, according to a new analysis of past studies.

“Researchers who analyzed results from trials conducted between 1989 and 2011 said the benefits tied to creative arts therapies were small, but similar to those of other complementary techniques such as yoga and acupuncture. …

“The analysis included 27 studies of close to 1,600 people who were randomly assigned to receive some form of creative arts therapy or not, during or after cancer treatment. Patients with breast cancer or blood cancers—such as leukemia and lymphoma—made up the majority of study participants. Music, art, and dance therapy programs varied in how often sessions were conducted and over what time span. …

“On the whole, people with cancer who were assigned to creative arts treatments reported less depression, anxiety, and pain and a better quality of life during the programs than those who were put on a wait list or continued receiving usual care.” More.

I didn’t get into art therapy when I had cancer, but I’m sure I would have liked it. I did have a booklet created by past patients that contained daily readings, and more often than not the choices hit the spot. The patients named the booklet “No Other Way but Through.”

Photo: Memorial Sloan-Kettering Cancer Center
Art therapy program

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In last week’s Boston Globe, Bella English had a sad-happy story about a nonprofit that reaches out to families impoverished by their children’s cancer, Family Reach Foundation.

English writes that Carla Tardif once promised a friend who died of cancer that she would help families who were struggling with a child’s treatment. In searching for the best way to do that, she ended up at Family Reach, which helps families get back on their feet. The stories she hears are heartbreaking.

“ ‘On top of watching your child suffer, people get threatening eviction notices, calls from collection agencies, or they can’t make a car payment so they lose the car and can’t get their child to treatment,’ says Tardif.

“Medical hardship is one of the leading causes of personal bankruptcy in the nation,” writes the Globe‘s English. “According to a Harvard University study, more than 62 percent of bankruptcies are caused by overwhelming medical expenses — and cancer is the most costly. ‘It’s because a parent needs to stop working to take care of the child,’ says Tardif. ‘The average cancer treatment without complications is two years.’ …

“ ‘What I’ve learned is that it’s about so much more than money,’ Tardif says [of her work]. ‘That someone cares and gets it, has a really profound effect on families.’

“Just ask Raquel Rohlfing, who at fund-raisers tells her story. Homeless, with a son [Mikalo] who had undergone a bone marrow transplant, she got a call from Tardif, who arranged payment for a year’s rent on a Winchester apartment, not far from her own house.”

In Rohlfing’s case, Tardif really went the extra mile.

English writes, “Tardif’s husband, a builder, put in a new kitchen and floors, and fixed the bathroom in the apartment. But Tardif wasn’t finished. She is also executive director of Music Drives Us, the nonprofit founded by car magnate Ernie Boch Jr. Rohlfing needed a job, and Tardif needed help, so she hired her at Boch’s foundation.”

Read more.

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Some years ago, the John Adams family biographer Paul Nagel introduced me to physician/poet Norbert Hirschhorn. Paul told me that Bert was on the team that helped save thousands of lives in Third World countries simply by distributing water to which sugar and electrolytes had been added. (A National Institutes of Health paper references Bert’s 1973 research on “oral glucose electrolyte solution for all children with acute gastroenteritis” here.)

A special NY Times science supplement on Sept. 27, 2011, “Small Fixes,” reminded me of Bert and the notion that small innovations can have a huge impact.

Among the great stories in the supplement. is this one about Thailand’s success fighting cervical cancer with vinegar.

It turns out that precancerous spots on the cervix turn white when brushed with vinegar. “They can then be immediately frozen off with a metal probe cooled by a tank of carbon dioxide, available from any Coca-Cola bottling plant.” The complete procedure, which can be handled by a nurse in one visit, has been used widely in Thailand, where there are a lot of nurses in rural areas.

In Brighton, Massachusetts, Harvard’s George Whitesides founded Diagnositcs for All to commercialize his inventions, including a tiny piece of paper that substitutes for a traditional blood test for liver damage. Costing less than a penny, “it requires a single drop of blood, takes 15 minutes and can be read by an untrained eye: If a round spot the size of a sesame seed on the paper changes to pink from purple, the patient is probably in danger.” Read the Times article.

Amy Smith at MIT is another one who thinks big by thinking small. Read about her Charcoal Project, which saves trees in poor countries by using vegetable waste to make briquettes for fuel.

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Of course, it wasn’t really called Cancer Dance Class. It was called “I Hope You’ll Dance,” and any woman who had ever had cancer was welcome to come to Emerson Hospital and join in. It wasn’t really dance either. I would call it dancelike movement to recordings. With props. Teacher Susan Osofsky-Ross was a cancer survivor herself and had a great collection of music from her many years in the dance world. Some pieces, like “You Raise Me Up,” had a spiritual vibe.  But in the same session we were just as likely to perform numbers like “Diamonds Are a Girl’s Best Friend” (with feather boas) or “Everything Old Is New Again” (with bowler hats). There was a lot of chat and laughter even though not all of us were in remission.

One of the women brought her mother in a wheelchair. The mother had a heart condition. She danced with her arms and often cracked us up with her quiet humor. One day we came to class and learned that she had had an attack and was now upstairs in the hospital. She was in a coma. Her daughter had been with her all night and decided to join us for class while her brother kept the vigil. At the end of the class, we asked the daughter whether she thought it would be a good idea if we took the boom box up to her mother’s room and did one of the dances for her. Bonny said, “Yes. Let’s try it.”

So up we traipsed, through the hospital corridors to the sick room, and quietly sang and “danced” one of our more uplifting numbers around the bed in the cramped room.

We still like to think Bonny’s mother heard us and was pleased.

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I think I have always cut articles out of the paper to give people or to post on my fridge. (At the office, I post work-related clippings on the wall of my cubicle.) Suzanne and her brother, John, often teased me about how often the stories were dire warnings in the news. Around this time every year, they would be deluged with clippings about sun screen and melanoma or deer ticks and Lyme disease.

Now that they have grown up and have their own homes, the fridge is rather empty of news articles. But since they are reading this blog, I’ll post a typical dire warning from today’s Boston Globe, something I’ve been harping on since the mid-1990s. (Oh, well. They laughed at Columbus.)

Hiawatha Bray’s column for June 2 is about protecting oneself from possible cancer-causing effects of mobile phones. He has several pieces of advice any mother would love: “make like a teenager, and text instead of talking. Sending SMS or e-mail messages keeps the phone well away from your skull. The farther your brain is from the phone, the lower the risk of brain tumors. If you must talk, most handsets have a speakerphone feature to let you converse at a distance. I often use it because I’m too lazy to hold the phone. Now I’ve got a better reason.”

And a study done in Sweden a few years ago suggests that it isn’t just brains we need to worry about. Cellphones left on in a pocket can affect reproductive function.

Bray says, “I carry the phone on my hip, in a holster which keeps it the required distance from my body. I’ve mocked my wife for losing her Android smartphone in her purse, but carrying it well away from the body is the safest way to go.”

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