A Human Life Story
By Nancy Arsenault
For Stow’s Jody Newman, her most difficult personal experiences are just milestones along life’s path. For the creators of the Boston Museum of Science Hall of Human Life, unveiled last weekend, Newman’s experiences are significant enough to be featured permanently in the interactive exhibit.
The Hall of Human Life explores the human body and its systems in ways that traditional museum exhibits have never done before. Working their way through the hall, visitors learn exactly how their bodies do both simple and complex actions such as sleep, breathe and recognize faces. There are interactive stations and personal data collections that anonymously gather and feed one’s own personal responses back to the exhibit’s pool of information.
A reflective aspect of the exhibit shows the effects of modern medicine and man’s attempt to combat disease. First person accounts, including three cancer survivors, serve to broaden perspectives about what the human race faces to survive. The efforts of Boston’s premiere medical community are showcased in the battle to combat diseases now and in the future. And that is where Jody Newman’s story comes in.
After a request from the Museum, where her daughter used to work, Jody agreed to tell her story on film, “Because I was so ready to get out of the house,” she said. She had just concluded 3 months of total isolation within her home, after undergoing stem cell replacement therapy, as part of a limited test group study to address aggressive lymphatic cancer. “I hadn’t been to church in 3 months. I had hardly seen a soul and where do I go? To a Museum that is filled with zillions of kids with runny noses,” she joked.
A little more than one year after her husband Ed passed away in 2009 from cancer, Jody herself was diagnosed with lymphatic cancer. After aggressive chemo and other treatments attacked that cancer, she was deemed to be in remission. That was welcome news, but it did not get Jody’s mind off a nagging pain in her leg, far away from the cancer site that had been treated. An exam of the leg discovered a new and more aggressive form of non-Hodgkin’s lymphoma cancer there.
She agreed to try a newly developed human derivative antibody, instead of the standard mouse derivative, explained Newman, who has educated herself extensively on the treatments, advancements and the plusses and minuses of all decisions that she faces. By the end of 2011, after heavy duty antibody treatment and aggressive chemo attacks, Jody was in the clear and doctors believed all had been a success. Six months later, the cancer was back and this time in her upper leg.
By July 2012, Jody was approved for stem cell replacement – allowing doctors to infuse her body with healthy, reproducing cells, on a mission to attack the cells that were destroying her body and its systems. But to do that, Newman had to first increase production of her own white blood cells, an intense process supervised and conducted by a team at Mass General and other Boston area medical institutions. By the end of 2012, her body was adapted to accept a port for infusions, as her treatments were so regular and intense that her veins could no longer handle the chore.
This past January, a stem cell donor match was found – in England. A young man, believed to be in his 30s, according to Newman. “I had no living siblings,” said Newman, whose sister had died of breast cancer, so she had to look for a match among others in the world. The cells were harvested from the patient in England and 48 hours later were helping to rid Jody’s body of the disease. “Timing was very crucial,” said Newman, who then faced the isolation period as her body worked to build up an immune system to replace what had been completely removed for the process.
Everything was going smoothly after the procedure, until there were indications that her liver was possibly rejecting the new cells. Focused treatment designed by her Boston team, helped stave off that rejection, and now finally, Newman appears to be in the clear and on the road to full recovery.
Newman refers to the discovery of new drugs in 2000 that now, just a few years later, have moved her from what could have been a sure death sentence to a life with a future ahead. Of the 42 people in her stem cell replacement study, “Only 1 has died and that was from an infection. For 29 people, the stem cells have taken, and for another 5, a second treatment was done successfully,” she said.
Newman hopes her story, now featured on video in the Hall of Human Life exhibit, will give hope to others. While many people will not wish to delve into the medical nuances as deeply as she did, she does urge all patients, suffering any kind of illness, “To trust in their doctors. Trust in all that is here compared to other areas of the country regarding medical care. While all of this can be very scary, we have to realize that we are in the very best place on earth to be taken care of,” she said confidently.
As for the exhibit itself, according to the Museum of Science, visitors enter portals into the Hall of Human Life through a giant pulsing “membrane.” After getting a wristband encoded with an anonymous I.D. number, visitors answer questions and take “15 unique personal measurements that will become central to the exhibition’s stories and part of a larger Museum database of visitor experiences online.”
Measurements include things such as how you walk, what you choose to eat, what keeps you awake, what stresses your feet. With simple interactive tests to help determine your answers, the data is included in the exhibit and also available for comparison online.
“We aim to address misconceptions and inspire you, as you discover new things about yourself and have fun comparing your data with friends and family,” said Hall of Human Life manager Elizabeth Kong. “You will feel the excitement of science, exploring how your body works by asking ‘How do you know?’ questions, and adding your experiences to our unique experiment. We also want to help you navigate the tidal wave of information on health and biology and encourage you to ask more questions. If you wonder about ‘super bugs’, for example, you can find out how antibiotics work and how to understand antibiotic resistance. You will also learn that we need some microbes to survive.”
Having been a part of the project and recently attending its opening, Newman is very excited about the learning opportunities there and encourages residents to go experience it for themselves. For more information, visit http://www.mos.org