News Article written by Medical Journal Onco’zine – The International Oncology Network: Earlier this year, thirteen years after losing her mother to glioblastoma, Manon Rinsma-Leonard, MSc*, found the inner strength to share her personal, heartbreaking, experience with the world. “13 Diamonds – Life Before Death from a Child’s Perspective“, the book she wrote, is an exuberant, deeply personal, emotional, uncensored and painfully honest, memoir about family, loss, hope, sadness, joy, resilience and the beauty of life.
Rinsma writes how a brain tumor, the size of a tennis ball, disrupts the happy lives of a loving family – her family. She shares her own experience, an experience from the perspective of a young child confronted with the desire of her father and older brothers to protect her from ‘seeing’ the disease her mother was experiencing. In her story Rinsma talks about the consequences of what happens if family members, lovingly misguided, shield their young children from crucial information that can help them cope.
A deadly disease
Glioblastoma multiforme (GBM), also called glioblastoma, the disease that took the life of Rinsma’s mother, is the same disease that took the lives of Senator John McCain, former vice president Joe Biden’s son Beau, and Senator Edward “Ted” Kennedy.
The disease is a fast-growing form of brain cancer that develops from star-shaped glial cells (astrocytes and oligodendrocytes) that make up the “glue-like,” or supportive tissue of the brain. Glioblastoma is considered a grade 4 tumor, which means that they are usually very aggressive and infiltrative, highly malignant, because the cancer cells reproduce quickly and are supported by a large network of blood vessels. While glioblastoma spread into other parts of the brain quickly, they don’t metastasize outside of the brain or central nervous system.
With an estimated 12,000 to 13,000 new cases occurring each year in the United States, the disease is the most common malignant primary brain tumor diagnosed in adults. While the disease is more common among older adults, in most cases in males, persons older than 50, and white or Asian people, the disease can occur in younger patients.
Patients diagnosed with glioblastoma usually experience increased pressure in the brain leading to a variety of symptoms can including headache, nausea, vomiting, and drowsiness. And depending on the location of the tumor, patients may develop a variety of other symptoms such as weakness on one side of the body, memory and/or speech difficulties, and visual changes.
In her book, Rinsma describes how she saw her mother experience the rapid onset and progression of her brain tumor, the cognitive and behavioral changes, and, for her, the uncertainty surrounding her mother’s prognosis, which, as a young child she did not yet fully understand.
Resilience
According to 2013 data from the Centers for Disease Control and Prevention (CDC), 2,596,993 people died in the U.S. in 2013. The vast majority of those deaths, 92.5%, were of natural causes. Each of them are, on average, leaving behind five loved ones – family members and close friends.
Maybe surprising, research by Holly Prigerson, Ph.D., director of the Center for Psycho-Oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston, and her team suggests that persons grieving for—a well-loved parent, spouse, friend or child—human beings are generally surprisingly resilient. On average, while they may encounter a very rough time for the first 6 to 8 months, where they frequently cry, have difficulty eating, can’t concentrate, often feel lonely, and long for their diseased loved one, nearly 85% feel somewhat better after six months.
And this percentage grows when deliberate steps are taken to help in the recovery process.
But while these steps are generally designed to help adults, help for small children is generally limited to shielding them from truth and ignoring the emotional needs they have, “because”, as Rinsma said, “children are just children.”
Rinsma pointedly describes this, and her feelings, in her March 2018 interview with The Onco’Zine Brief on PRX.
How to react
Children look to the remaining parents and older siblings for cues on how to react to the world around them and understand the events that shape their lives. There’s nothing wrong with expressions of intense feelings of grief after a loved one’s death. Genuine feelings of sadness, tears, and anger – normal – expressions of the grief of the remaining parent or older siblings, won’t damage them. But, according to the American Cancer Society, it is important to meet the child’s security needs.
Experts from the American Cancer Society also say that witnessing these feelings of grief give a child permission to express their own feelings. In contrast, if the remaining parent and other family members try too hard to hide their feelings, it may create emotional barriers, making it hard for the child cope and express their own feelings.
One of the devastating consequences of the lack of the remaining parent’s (or other adult family members) sharing of feelings of grief, is a profound loneliness. A loneliness Rinsma also experienced. But Rinsma, in growing up, did not want to become a victim. In her quest to survive, Rinsma, became, as she describes it, “an ambassador of [her] life’s circumstances rather than [becoming] a victim of circumstances.”
Empowering
“If you do feel lonely – lets be alone together,” Rinsma said, talking about about losing her mother to brain cancer when she was only twelve years old. This mantra has helped her to initiate honest conversations about heartbreaking moments in life.
“Think about this. If you can empower yourself – if you can find the strength – by finding your voice, imagine what you can do [to help] others,” she added.
This simple approach helped Rinsma publish her childhood recollections in ‘13 Diamonds – Life Before Death from a Child’s Perspective’
Reward
This summer, her desire to help other people by sharing her story as well as her own struggle and the courage she had to show to break through the emotional barriers, the mental walls that kept her from openly communicating and express her inner feelings and prevented her living her life to the fullest, was rewarded when the National Association of Book Entrepreneurs (NABE) recognized her book by awarding her with the Pinnacle Book Achievement Award in the category ‘Summer 2018 Memoir.’
Stronger by Sharing
Rinsma’s desire to help others also resulted in the creation of “Stronger by Sharing” a 501 (C) 3 organization. She established the organization to help others gain strength from the experience of others. The mission of the organization is to provide hope in difficult times by initiating openness, sharing stories and creating an inspirational environment.
One of the initiatives Rinsma started was the 2018 the Share Your Story in Short Awards, a writing contest in which everyone is invited to share a nonfiction short story.
“Whether you want to make people laugh, cry, feel, or teach something about life or you have an amazing story that can impact people all over the world, I invite everyone to submit their own story,” explained Rinsma, who was born in Rotterdam, The Netherlands, and graduated in Amsterdam with a Masters in Media Psychology.
“I hope we can turn this imitative into a platform without fear or judgment, where everyone can come together and share what is in their heart,” she added.
“There is so much power in sharing your stories. With billions of people are many more stories out there…,” Rinsma concluded.
Stronger by Sharing: three 2018 startup goals:
- Make a Difference in the world one story at a time, by creating an inspirational environment to help people realize they are not alone during difficult times;
- Help People share their Life experiences by initiating open communication and teaching them to overcome the emotional barriers and other challenges of writing their story and publishing their book;
- Raising Funds to give back when people need encouragement and to create the organization’s ‘Share Your Story in Short’ Awards.
Share Your Story
“Stronger by Sharing” invites you to share your story of hope and experience. For more information visit the organization’s website.
Resources
There are many resources for people available for children and young adults with a parent with cancer.
- Young Adults Caring for a Parent With Cancer [Article]
- 4 Keys to Raising Children While Caring for a Parent With Cancer [Article]
- When a parent has cancer: Helping teens and kids cope [Article]
- Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis [Article]
- Helping Children Who Have Lost a Loved One [Article]
- Mom or Dad Has Cancer…Now What? [Article]
Last Editorial Review: September 1, 2018
* Manon Rinsma-Leonard, MSc, is a contributing editor to Onco’Zine.
** Published in February 2018 Rinsma’s book, “13 Diamonds – Life Before Death from a Child’s Perspective,” is available via Amazon and Barnesandnoble.com
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