Sophie Steiner.
Sophie Steiner. Photo courtesy Be Loud Sophie Foundation

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The Be Loud Sophie! annual music fundraiser aimed at helping teens and young adults with cancer is this weekend.

By Thomas Goldsmith

Friday and Saturday at the Cat’s Cradle in Carrboro, loud bands will rock the house in memory of Sophie Steiner, a Chapel Hill teenager who’s left a deep mark on her community, before and since her death from cancer at age 15 in 2013.

The Be Loud! Sophie Foundation — supported in part by the concerts — works year-round to help answer tough questions faced by adolescents who have cancer. “Be Loud,” a phrase from one of Steiner’s poems, sums up her goal of making the needs of young people with cancer more widely known.

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The Be Loud! Sophie concerts take place Aug. 26-27, Friday night, Saturday afternoon and Saturday night. Headline artists include the English Beat and Hobex.
Tickets for the entire weekend are $45. Evening shows are $25 each. A Saturday matinee ticket is $10, with children 12 and under admitted free.
For more information, visit beloudsophie.org/be-loud-16/

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“She was very vocal about wanting more for the teenagers,” said Lauren Lux, a licensed clinical social worker, and the adolescent and young adult liaison at UNC-Chapel Hill’s Lineberger Cancer Center.

“There are a lot of amazing resources; Sophie appreciated those and thought we could be doing more,” Lux said. “The overarching theme was that we wanted to help teenaged and pediatric patients be who they are. They need to achieve developmental milestones and maintain their personhood and dignity throughout their stay.”

[pullquote_left]The Be Loud! Sophie foundation has two primary goals: To help adolescents and young adults deal with being cancer patients and to support research into “the medical and psychosocial outcomes” of this population.
beloudsophie.org[/pullquote_left]

As an example, Lux cited a question these cancer patients face at a far earlier age than most of their peers: Will they want to have children?

“We have to talk to them about fertility preservation,” said Lux, a UNC employee whose position was created and whose salary is paid by the foundation.

For a patient about to undergo chemotherapy and/or radiation, medical technology offers the chance to preserve eggs or sperm for potential use later in life.

Young people with cancer should have the right to “fertility preservation,” or the ability to have children even if their reproductive functions are compromised by their disease, Lux said.

However, there is a significant gender-based difference in the cost of the procedure. For men, the cost of saving sperm is about $500, with continuing costs for preservation of several hundred dollars per year.

For women, the initial cost of saving eggs is about $8,000, with continuing costs of $400 per year.

Unique questions

Teens and young adults with cancer have both developmental and material needs that the foundation works to ease as much as possible.

Sophie Steiner. Photo courtesy Be Loud Sophie Foundation

“They are really just trying to survive and to hold on as much dignity as they can,” Lux said. “They want to go to school, or work at the mechanic’s place where they work. Some of them have to work in order to pay their rent.

“Some of them have parents that are in good shape and can help out; others, not so much.”

Patients between the age of 13 and 18 are seen in the pediatric cancer center, those between the age of 18 and 26 are treated in the adult hospital. Lux deals with both groups, sometimes on topics that the younger patients might avoid with parents.

“We talk about sexual relationships and drug use and all of those normal relationship things that are happening,” she said.

Patients say they want to be regarded not primarily as cancer patients, but as regular people who happen to have cancer.

For example, in September, 12 UNC students who have cancer will be going to Pilot Mountain for a rock-climbing weekend in a collaboration between Be Loud! Sophie and the Colorado-based nonprofit First Descents.

Such events — and the Be Loud! Sophie organization — aim to meet goals these young people have made plain, a preference for things that are positive, non-boring and focused on parts of their lives other than having cancer.

“It is a lot about, ‘How do we meet the really specific needs that they have?’” Lux said.

Earlier this month, a group of five patients and two siblings went on retreat and came back with several lists of “reflections on having cancer,” reprinted here by permission:

Hardest parts about having cancer as a teen:
• Loss of privacy
• Steroids
• Unexpected things happening
• Weakness
• Loss of independence
• Anticipation of bad/hard things
• Overprotective parents
• Boring
• Side effects of treatment
• Change in physical appearance
• Isolation
• Missing out on things your friends are doing
What helps:
• Friends
• Positive goals
• Positive people in your life
• Siblings that treat you the same as they treated you before you were diagnosed
• Talk about things other than cancer
• Health care providers that have a sense of humor, are understanding, flexible, and care about you as a person
Top 5 things I would tell another teenage cancer patient:
1. Have a sense of humor.
2. It’s going to suck but you’ll get through it.
3. There is always a light at the end of the tunnel.
4. Get facts and information — be prepared!
5. Find the good in your diagnosis — it can change your perspective and outlook on life.

Source: beloudsophie.org/whats-new/

Thomas Goldsmith

Thomas Goldsmith worked in daily newspapers for 33 years before joining North Carolina Health News. Goldsmith is a native Tar Heel who attended the UNC-Chapel Hill, and worked at newspapers in Tennessee...