The Trove: Sienna Gonzalez

Sienna photographed by family friend, Charlotte-based Mary Ebert.

Sienna Gonzalez is in many ways your typical American tween: she likes Selena Gomez, she loves to hang with her friends, she shoos her little brother out of her room for privacy and like most born in the new millennium, she knows her way around a Wii console. Yet she’s also borne some atypical burdens on her eleven-year-old shoulders.

I first laid eyes on flower girl Sienna, then a toddler, when at the April 2002 wedding of dear friend Franchell Mack Brown, her parents and I were in the bridal party.  I remember thinking what a lovely family they were. Rafael and Oi Yin were a kind, good-natured couple full of light, love and gratitude for the blessings of each other, their daughter and angel-on-the-way, Derek, born later that year.

The loving Gonzalez family.

Just three years later, the otherwise fit, non-smoking Rafael was, at 36 diagnosed with and succumbed to metastatic lung cancer which had spread to his spine and brain. Though Derek was very young, Sienna has very clear remembrances of her father and was devastated by the loss.

Admirably navigating the waters of early widowhood, Oi Yin moved forward to instill a sense of stability and strength in her children, a sense upended by shocking news. She too was diagnosed with cancer in February 2010 and given a prognosis of seven months to live. She has courageously soldiered on, hopefully and aggressively fighting the malignancy while also preparing her children for the statistical odds. Pancreatic cancer is the fourth leading cause of cancer death in the U.S.

Back in March Oi Yin and Sienna learned that PCAN (Pancreatic Cancer Action Network) was planning an Advocacy Day in Washington, DC on June 15 to seek legislative support of the Pancreatic Cancer Research and Education Act. Understanding the power of petitioning, Sienna quietly conceived of an idea. “I asked my class to write letters to Congress to help pass the act, and they did but I didn’t tell my mom,” Sienna shared with me from her suburban Philadelphia home.

I also spoke with proud mama Oi Yin (sixteen months post-diagnosis, and tumor-stable I’m happy to add) as she shared her shy daughter’s journey to activism.

“She did it unbeknownst to me,” Oi Yin says. “And she thought if they did maybe I can convince the whole school, and if I can convince the whole school, maybe I can convince the whole school district to do it. And that’s how it became this letter campaign. At first she wanted to surprise me but then it got so big she needed my help and told me about it.”

“It was pretty amazing, I’m so proud of her,” Oi Yin says. “I think its her way of taking control of something. She’s had control over so little with her Dad’s cancer and now mine.  She’s this 11-year-old maturing faster than others because of all she’s been through. Is she angry? Is she sad? Is she scared? Major. She’s all of those things, but she’s trying to turn it into something positive and that’s the beauty of it. She’s not feeling sorry for herself, she wants to make a difference. I tell everyone it is a huge gift for me that I got to see this.  It’s just a glimpse of who she might become as an adult– a selfless, giving person. She already understands that the world is bigger than just her.”

The gravity of her circumstance has given her an empathy beyond her years. “I want to save my mom, but if I can’t save my mom maybe I’ll save somebody,” she said.

In May, Skyview Upper and Woodland Elementary Schools held a collaborative   “Purple Day” with students and faculty wearing purple, the ribbon color for pancreatic cancer awareness. Sienna spoke before her brother’s second grade class and assembled her letter campaign book. Photos: Gene Walsh/Times Herald.

“I feared that because of everything they’ve been through Sienna and Derek would have a victim’s mentality,” Oi Yin admits. They’ve worked hard to counter the possibility. “For her to do this project shows she doesn’t. I’ve always known that she’s a fighter, but it’s pretty cool to see her act on things and make things happen.”

Sienna joined her mother in Washington in June to present the over 1,000 letters she gathered to present to Congress. Some of the letters shared students experiences with cancer in their lives. Representative Patrick Meehan was moved to tears as Sienna read one of them.  Senator Bob Casey, in absentia, congratulated Sienna on her efforts and explained that he is a co-sponsor of a bill to amend the Public Health Service Act to provide for a Pancreatic Cancer Initiative.

“It’s crazy because she’s so shy,” Oi Yin marvels, “that made it even sweeter, she pushed out of her comfort zone to do this.”  It’s been an empowering year for the girl who turned eleven on the magical date 1/11/11.

When your young life has been wrought with both great love and great loss, what do you hold dear? Sienna shares the things she cherishes.

1. Everything Disney. The brand that Mickey built is alright in her book. “Disneyland and Disney World are fun. Disney movies and shows have good characters and great plots,” she says.

She dreams of going on a Disney Cruise.

2. Talking to My Dad. Sienna knows that Rafael is with her always.

Daddy’s little girl enjoys a beach day. “He always told me to do what’s right, he was smart and brave and kind.”

3. My Mac. “I really like my laptop. I look up videos on YouTube, video chat with my friends, use it for research and make videos on it for fun.” She also uses social media to spread the word about causes important to her– fighting pancreatic cancer, rallying for aid to Japan, ending animal cruelty and saving the planet.

She loves the song “Perfect,” by Pink and finds the video very touching.

4. Hanging with My Cousin Miranda. They’ve traveled together as far as the Bahamas and the aforementioned iChat has bridged the distance between their New York and Pennsylvania homes.

“She’s like my sister,” Sienna says.

5. My Dog.  Chase, the black and white whir of fur and frenetic energy joined the family, including other Bichon Frise, Snowball just months ago.

“Bichons rule!” she exclaims.

6. Travel.  “I like to see the wonders of the world.  I’ve been to the Bahamas and Canada and a lot of places in the US, mostly the north.  When asked where else she ‘d like to travel she replies, “I just wanna see everywhere.”

“My dream in life is to travel around the world and do research to raise awareness about saving the earth and animals.”  

7. Performing. A triple threat, Sienna has shown her acting, dancing and singing skills in recent months. She sang the Miley Cyrus song “Climb” in an April talent show at her school and secured a role in a local staging of Willy Wonka. She just wrapped the July production and vows “I’m gonna keep auditioning in local theaters.” Her shyness is irrelevant in this arena she says, “It’s kind of scary to get up and talk in front of people I don’t know, but for theater it’s different. I don’t get nervous before going on stage. I guess it feels kind of natural to be on.”

The stage provides golden respite from life’s harsher realities.

8. Animals. “I love all animals. I just came back from Animal-lover sleep away camp. We played animal games, went on field trips to animal shelters and veterinary hospitals and we learned all about animal safety and what to do with strays. I was surrounded by animals:  horses, dogs, cats, fish, gerbils, hamsters, ferrets and bunnies.

In her element at Dolphin Cay at Atlantis Resort Bahamas. She wants to show à la fave TV program Animal Planet “all the majestic animals and cool locations, so that maybe it will make people interested in saving them.

9. Horseback Riding.  She loves horses and last year began volunteering with the local Werkheiser family organization, Flying High, which provides equine-assisted autism therapy. She “grooms the horses, plays games with the kids and walks them on the horses.”

She’s been riding since age four.

10. Being with My Mom. She realizes just how precious time is with her mother, enjoying it from simple quotidian pleasures to fantastic trips.

“I’m glad to have my mom in my everyday life.”

For more information about Pancreatic Cancer Action Network, visit www.pancan.org.

To make your voice heard before congress in support of the initiative, visit http://www.capwiz.com/pancan/home/