For such a young lady, 10-year-old Lydia Stephen is already well acquainted with death. She no longer fears it. Twice, she’s drawn to the brink of it and bounced back miraculously. Her courage while staring into the face of it is nothing short of heroic.
That’s why they call her the “Warrior Princess.” This is her story.
The princess part is easy. Lydia is a gorgeous, magnetic little lady who loves the color pink, wears tiaras on her birthday and dances like Beyonce. The aggressive cancer that dug into the side of her face two years ago has done little to diminish that.
The second youngest of five kids raised by Nicole Ramdin and Joseph Stephen, Lydia grew up in Norwood — a happy, playful girl with long hair and a little bit of sass.
From a very young age, Lydia would sing and dance like her idol, Beyonce. And she was good.
“She was going to be a superstar,” says her mom, Nicole.
Lydia went to PS 94 near her home and made friends easily.
“People are just drawn to her,” says her second cousin, Shiva Williams.
Before she turned 8, Lydia rarely got sick. “One time she went to the ER because she had a fish bone stuck in her chest,” Nicole says.
But two years ago, just a couple of weeks before Thanksgiving, out of the blue, Lydia’s jaw started hurting. She couldn’t open her mouth. Nicole took her to the emergency room. Doctors told her she had an infection and would need to take some antibiotics. But after a couple of days, Lydia wasn’t improving.
“I went back to the hospital and told them I wanted Lydia to have a CAT scan,” Nicole says.
The scan revealed a significant tumor tucked awkwardly into the side of her jaw. They deemed it a rhabdomyosarcoma, a cancer that affects soft tissue, usually in the head and neck area, mostly in children, boys more than girls.
Like most cancers that affect children, it’s rare, says Dr. Jonathan Gill, Lydia’s doctor. Only about 350 cases are diagnosed each year. Lydia’s exceptional that way too.
Nicole struggled after the diagnosis. “I didn’t know how I was going to tell the rest of the family,” she says now, sitting next to Lydia, who is sound asleep in her hospital bed, skinny legs giving way to bright pink Hello Kitty socks.
It didn’t matter. Lydia did the talking. She told them cancer wasn’t like a cold, they couldn’t catch it from being around her. She told them it wasn’t because she was bad or did something wrong. It just happened.
“She didn’t feel sorry for herself,” Nicole says. “She’s so determined.”
Soon after the diagnosis, they started chemotherapy treatment. But it didn’t work, in fact the tumor “jumped” — it grew — and it made Lydia feel terrible.
They moved on to radiation. After 28 sessions, Lydia started feeling better, so they tried chemo again. This time, it almost killed her. She developed pneumonia and a severe infection in her chest and lungs.
At one point, in early 2011, doctors told Nicole that Lydia wasn’t going to make it. She hadn’t had a bowel movement in several days and they said that was a sign that her body was shutting down.
“They said, ‘That’s it, go home, make preparations for the funeral service or whatever religious ceremony you want to do,’” Nicole recalls hearing.
Two hours later, after barely being conscious for days, “Lydia took the biggest crap of her life, right there in bed,” says Nicole. “She must have known they were talking about her.”
From there, things improved rapidly. She had gone into the hospital in the winter. In the spring of 2011, she was released. Through steroids and other drugs, they controlled the tumor and symptoms.
“She went back to school, back to the park, back to being Lydia,” Nicole says. For nine months, she was “just a normal child.”
Except she was bald from all the treatments. Still, she refused to wear a wig. Others in the family shaved their heads in solidarity and Lydia had them all donate their hair to Locks of Love, a charity that makes wigs for cancer patients.
In March of this year, Lydia’s tumor began showing up on scans again. But her spirits remained high. After a couple of months of radiation, Lydia began feeling well enough to take a cruise with her mom to the Bahamas.
“Every picture is of her eating, swimming, smiling,” Nicole says. Lydia took over driving the jet ski, telling her mother she didn’t know how to ride it properly.
This past summer was almost normal, but still draining with all the treatments. After a rough day at the hospital, mom would clear out the living room, pour herself a glass of cold wine, kick her feet up and pretend she was back in the Bahamas. Lydia would join her on the beach with a glass of juice.
Toward the end of the summer, Lydia started to flag. Since then, she’s been in and out of the hospital. They’ve tried different treatments, some experimental, none that have worked well enough to get Lydia back to being a “normal girl” again.
Lydia’s life exists mostly on the ninth floor of the Children’s Hospital at Montefiore, which her mother raves about. All the doctors and nurses are her best friends. The sisters from St. Ann’s Church came over to sing to her and she did a little dance along with the music.
“She’s a rock star,” Dr. Gill says.
The prognosis isn’t good for Lydia. She’s deteriorating and the tumor is growing. She can’t open her left eye anymore. She weighs 43 pounds, which sounds low, but at one point, she dropped to 26 pounds.
“But she still tries to color and likes to watch TV,” Nicole says.
A couple of weeks ago, Lydia wasn’t breathing well. Her oxygen levels were low. She was basically in a coma. Doctors again expected the worst and told Nicole to gather family and friends together to say good-bye. More than 100 people crammed into her room, in the hallways, in the waiting room. All for Lydia.
She wasn’t ready. She woke up and opened her good eye and looked around and said, “Mom, what’s everyone doing here.”
Samantha Velez, who knows Lydia and her family from the neighborhood, says Lydia’s strength is now legend in the community. “She’s a warrior princess,” she says.
Lydia makes all of her own decisions when it comes to her treatment. “It’s the one thing she has control of,” Nicole says.
She doesn’t want to be resuscitated when the time comes. She’s okay with dying now. She even planned out her own funeral, which she calls a going away celebration. Everyone will wear pink, she says, and drink red wine. Because she knows she’ll never be married, Lydia wants to wear a white veil to her going away party.
People will sing and dance. Nobody will cry. Because that’s how Lydia wants it to be.
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Welcome to the Norwood News, a bi-weekly community newspaper that primarily serves the northwest Bronx communities of Norwood, Bedford Park, Fordham and University Heights. Through our Breaking Bronx blog, we focus on news and information for those neighborhoods, but aim to cover as much Bronx-related news as possible. Founded in 1988 by Mosholu Preservation Corporation, a not-for-profit affiliate of Montefiore Medical Center, the Norwood News began as a monthly and grew to a bi-weekly in 1994. In September 2003 the paper expanded to cover University Heights and now covers all the neighborhoods of Community District 7. The Norwood News exists to foster communication among citizens and organizations and to be a tool for neighborhood development efforts. The Norwood News runs the Bronx Youth Journalism Heard, a journalism training program for Bronx high school students. As you navigate this website, please let us know if you discover any glitches or if you have any suggestions. We’d love to hear from you. You can send e-mails to norwoodnews@norwoodnews.org or call us anytime (718) 324-4998.
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I was just brought to tears by this story of this very courageous little girl. I just love her attitude and her spirit! My love goes out to her and her family. She is a superstar in my book!
She is the most loved and best girl ever … And thank u for the comment .. She’s my heart my soul .. I love u my nena!!
From 2004-2009, I worked in the Radiation Oncology Department of the Mount Sinai Medical Center. My heart went out to the cancer patients; especially the children. Despite my experiences there, nevertheless, I cried like a baby while reading this article about Lydia, and then prayed for her, from the depth of my heart. We can all learn so much from Lydia about how to GRACEFULLY rise above life’s difficult circumstances. Is it any small wonder that the Old Testament states in Isaiah that “a child shall lead them…”, and in Matthew in the New Testament, “out of the mouth of babes…” (comes truth and praise)??
Situations like this give us a deeper appreciation of God’s word; a stronger need to lean not to our own understanding, but to trust Him, and believe that while we don’t understand why certain things happen, HE understands and will reveal all, in due time. While I can appreciate the “Warrior Princess” title, I personally believe Lydia is one of God’s “Ministering Angels”, sent to earth to show mankind how to live an abundant life, despite trials and tribulations. She is clearly “healed” in spirit, though not “cured” in body (yet?). May each and every one of us purpose in our hearts to keep the “Spirit of Nena” alive by striving to maintain a positive outlook, each and every day we are blessed to be on this earth. Lydia, I send you ALL my love and prayers. This is only my second time replying online, but I had to write to THANK YOU for sharing your strength and faith with the world. Blessings hermanita!!
I just wanted to send you our prayers Marty and I cried reading this article I remember meeting Lydia when she was born she and my daughter use to play together we are all praying for you Lydia God Bless you little beautiful angel❤
Thank u all for the love … But Lydia my goddaughter my heart died today ..
Dear Camille,
I send my most heart-felt condolences to you and the entire Stephen family. I will continue to pray that God helps you all through the difficult days ahead. Take some small comfort in knowing that Lydia inspired many, including complete strangers, like me.
i have know her family for many years for the neighborhood and she came from a very good family……she was a Warrior Princess is write just seeing her video on how she spoke but chills on my body this lil angel was not afraid of death…..she was such a funny lil girl and happy…..rip nena you will always be remembered……
To the Stephan Family- Although i have never met Lydia or her family—WOW reading this article made me cry…My heartfelt condolences go out to you all. I was so touched and so moved by her story; it left me so Amazed that such a beautiful little girl would live her life as if nothing is wrong but smiling and enjoying every moment life had to offer! May Lydia the warrior princess legacy continue to inspire and live on!!!May God continue to help you and your family through this difficult time but always remember all the happy moments and how beautiful she was!
As I did not know the family but my daughter did I could not imagine the feelings and emotions that this entire family is going through. My condolances to you all. I can’t stop my tears from falling as for this little princess was taken from us In such short time. She is that bright star that shines on us every night.
Never knew the whole story but this most deff brought pain to my chest and chills up my spine… SLEEP IN PEACE NOW PRINCESS
I miss Lydia was in my school nice girl I will miss her from her friend