HAMPTON — Joanna "Jojo" Sibert lolls on her mother's lap, her body pressed into its contours. She lets one leg drop to the side, the only departure from an otherwise seamless melding of the two. A soft Mona-Lisa smile flickers across her face as her mother talks.
Completely in sync, like a couple of love birds, they're also a study in contrasts. Jojo's blond fuzz is a pale reflection of her mother's inch-long hair. The pallor of her skin seems more pronounced next to the bold, colorful tattoos that cover Lorie's chest and arms. An inspirational verse from Philippians 4:13 sweeps the length of her left arm; in its shadow, close to her wrist, a tiny inked heart encircles the initial "J."
Their intense love for one another is palpable. It's evident in their glances, their physical closeness, their banter and their lockstep approach to making the most of life against all adversity. "Her and Jojo, honestly, they have the most loving and caring relationship I have ever seen in a mom and daughter. Words can't describe it," says Ashley Simpson, a longtime friend.
Since Jojo was born with spina bifida eight years ago, they have tackled her multiple health problems with a mixture of bravado, persistence and humor.
"The closeness they share is something very special. I often joke with Lorie, 'You're like a mama bear with a cub.' She's got this fierceness, a protective fierceness," says her friend Jen Villarreal, whose husband, Freddy, is the pastor of Freedom Life Church that the family attends.
For eight years Lorie has been a nonstop advocate for Jojo, pushing doctors to provide her the best, pushing her little girl to walk and sing and joke — to be just like other kids despite major physical handicaps. "Everything they said she wouldn't do, she did. She's a determined little thing. It didn't just happen, she worked at it," says Jojo's grandmother Della Heath. "They were going to put a bag on her and leave her in a wheelchair."
Together they've been through more than a dozen surgeries — to restore her spine, to install a shunt, to create a bladder — and most recently, radiation and chemotherapy for a rare form of cancer.
"I see other families and women go through stuff with their kids," says Villarreal. "There's this acceptance when the doctor gives them a diagnosis. Lorie won't just take it. She attacks the situation. She does the research. She demands the best care. Lorie's so in tune with Jojo, she knows exactly what she needs." Jojo's oncologist, Anthony Villella agrees. "She asks a lot of questions. She holds everyone to a high standard and makes everyone take care of her the way they should," he says. "Jojo went through the treatments with flying colors largely because of support from her mom. They have quite a remarkable relationship."
Jojo is small for her age, her body doesn't produce any growth hormone and after her diagnosis last July with rhabdomyosarcoma, a cancer that attacks the muscles, she had to stop taking medication to simulate it. Jojo also had to interrupt treatment she was receiving in Canada for brittle bone disease that was diagnosed in 2008. Her cancer symptom was a droopy left eye. In 20 years of practice as a pediatric ophthalmologist, Denise Chamblee had never seen this type of orbital tumor before.
For years, in her regular visits to CHKD, Lorie had comforted herself by saying "at least she doesn't have cancer. It could be worse."
But there's no room for self-pity in their world. When chemotherapy caused Jojo's hair to fall out in tufts, Lorie had both their heads shaved. "There's nothing she wouldn't do for her," says her friend Simpson. The pair gave their tresses to Locks of Love. Now, just a week after Jojo's final — her 24th — chemotherapy treatment, they're talking about collecting toys for other patients at Children's Hospital of the King's Daughters in Norfolk. "Did you know that once you use the PlayDoh, that's it, it has to be replaced?" asks Lorie.
It's just the way they are. "They're both such giving people," says Heath. "They're my idols. Jojo worries about everyone else. She worries more about her mom than herself."
Lorie has spent countless hours at her daughter's bedside. She has held her hand when she asked if she's going to die. She's endured the pain of the tattoo needle inscribing "I can do all things through Him who strengthens me" on the tender skin of her forearm. She has uprooted and spent months in Boston to take advantage of proton therapy treatment, just the two of them, except for week-long visits from Jojo's sisters Faith, 10, and Brittany,13, and the girls' father. "The tumor was behind her eye, 1 centimeter from her brain. We have a proton therapy center locally, but they don't use sedation yet," Lorie explains. Jojo had 23 treatments and her eyesight was left intact.
Their bond grew even stronger while away from home. "We've become buddies — sleeping buddies. What have I done?" the 34-year-old mom asks with a giggle.
From October to January, the tumor looked the same. "The main thing is that it shouldn't change," Lorie says. Every three months she must have an MRI, a bone scan, a CT. Barely a week goes by without a doctor's visit or medical procedure. "There's a 90 percent chance that we got this. As a parent I want to hear 100 percent," she says. She prayed for a full remission with her pastor Freddy Villarreal.
He credits Lorie with being an inspiration to others. "She's committed everything to fighting illness after illness. She's recently put her faith in God and she has been able to bring other people in," he says. "It's a neat moment for her for her faith to come alive."
Lorie has endured her daughter being "a pincushion," "the grayish look, the cancer look," her begging to go home through hours of waiting, waiting, waiting at hospitals and doctors' offices. "I don't know anyone else who could go through watching what Joanna's been through. Look up 'superwoman' in the dictionary and their faces, both of them, would be there," says Simpson. "Lorie has a tough shell but she's soft inside. I've seen both sides, I've seen when she's scared and at a loss, too."
Lorie looks down at her sprawled daughter. "Did it make you sick? Made you feel yucky? Glad it's over?" she quizzes Jojo about the chemo. Jojo nods agreement to each query, and smiles. She smiles a lot. "She keeps you laughing. She keeps her mom's spirits up because she's such a happy-go-lucky kid," her grandmother says.
Lorie talks openly. "I cry a lot," she admits, "but not in front of the kids." Jojo looks up and contradicts her gently. "You do," she says with a mischievous grin.
"The hardest thing is being helpless," Lorie continues. "You want to protect your child. To cure her you have to put these toxins in her body. Why? I had to stop asking why. We're going to kick cancer's ass. It's going to be a total knockout," she says. Jojo responds rapid-fire, "You owe me a dollar." Lorie explains that she has to pay her daughter when she curses.
They've recently moved into Lorie's childhood home, brightening up the rooms with fresh new paint. Jojo has chosen bubblegum pink for her bedroom. The neat, sparsely furnished living room includes a kid-size black recliner, complete with cup-holder. It's Lorie's gift to Jojo and she leaves her mother's lap to kick back in it, floating a get-well balloon in one hand, and clasping a pretend drink in the other, showing off her pink nail polish. Lilly, the Yorkie, has been temporarily banished; her sisters are out with their grandmother. "They're shy," says Lorie. "I'm shy too," whispers Jojo, with a coy smile.
She plays with a stuffed animal, stroking the nameless white cat absent-mindedly. "I like to play with Barbies," she says. "I have a lot. I got a Barbie house from Santa."
Together, they've celebrated birthdays and milestones, becoming masters of adaptation. "New Year's was a prime example," says Lorie, who was planning to go out. She had all the set-ups for the girls to party at home with grandma — ice cream sundaes, favors, hats and horns, when Jojo had to go to the emergency room. Then she was admitted. So, Lorie doubled back to Hampton from Norfolk, picked up the party trimmings, scooped up the family and they partied in the hospital room. Friends and family marvel that Lorie finds time for all the girls and their activities too.
They don't miss an opportunity. Birthdays include karaoke, dancing and videos. At the end of January, a week after being declared "in remission" — "this type of cancer never completely goes away," says Lorie — Hot Dog King on Jefferson Avenue in Newport News opened specially for them on a Sunday. The cake had a picture of "Princess Jojo" with an inscription about how she "kicked cancer's butt." (Another dollar?) Lorie's pastor was there, her extended family and a dozen of Jojo's school friends from Asbury Elementary, where she hopes to return later this month. There was lots of chatter and laughter and eating.
The best thing that's happened, mother and daughter agree, is being back under the same roof again with Brittany and Faith. "It's hard on them too. It's hard on the whole family," says Lorie. For her mother, Della, "It's just miraculous. They are just so close. Their bond is remarkable."
We first met Hampton resident Lorie, 34, and her three daughters — Brittany, 13, Faith, 10, and Jojo, 8 — in August 2011, after Jojo was diagnosed with rhabdomyosarcoma, a rare form of cancer that attacks the muscles. Her symptom was a droopy left eye.
Jojo was born with spina bifida and has had more than a dozen corrective surgeries; her body does not produce human growth hormone and in 2008 she was diagnosed with brittle bone disease. She has a permanent shunt to drain fluid from her brain and she is catheterized.
Before her cancer diagnosis she was attending school at Asbury Elementary; she loves to read and play with Barbies.
• Anyone wanting to contribute to Jojo's toy drive for CHKD can contact Lorie by email, firstname.lastname@example.org.
•Lorie maintains a Facebook page for Jojo, http://www.facebook.com/jojosjourney.