The Just Because Foundation — a promise to JB

When Chevaughn and Noel Joseph’s young son JB was diagnosed with cancer, they promised him they would help other sick children. Nearly a decade later, the Just Because Foundation supports families at their time of greatest need, Lisa Allen-Agostini discovers

Noel and Chevaughn Joseph (at left) with a Grenadian family helped by the Just Because Foundation: baby Shemmia with her parents Alisha and Shem. Photo by Warren Le Platte

The wall beside Chevaughn Joseph’s desk at Mt Hope Paediatric Hospital in Trinidad is covered with pictures. One is a child’s hand-drawn thank-you note; another, the front page of a child’s funeral programme. One bears a small pair of handprints in yellow paint. The hands were her son’s. He died of a rare form of cancer in 2007. He was not yet six.

Chevaughn and her husband Noel are president and chairman, respectively, of the Just Because Foundation — JBF, for short. They co-founded the not-for-profit paediatric cancer support organisation and named it after their son Jabez, whom Chevaughn called JB. Jabez is a biblical name, Noel explained to a recent visitor to the JBF office — most people know it for Jabez’s prayer in the First Book of Chronicles, a prayer asking for gifts from God, and which, the Bible says, God granted. Chevaughn never liked the name, because it means “born in pain,” she says.

But JB Joseph was a happy child, and continued to be so even while he endured years of treatment for alveolar rhabdomyosarcoma of the tongue. On February 15, 2005, Chevaughn found a lump on JB’s jaw. It was the size of a T&T ten-cent piece, about 1.6 centimetres in diameter. In two weeks, as his parents took him to doctor after doctor to diagnose its cause, the lump grew to the size of a lime, then the size of an orange.

When she talks about her children — whether the dozens of children she has helped through JBF, or her surviving child, RaVen, now a teenager who plans to become a surgeon — Chevaughn Joseph gets fierce. Her dark eyes flash, and the dimples in her chin and cheeks deepen as her face becomes set. You can imagine how she, along with the more placid Noel, fought to find out what exactly was wrong with their son — and, having got the diagnosis, exactly how best to help him.

“The process was challenging,” Chevaughn recalls. “We had some really good doctors. But we had some not so amazing times.” The challenges she glosses over include two misdiagnoses, and a doctor who coolly advised them their son’s affliction could either be a virus or cancer. After JB’s tumorectomy, their oncologist sent a sample to a lab in Britain. “Having the right microscope to see those cells made a huge difference,” Noel says. Alveolar rhabdomyosarcoma is “a very aggressive form of cancer.”

Eventually, with that oncologist’s help, the family went to a hospital in Newcastle, where JB had “more than half his tongue” removed, Chevaughn says. The experience literally changed their lives.

In spite of the terrible circumstances of their visit, they were made to feel welcome, housed for two weeks close to the hospital in a “home away from home,” and even treated to an anniversary lunch. RaVen, as JB’s sibling, was also kept occupied by a charity, the Rainbow Trust, while JB had his treatment. “We were bombarded with every possible service to make sure our stay was second to none,” Chevaughn says.

“What we encountered on the trip was professionalism, a system,” Noel adds. There was a “multi-disciplinary team looking at a single patient” — oncologist, radiographer, hematologist, and so on, all working together. There was even art and craft and entertainment on the children’s wards. RaVen and JB called it “hospital heaven.”

This is what they promised JB they would recreate for him when he got back to T&T.

In 2005, Noel was an advertising industry producer who had recently become self-employed. Chevaugn, a marketer whom Noel describes as the “ice-to-Eskimos type,” had just set up her own company when JB fell ill. “All of which we describe as preparation for the Just Because Foundation,” Noel jokes. They use their professional skills in doing the work of the foundation, from branding and advertising to fundraising and administration. They have a driver and an administrative assistant, a management team and a tiny board. Some days, Noel says, they have to sell T-shirts, mugs, and teddy bears to make ends meet.

With little but tallawah resources, JBF established and operates a hospital ward for children with chronic, non-communicable diseases. JBF has run with the idea of the home-away-from-home, renting a house where they put up families of patients who live far from Mt Hope. The foundation has sourced equipment for the ward, chemotherapy for patients, and counselling for patients and families. Their Wishing Well programme grants sick children’s wishes. Sometimes JBF assists families with other non-medical needs. Having a child with cancer or heart disease can be devastating for anybody, but if a single parent has to leave work for a month or a year to be with a sick child, the repercussions can be harsh.

Major sponsors of the JBF Specialty Unit at Mt Hope Paediatric have plaques in their honour mounted on a wall. These are the funders who pay for or provide facilities like the comfortable parents’ lounge, the well-equipped playroom and library, and the recliners next to every bed on the ward, where, at any hour, parents can be seen at their sick children’s sides.

T&T’s Ministry of Health recently began giving JBF a monthly stipend. It covers some fixed costs, like the rental of their three-bedroom home-away-from-home and salaries for their two staff members. The needs, however, mount daily. Apart from maintenance, there’s attrition of portable assets like computers and cable boxes, and JBF supplies toiletries and meals to parents of children on the ward.

Their big annual fundraiser, the Kiddie K walk and health fair, can only do so much. Right now, JBF is reaching out to long-term corporate sponsors — especially ones with regional reach. The foundation has helped families from across the Caribbean, and though non-nationals of T&T have to pay for medical services at Mt Hope, JBF gives their support free of charge to everyone.

Of course, they also welcome volunteers and individual donations, no matter how small — one regular donor, a pensioner, gives $25 a month. “That’s her widow’s mite, that’s what she can do,” says Noel. Donors willing to adopt a family can work with the Josephs and JBF to decide how much to give.

JBF is also growing. The foundation wants to build a ten-bedroom home-away-from-home for families whose children are being treated. Like the “hospital heaven” in Newcastle, it will be top of the line. They will need labour, building materials, and furnishings to make the dream come true.

But Chevaughn and Noel are sure in their purpose. “I know this is why JB came, this is why he got sick, this is why he died,” Chevaugn says. “I don’t wonder if this is what God wants me to do — I know.”

Childhood cancer early-warning signs

• Continued, unexplained weight loss

• Headaches, often with early morning vomiting

• Increased pain in bones, joints, back, or legs

• Lumps or unexplained masses

• Development of excessive bruising, bleeding, or rash

• Constant infections

• A whitish colour behind the pupils

• Nausea that persists or vomiting without nausea

• Constant tiredness or noticeable paleness

• Eye or vision changes which occur suddenly

• Recurrent or persistent fevers of unknown origin

To find out how you can help the Just Because Foundation, visit www.thejustbecausefoundation.com.