MONTANA AVE — Nearly two hundred students from Franklin Elementary School walked with their parents and teachers along Montana Avenue Wednesday in support of a classmate who is battling a rare and aggressive form of cancer.
Seated on his mother’s lap and wearing a custom fireman’s jacket courtesy of the Santa Monica Fire Department, Jeffrey Hughes Jr. waved from the front seat of a fire engine as his classmates chanted his name, some holding up handmade signs that read “May The Force Be With You,” a line from the “Star Wars” series, Jeffrey’s favorite.
Instead of spending his days playing Prince Charming in his church’s production of “Cinderella” or playing flag football with the Franklin Spartans, Jeffrey, 8, has been in and out of hospitals over the last two months, subjecting his small body to chemotherapy and stem cell harvesting in hopes of eradicating the desmoplastic small-round-cell tumor, a soft tissue sarcoma, that has surfaced in his abdomen.
Little is known about the cancer. Only a few hundred cases have been diagnosed since the early 1990s when it was first identified. No environmental or familial risk factors have been identified for this tumor and doctors are still trying to determine the best form of treatment. There are also very few warning signs. Overall survival rate is poor — less than 20 percent, according to St. Jude’s Children’s Research Hospital.
Jeffrey’s diagnosis was devastating for his family, but with the help of relatives, friends and sometimes strangers, they have been able to remain hopeful. They have set up a website — http://jeffreyhughes.shutterfly.com/ — where supporters can keep track of Jeffrey’s progress, check out photos and donate funds to help the family cover his treatments. As of Wednesday there was close to 630 followers and nearly two dozen families who have donated $1,000 or more.
“This has been an incredibly stressful time for us, but we have been able to keep our spirits up because of the love and support from those around us. We get a lot of love from everybody,” said Jeffrey’s father, Jeff Hughes, a third generation Santa Monican who founded Legal Grind, a coffee house that also offers customers affordable legal advice.
“It’s easy to be despondent at a time like this,” Hughes said. “Your life changes so dramatically. You think your son has a sinus infection and then all of a sudden it’s one of the rarest forms of cancer. The community has helped us keep the faith and take care of things so that we don’t just spin off into some surreal world.”
Jeffrey’s cancer was discovered by accident, Hughes said. Jeffrey, who has been described as a fun-loving child with an old soul, checked into the hospital in October for an unrelated surgery that the family thought was the cause for their son’s lack of energy and inability to sleep through the night. Following the surgery, they expected him to start gaining weight and be more energetic. He played baseball and flag football and showed an interest in theatre.
But when that didn’t happen, they went back to the hospital and learned something more serious than a sinus infection was the culprit. Jeffrey was immediately admitted for chemotherapy as tumors began to spread toward his heart, Hughes said.
Jeffrey’s parents had to call in family to watch their three other children as they spent nearly every minute with their son at the hospital. Over the next few weeks, as word spread about his condition, friends at Franklin and at the family’s church, First United Methodist, began offering support in many forms, from donating money and food to making origami cranes and shaving heads in solidarity after Jeffrey lost his hair because of the chemo.
“Everyone has really rallied around this family,” said The Rev. Patricia Farris, senior minister at First United Methodist Church of Santa Monica where Hughes is a Sunday school teacher. “This is really testimony to the best of Santa Monica and what we are about and how we care for one another.
“Obviously this is a serious situation,” Farris added. “We just want to keep the emphasis on the positive and the hope and the power of body and spirit to heal. We just want to support that little boy and his family with all the positive love and energy we can send his way.”
If anyone knows the importance of having that support it’s Franklin Principal Tara Brown. She lost her young son five years ago to cancer.
“I want better for Jeffrey,” Brown said. “I want him and his family to know they are loved.”
Brown said students have shaved their heads in solidarity and find time to chat with Jeffrey on Skype when he is in the hospital so he can stay connected.
“This is a little boy who is showing a lot of courage, strength and determination, and we want to be there for him,” she said. “This community is really unique and like no other that I’ve ever been a part of.”
Krista Strauss, who met Hughes when he coached little league, helped set up the website for Jeffrey’s family and was critical to organizing the walk. She was beaming Wednesday as one kid ran up to her with cash in hand wanting to contribute to Jeffrey’s fund.
“This is just incredible,” she said. “It’s very impressive.”
What’s more impressive is Jeffrey’s attitude. While he has every excuse to be angry and depressed, Hughes said his son still finds time to smile, like when a Franklin dad, Steve Barnett, gave him a “Star Wars” collectible courtesy of his employers LucasFilm Animation. Jeffrey has taken time out to write thank you notes and to pray.
“He’s just a special boy,” Hughes said. “He only gets stronger when all the chips are on the table, and right now, all the chips are on the table.”
But at least for a few hours Wednesday Jeffrey had the rare opportunity to spend time with his friends and just be a kid again.