Sometimes, Trevor Sims wakes up screaming in pain. Earlier this year, a tumor in his throat turned what should have been a fun time — a day at the beach — into the worst moment of his 10-year-old life.
“I was just falling to the sand,” he said. “I couldn’t do anything. I could barely breathe.”
He was diagnosed with Stage 4 embryonal rhabdomyosarcoma five years ago. Initially, doctors thought his odds were good. But, the cancer kept returning, and is now terminal.
After this grim diagnosis was delivered, Trevor’s mother, Allison, and staff at Cancer Services of Greater Baton Rouge asked him for things he wanted to do before he died. Some of his answers were expected, like certain toys and a trip to Disney World. Another wish caught everyone by surprise. He said he wanted to feed the homeless.
“At one point, my mom, she couldn’t work because she had to watch me because I had cancer, and we didn’t have no food because we couldn’t afford any,” Trevor said. “So, I thought it was so bad for us that nobody should have to be hungry.”
Next week, a citywide effort will take place to help make that a reality.
Called “Trevor’s Wish,” a food drive to benefit the Greater Baton Rouge Food Bank will be held Sept. 1-7. Donation barrels will be located at 10 area Community Coffee stores, as well as more than three dozen other locations listed at brfoodbank.org.
Jeanne McCollister McNeil organized the effort after Trevor appeared at a Healing Place Church worship service on July 28. The congregation prayed for him and others connected to the church’s cancer ministry, and he spoke about his desire to help the less fortunate.
“He’s very articulate, and he’s very aware,” McNeil said. “It’s uncommon to hear a child … talk about, ‘Well, I’m dying, and this is what I want to be remembered for, and I want everyone to know I’m thankful.’ It’s crazy to listen to someone who has come to terms with it, but he’s still so positive and optimistic about life in general.”
When Trevor was 5, he began having headaches, which a doctor diagnosed as an ear infection. After two and a half months, he was referred to an ear, nose and throat specialist.
“I knew something was terribly wrong, because Trevor never was sick or complained of any pain,” Allison Sims said. “Finally, whenever we went to the ENT, as soon as he looked inside of his throat he saw the mass.”
That tumor was located behind nasal cavities and his left cheek and extended into the back of his throat and base of his brain. Eleven months of chemotherapy and six months of radiation treatments sent the cancer into remission, but it reappeared along Trevor’s spine. Treatment achieved remission again, but the tumors returned. Now there are tumors in to his lungs and throat.
“His body is too weak to receive any more high-dose chemotherapy like he’s had in the past, and he’s maxed out on radiation,” Allison Sims said.
Through it all, though, he has maintained an attitude that amazes adults around him, including Judi Davis, who administers the Healing Place Church cancer ministry. After Trevor expressed his interest in helping the homeless, the church let him participate in one of its homeless outreach events.
“When we went on this homeless outreach, we were all in the church van, and I had noticed all day that Trevor was just so thankful and grateful for everything, and what everybody was doing,” Davis said. “It just seemed mature for a 10-year-old to have this kind of response. … He even apologized to me over and over when he felt bad and had to lie down — just real sensitivity.
“When we were taking him back, I said, ‘Trevor, I’m just really, really impressed with you and how you’re so grateful and thankful for everything that everybody is doing for you. It just brought me to tears when this kid looked at me and said, ‘Well, Miss Judy, I’m dying, and I never want to die and be known as that kid that was not thankful.’ He just says stuff like that that blows you away. He’s just got a real good grip on life.”
His physical grip on life was extremely tenuous just three weeks ago, when the tumor in his throat began closing off his ability to breathe or swallow.
Since taking an experimental oral chemotherapy, he has felt much more normal.
“He’s the first child to try this medicine, and he has not asked for pain medicine in over a week and he is off of the oxygen,” Allison Sims said. “It’s doing something.”
“It’s not the medicine, Mom,” Trevor said. “It’s God.”
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