On Oct. 16, Kelli and George Tucker faced a wrenching choice: Have doctors amputate their 10-year-old son’s leg due to cancer, or try to save the leg, put him through repeated, painful surgeries and risk that the cancer might take him.
They decided to take off the leg.
They told their son, Marik, their decision.
“We just made it sound really positive,” said Kelli Tucker, of Groton. “(We said) ‘You’re going to get a cool metal leg, you’re going to be part robot. This is going to be really cool.'”
And because he’s always been such a sunny child, Marik agreed.
They took his leg on Nov. 27 up to his mid thigh, and he was awake 30 minutes later. He asked to see it. His parents pulled up the sheet and showed him the temporary prosthetic - red and green for Christmas.
“He was like, ‘Oh, that’s awesome. Can I have a Popsicle now?'” Kelli Tucker said.
“You can’t sit around and be negative when he’s so positive.”
“His smile alone makes your day that much better,” George Tucker said.
Marik has lost his hair to chemotherapy, but he wears shorts in December to show off his leg. “I want everyone to see my prosthetic leg because it’s cool,” he said.
The Tuckers moved from Louisiana to Groton in July, shortly before their son was diagnosed with bone cancer. The family lives in Navy housing; George Tucker works at Naval Submarine Base New London.
Marik loves to run, and he wanted a prosthetic running foot after he lost his leg, but insurance doesn’t cover it. At $15,000 to $17,000, his family couldn’t afford to give their son that gift.
Then Kim Dahill, a longstanding member of Wish Upon A Hero, a social networking organization that grants wishes, wrote a letter to New England Orthotic and Prosthetic Systems in Harrison, N.Y., Dec. 14 asking for a donation.
They answered two days later: The group would donate a prosthetic running foot to Marik for free.
Marik’s a fourth grader at Charles Barnum Elementary, but has only been to school three days due to his illness. His older sister, Shelby, 15, is at Fitch High School and struggling to cope with what her brother's been through.
“You couldn’t make her life any worse than what it is right now,” Kelli Tucker said. “We moved her across the country from her friends and her family, she’s at a new school that’s huge, and she’s dealing with this with her brother. She’s like a rock bottom right now.”
Marik also has a younger sister.
Signs of illness
Kelli Tucker said she first saw a sign something might be wrong right before they moved. Marik was jumping off the driving board at the pool one day, and came up limping. He said his leg bothered him, but it didn’t seem bad.
The pain came and went. They figured he’d strained a muscle.
Then after the move, it got worse. They took Marik to a doctor for X-rays, and he saw a small fracture that had healed, and something else; a tiny spot on the X-ray. Marik went to an orthopedic doctor, then for an MRI and CAT scan, then to Yale.
There, a surgeon opened the leg for a better look. He called the Tuckers into a small room about 20 minutes into surgery.
“I got a pit in my stomach. I just could hardly breathe,” Kelli Tucker said. Her husband, who she said tends to be more positive, reassured her. They waited in the room for 15 minutes without saying much.
Then the doctor arrived and told them their son had cancer.
“I just leaned over on (my husband), covered my face and just cried and cried,” Kelli Tucker said. “Truthfully, I don’t know what he said after that.”
Further study diagnosed Marik with Osteosarcoma, cancer that starts in the bones and can move to other tissue.
He was admitted and underwent 12 weeks of chemotherapy.
A painful decision
The couple had told their son he had something bad in his leg, he'd need a lot of time in the hospital, and he'd need a lot of medicine. But he remained positive, even when he was sick, they said. He never complained.
Then came more news.
Doctors said it wasn’t possible to save Marik's leg. It would take repeated, painful surgeries, and then he might not survive.
“To me, it’s been a complete wake up call,” George Tucker said of the whole experience. “I mean, you always think it will never happen to you.”
“Essentially, it’s like living one of the worst dreams possible. It’s like being in a nightmare.”
The couple sought a second opinion in Boston and received the same advice. They made their decision and told their son.
“We just said, 'It doesn’t look like you’re leg’s getting any better, we’re just going to go ahead and take your leg off and give you a new metal leg',” Kelli Tucker said. “And he was never upset about it. I can honestly say, he was just like, 'OK'.”
Doctors learned after the surgery that bone in Marik's leg still had a good deal of live cancer in it, meaning he'd been a poor responder to chemotherapy. Since Osteosarcoma can spread to other tissue like the lungs, doctors have lengthened his chemotherapy time to 40 weeks.
A new leg
Marik starts getting fitted for his permanent prosthesis next week, and will have the Dallas Cowboys logo on it, which he picked. He was born severely hearing impaired, so the family has always had him in schools for the deaf, though in Groton, they made arrangements to have him in a regular classroom with an additional teacher to help him.
He wants to go back.
“He’s a remarkable kid," Kelli Tucke said. "He doesn’t complain about going to the hospital, he just takes the shots and he just takes all of his medicine and he just ever complains about anything.
"The only thing he’s upset about is not being able to go to school.”
He goes back to the hospital Jan. 2 for about three weeks.
The Tuckers said they weren’t prepared for what it would be like to have a child with a prosthetic limb, and they’re still finding their way. They’ve had some help; the other Navy wives brought food when Marik was first diagnosed, and an organization held a fundraiser Dec. 7 to raise money for their trips to the hospital.
Kelli Tucker said sometimes it's hard to accept these things. She is on unpaid medical leave from her job as an opthomolic photographer.
'He loves to run'
The family set up a P.O box so people could send Marik cards, and they’ve already started pouring in.
He said he's looking forward to Christmas. He wants Spy Gear this year.
“I’m excited,” he said.
When he gets well, he said he wants to run. His mother is sure he will.
“I really feel like he’s going to be in the Paralympics one day,” she said. “He loves to run, so that’s where we’re going. Everything that he wants, we want to happen for him.”
To send a card to the Tuckers, address it to: P.O. Box 488, Gales Ferry, CT, 06335.