Boy faces illness bravely: Family appreciative of community s support

Like a lot of kids, Erik Jenkins spent last spring and summer playing baseball in the town s recreational league.

But as the season went on, Erik, who was 12 at the time, began to have pain in his leg especially near his knee. His parents thought he had just pulled a muscle, and Erik really wanted to play.

His mother, Lucy Jenkins, took Erik to the doctor s in mid-August to make sure everything was OK. A few days later the Jenkins family would learn that Erik, a seventh grader, had Osteosarcoma, a rare form of bone cancer.

It s like something you watch on TV, Lucy said this week. It s not real for the first few weeks. You feel like you re sleepwalking. You have this overwhelming feeling of I wish it were me and not my kid. Not my baby.

The diagnosis came from specialists at Children s Hospital. The Jenkins knew something was up after a group of doctors spoke in hushed tones about the results of Erik s MRI.

Lucy said Erik s strength and positive attitude have made things a little easier on the family. His whole outlook saved me a lot of pain, she said. This type of cancer does not run in Erik s family, and so it was particularly shocking.

One day Erik was at the pediatrician and was told his leg was not fractured but to stay off it. Hours later, he was called back for more testing.

The diagnosis has brought about a lot of tough decisions for the Jenkins family. First there was Erik s treatments, and his leg. Then there was Lucy s job and business. And what to do about Erik s four sisters?

Scott and Lucy Jenkins oldest daughter, Caitlin, 18, considered putting off her freshman year of college at U-Mass, Amherst, to stay home and help with her four younger siblings. But her parents talked her out of it.

Erin, 10, who is closest in age to Erik, has taken things really hard, Lucy said.

And there was the decision of whether to keep the youngest two, Rori, 6, and Cara, 4, in daycare.

Scott, Erik s father, had to keep working since the family gets health insurance through his job as an electrician.

Then there s the trips to the hospital, three weeks on chemo, which include a three to four day hospital stay then two to three days off before Erik goes back. Then two weeks at home to allow Erik s immune system to recover.

Erik has also lost weight and his hair as a result of the treatments.

The trips back and forth require a lot of behind the scenes work for the Jenkins family, trying to juggle the sale of Lucy s clinical laboratory business in Norwell and the hiring of someone to fill in in the meantime, rides back and forth to the youngest two s daycare in Norwell, and arranging it so Erik is not by himself.

Erik has also kept up with his class work, going to Hanover Middle School via the World Wide Web from the comfort of his room. Eric is able to see what is going on in his classes and participate. His classmates are also able to see him, on another computer in the classroom. I like going there in person, but it s cool, Erik said.

Erik, who celebrated his 13th birthday Sunday, has had some big decisions to make. In November, he faced potentially the biggest of his life up to this point, when he decided what to do about his leg.

After Erik was diagnosed with Osteosarcoma, with the tumor located on his upper thigh, he had three choices, all of which required the removal of his femur.

Lucy said her son could either have a steel rod or cadaver bone implanted in his thigh, have his leg amputated at the thigh, or have his lower leg bone removed, and implanted backwards as his upper leg allowing the leg to be amputated at the knee.

Lucy and Scott let Erik make the decision. But before he did so, he was able to meet a kid who had gone through with each of the options.

The child who had a steel rod implanted seemed to be the least mobile of the three. With a bone implant, the recipient runs the risk of their body rejecting the bone. The kid who went with the rotation plasty, or implanting the lower leg bone backwards to serve as the femur, seemed to get around the best.

In the end, it was the decision Erik went with. He had the surgery just past Thanksgiving, on Nov. 27. With this option, Erik s anklebone will serve as his knee bone and he will be fitted for a prosthetic leg from the knee down.

Lucy said keeping the knee will allow Erik to move around easier, and he will have no restrictions on the type of activity he will be able to do once he is better. Which is great since he likes to play sports and bike, she said.

He could have had the limb-sparing surgery and continued to look like a normal kid, Lucy said. But he said I just want to go ahead and get my life back. I thought it was really brave of him.

Lucy is in awe of her son, having made a decision like that at such a young age.

Erik spent the month of December recovering. He was home on Monday (Jan. 14) and will go into Children s Hospital for another round of chemotherapy this week. Erik said he s feeling good and wants to thank everyone who has helped his family.

Lucy said Erik now faces another seven months of chemotherapy. Though the tumor has been removed, doctors want to make sure they get rid of any possibility of it coming back.

This experience has been the hardest thing her family has been through.

It s absolutely horrifying, Lucy said. You hear these things happening to other people and then you can t sleep at night and then it happens to you and its like oh my goodness.

The family is thankful for the outpouring of support the community has shown them.

When it happened, I didn t call anyone at first, Lucy said. But once word started getting out, the response was incredible.

From staff at her children s daycare in Norwell sending the family meals two days a week to the fundraiser held by the daycare, by the Hanover Youth Athletic Association, by Hanover Middle School and the Newcomer s Club. Then there have been the calls, cards, visits and kind words.

Last week, there was a blood drive at Hanover Middle School in honor of Erik.

Lucy said with her quitting her job and being in the process of selling her business, everything has been so helpful. The funds have allowed her to keep her youngest two at Kindercare, maintaining their normal schedule.

Erik s fellow students have been nothing but nice and supportive, offering help when he s in the building and out.

The school has set up video conferencing for Erik and sent tutors to their home to make sure Erik progresses on to the eighth grade next year.

Lucy said she wants to thank everyone from the bottom of her heart. The warmth that s come from people has been incredible, she said. It has been just so sustaining. It will be paid forward.

Lucy said the family plans to throw a big party this summer when Erik is done with chemo.

Reporter Tessa Fitzgerald can be reached at tfitzger@cnc.com

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