Alma O'Brien knew something was wrong with her 9-year-old son, Paddy, when he complained about discomfort in his lower leg. At first, they chalked it up to growing pains or from a bruise he got while playing soccer. The Mill Valley, Calif. fifth grader had been playing in a select soccer league all summer and aches and pains were a part of the game.
But this was different. Weeks went by and Paddy started slowing down. He was so tired that one day after school he came home and went straight to bed. Paddy's mother needed to know what was going on. The day after Christmas, Paddy was crying in pain, so Alma took him to the emergency room.
An MRI revealed Paddy had a tumor in his lower left leg. Doctors diagnosed him with Ewing's sarcoma, a type of bone cancer that is often found in children and young adults between the ages of 10 and 20. While somewhat rare — about one teenager in 50,000 is diagnosed with Ewing’s sarcoma mdash; it accounts for about 30 percent of bone cancers in children.
"We were told to go home, pack our bags for an indefinite stay at the hospital," recalls Alma. "Our lives completely changed at that moment."
The next day, Paddy was admitted to UCSF Benioff Children’s Hospital to receive treatment. They didn't know if Paddy was going to be gone weeks or months.
While filled with uncertainty about what lay ahead, Alma was immediately clear on the approach the family would take to being in the hospital, which she called, "The Game Plan." On the drive to the hospital, Alma told Paddy she would be with him every night. But while he was in the hospital, he had to be nice to everyone. She told him he could be angry with her, but not with the staff. And he had to be positive. He understood that right away.
Keeping a positive attitude came naturally to Paddy. Depending on where the tumor is located, some Ewing's sarcoma patients need to have bone removed. When Paddy heard this was a possibility, his response to the orthopedic surgeon was: "Can I keep the bone for show and tell?"
Dr. Steven Dubois, a pediatric cancer specialist at the Pediatric Cancer and Blood Disease Program at UCSF Benioff Children's Hospital, says he believes Paddy's tumor started from the bone and extended out into the soft tissues of his leg. Ewing's sarcoma can occur through the body, although the thigh bone and pelvis bone are the more common sites. And while it can spread to other areas, including the bone marrow, Paddy had localized Ewing sarcoma.
"We were concerned that surgery to remove the tumor would lead to significant nerve damage," says DuBois. "He therefore received radiation to treat the tumor."
The O'Brien's felt like they were in good hands at UCSF. "They helped us from the first foot in the door," says Alma. "We were all scared and undereducated about pediatric cancers. UCSF immediately made us feel welcomed and informed. They provided us with a "cancer playbook" so we could write our questions down."
Doctors and nurses encouraged them to write everything down so they would remember questions and take notes on all the new information they were learning. "They basically held our hands and lead us through the whole process," adds Alma.
Paddy received 14 cycles of chemotherapy. That meant missing the rest of fifth grade since hospital stays and the side effects the chemotherapy would take a toll on his body. Paddy's father, Mark, had just started a new business a week before Paddy's diagnosis. The family depended on Alma's medical insurance, so she needed to continue going to work.
Through careful scheduling — family, friends, friends of friends and moms from Paddy's school all volunteered to spend time with Paddy, at the hospital and at home, morning, mid-day and the afternoon.
"I didn't want to hire someone to watch him," says Alma. "I knew with confidence that the moms and other friends watching him would call me or take him to the hospital if he spiked a fever."
Some days, the sitter in charge would take Paddy to his school at recess, just to check in with his friends and be outside. On many nights, his best friend, Kevin, came over after soccer practice to sit with Paddy, and stay for dinner.
"Paddy's close friends didn’t freak out at all," says Alma. "Not when he lost his hair, or when he was so sick during chemotherapy. They'd just grab him the barf bucket. They could deal with it."
The way Paddy dealt with it was to maintain a good attitude. "Concentrate on the positive stuff and don't think about the bad things that could happen," he says.
He says getting to eat whatever he wanted — like doughnuts and gummy worms — was one of the best perks. And even on the hard days, he tried to focus on something positive that had happened, even if it was as simple as the peppermint candy that made his mouth taste better, or the blanket his older brother Barry had preheated for him in the dryer just before he got home from a hospital stay.
Before each trip to the hospital for chemotherapy sessions, Paddy brought dozens of homemade cookies for the hospital staff. "We felt like we could trust our team and our doctors," says Alma. "It's overwhelming at first. They started treating him immediately. But we were handed a binder with the full plan. It told us who to call and how to stay on track."
Paddy is now starting seventh grade. He completed his chemotherapy and Dr. Dubois says he is in remission. Paddy will have ongoing follow-up to make sure he continues to be in remission and to evaluate any late side effects of the treatment.
Paddy's leg bone is weaker because of the radiation, so he isn't playing soccer these days. But he is considering crew or maybe tennis. "After what I went through, nothing in my life seems hard," says Paddy. "I feel like I'm living the life of Riley."
Julie Beer is a freelance writer from Santa Rosa.