By Mary Brolley, Staff Writer
Two years after his son Jake's grueling but successful treatment for childhood cancer, powerful feelings are still close to the surface for Joe C. of McLean, Va.
Chief among them: shock, fear, gratitude and relief.
Just after Jake's third birthday in early 2008, the little boy was diagnosed with rhabdomyosarcoma, a soft tissue cancer in children.
Tests revealed that the tumor was attached to his bladder, which explained why urination had become so difficult for him.
The tumor's size and location -- and Jake's age -- made choosing an effective course of treatment especially complicated.
Composed of cells that normally develop into skeletal muscles, rhabdomyosarcomas occur most often in children and teens. They represent about 3% of all childhood cancers, and approximately 350 new cases of rhabdomyosarcoma occur each year in the United States.
Proton therapy offers 'remarkable chance'
After consulting with experts at a local hospital in Virginia and getting a second opinion from another team at Johns Hopkins Hospital in Baltimore, Md., Joe and his wife Amy elected to augment Jake's chemotherapy treatment with an emerging, though lesser-known, form of radiation called proton beam therapy.
Because their bodies are still developing, children may have more serious long-term side effects from radiation treatment -- intellectual impairment, decreased bone and soft tissue growth, hormonal deficiencies and the development of second tumors.
But with its capability to precisely deliver high doses of radiation to the tumor with little damage to surrounding normal tissue, proton beam therapy is increasingly being used to treat cancer in pediatric patients.
Joe and Amy were convinced that chemotherapy and proton therapy offered the best chance to cure this difficult cancer, whose location near Jake's developing organs made its removal tricky and dangerous.
"Our radiation oncologist at Johns Hopkins felt that the combination of chemotherapy and proton therapy offered Jake 'a remarkable chance' of eliminating the tumor," he recalls.
But where to go for this therapy?
"He told us proton beam therapy is available in just five places in the country (at the time). And due to its wealth of experience in treating children, he recommended MD Anderson," he says.
The couple met a number of physicians and medical professionals who would become their partners in returning Jake to health. Among them was Anita Mahajan, M.D., associate professor in MD Anderson's Department of Radiation Oncology. Because of her expertise in treating pediatric tumors, she led Jake's care team.
Cancer treatment for a young child requires special accommodations. This is especially true for proton therapy, whose precision is the key to its success in killing cancerous tissue while sparing healthy tissue. Children have a harder time holding still, so those under age 8 require sedation before treatment.
Mahajan and Vivian Porche, M.D., professor in the Department of Anesthesiology and Perioperative Medicine, were determined to make it as easy and interactive as possible for Jake.
Porche taught him how to "put himself to sleep" for the treatments, allowing him to push the button that started the anesthesia. Then she and nurse anesthetist Cynthia Williams sang him lullabies until he fell asleep.
Joe, who usually accompanied Jake to his proton treatments because his wife was home in Virginia with their younger child, still gets choked up when he remembers Porche's promise to him: "I'm your baby's mama when your baby's mama isn't here."
During their five weeks in Houston, the family stayed in the Ronald McDonald House. This made it easy when Amy and baby Lucy visited Joe and Jake every weekend. "We were treated like royalty," he says.
A healthy, happy 5-year-old
Two years later, Jake is a healthy, happy 5-year-old. Of all his father's memories about the months of Jake's treatment, two stand out.
Once, after a day when Jake's chemotherapy caused him to vomit repeatedly, 3-year-old Jake looked thoughtfully at his mom as she tucked him in for a nap, and asked, "Mommy, are you proud of me?"
In the other, young Jake responded defiantly to an older child who teased him about having lost his hair. "Jake reached up and touched his remaining hair and said, 'I have hair!' Joe recalls. "The kid said he didn't, and Jake said, 'Yes, I do!.' Eventually, he wore the kid down, and he walked away.
"He's just a tough little kid -- as are all these kids."
Q&A: Proton Therapy for Pediatric Patients
MD Anderson resources:
Children's Cancer Hospital at MD Anderson
MD Anderson Proton therapy center
Anita Mahajan, M.D.
Vivian Porsche, M.D.
The National Association for Proton Therapy
Pediatric Patient Benefits From Proton Therapy
By Mary Brolley, Staff Writer
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