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Where would two physicians turn if their son had a brain tumor?One couple found world-class treatment—as well as their son’s trademark smile—at St. Jude.
Six-year-old Evan Pertile has a bright, cheerful countenance that usually shines through in his family’s holiday photos. But something wasn’t right as he, his parents and three brothers posed on Thanksgiving Day 2008 for the annual snapshot.
“I don’t think Evan smiled once,” says his mother, Rachel. “He just wasn’t feeling well.”
The day before, Evan had awakened with an unusual headache that concerned Rachel and her husband, Alex, who are both physicians. After the headache subsided, the couple agreed that if it returned, Evan would go to the hospital for an imaging scan.
On Thanksgiving night, the family drove to their vacation home to relax and spend a long, holiday weekend. When Evan awoke the next morning crying, Alex immediately took him to the emergency room. Hospital staff there said Evan had a bad sinus infection. Unconvinced, Alex demanded that the ER physician perform a CT scan.
Since it was a holiday weekend and no one was available to interpret the results, Alex, a radiologist, read the scan, which confirmed his suspicions—a 4-centimeter tumor was lodged in Evan’s cerebellum.
“It was a shocking moment, but being a father helped me pull together,” Alex says. “It crossed my mind that I have to be the strong one and take him through this.”
After a moment of consolation with his son, Alex left the hospital to pick up Rachel and his other sons, William, Jonathan and Xander, while Evan waited in a patient room.
It was the beginning of a journey that would lead the family to the world-renowned pediatric brain tumor program at St. Jude Children’s Research Hospital.
Alex refused to answer the phone on the drive home, even though Rachel called numerous times. He wanted to inform her face to face. Rachel had already assumed the worst.
“I called my sister, and I said, ‘Rebecca, Evan has a brain tumor. I just know. It’s the second severe headache he’s had, and it’s atypical,’” Rachel says.
As Alex backed their vehicle into the driveway, Rachel knew something was wrong. When Alex got out of the car without Evan, it was confirmed.
“I said, ‘We need to pack; we need to take Evan to a major center,’” Alex recalls.
Evan was found to have medulloblastoma, the most common malignant brain tumor in children. Two days later, a neurosurgeon removed the tumor from Evan’s brain. Specialists said the tumor’s pathology revealed a rare form of the tumor, which St. Jude physicians later determined was inaccurate. The couple asked their pediatric oncologist to recommend the best place for Evan to undergo therapy. The answer was St. Jude.
“It was not even a moment’s hesitation. As soon as she said ‘St. Jude,’ we said, ‘That’s where we are going,’” Rachel says.
Alex and Rachel were familiar with St. Jude. They had donated money in the past and had seen the hospital’s TV and print advertisements. Alex recalled taking note of one magazine advertisement in which a St. Jude patient with a brain tumor was featured.
“I thought that was a unique ad, and then a week later, Evan had a brain tumor,” Alex says. “I remember being in the waiting room during his first surgery, and I kept running into that ad over and over again in different magazines.”
Although the Pertiles knew about the remarkable work occurring at St. Jude, they were surprised to find that important issues such as travel, lodging, food and mental well-being are also handled. Rachel was relieved to know St. Jude had staff to take care of these matters and to make the first day at the hospital less stressful.
“The security guard at the front desk held my hand and helped us. She was so welcoming. I felt a little calmer, and I knew we had done the right thing,” Rachel says. “I was overwhelmed with the organization and the care. Every single person is there for the children.”
After a second brain surgery to remove additional tumor cells, Evan began the other components of treatment, which include radiation therapy to his head and spine and four rounds of chemotherapy. The day after his second surgery, Evan was back to his cheerful self, running around the hospital.
Before beginning six weeks of radiation therapy, Evan’s stem cells were removed in a process known as an autologous blood stem cell harvest. After each round of chemotherapy, he receives a transfusion of these cells to boost his weakened immune system.
“We try to minimize the volume of high-dose radiation to the tumor bed to avoid the long-term, late side effects,” says Amar Gajjar, MD, who heads the St. Jude Neuro-Oncology Division.
Traditional therapy usually involves one year of chemotherapy for patients, but the St. Jude protocol calls for a reduction in the duration of treatment, and instead delivers the chemotherapy in monthly cycles of high-dose chemotherapy for four months total duration.
“We cut short the intensive chemotherapy, which gets very good results and gets the children back into a normal routine more quickly and with much less toxicity,” Gajjar says.
After his first round of chemotherapy, Evan surprised his caretakers with his rapidly improving white blood cell counts and a voracious appetite that suddenly reappeared. Evan credits his renewed appetite to the encouragement from his new friends in the armed forces, who tell him to eat so he can become a strong soldier someday.
Shortly after Evan’s first radiation treatment, Rachel met a woman on a plane who worked at the Fort Leavenworth military base in Kansas. After hearing Evan’s story, the woman spread the word to her colleagues. In the weeks and months since, military personnel from all branches in different parts of the world have sent messages of goodwill to Evan. He has received countless e-mails, visits, military gear, a soldier’s bronze star, a bronze star with valor, a purple heart and other combat medals. He was also told that he will receive an American flag that flew on the Fourth of July in Iraq.
With a boost in appetite and morale, Evan recently began his second round of chemotherapy and is looking at a good prognosis, according to Gajjar. The Pertiles have seen the smile return to Evan’s face now in photographs, and they credit St. Jude with helping make that possible.
“My wife and I are both in the medicine business, right in the middle of it. Even with that, it is very hard to navigate the system,” Alex says. “The fact that St. Jude has everything there and just takes the child and the family and guides them through all of this is just amazing. All of a sudden, you feel like you are in absolutely the best place in the world.”
Reprinted from Promise Summer 2009
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