From The Waiting Game
Christine Larkin is pacing up and down the hallway near the MRI room. The door opens, and a nurse in scrubs appears behind a gurney carrying Christine's 13-year-old son, Paul. His eyes are shut. He's still asleep from the general anesthesia. "Hey, here we are," the nurse says cheerfully to Christine, who feels her nervous heartbeat slow slightly and follows them to the recovery room. For an hour and a half, Paul has lain motionless, strapped down inside a loud, narrow cylinder for an MRI scan of his head and spine. During his last checkup here at St. Jude Children's Research Hospital in Memphis, Paul was awake, but he panicked inside the machine. Now his doctors knock him out for the tests, which he returns for every three months.For his 48-year-old mom, that's not half as agonizing as the part that comes next -- waiting for the results. The MRI will show whether the brain tumor Paul had is back. Had. Christine and Paul talk about his cancer only in the past tense. That is very important to them, as there's a 30 percent chance of its returning before Paul starts high school next year. He is high risk -- cancer cells were also found in his spinal fluid -- and the chances of an aggressive tumor coming back are highest in the first two years. Test results could come in minutes but sometimes take longer. Last time, Christine had to wait a day for the doctor to call with the words she'd give anything to hear right now: "All clear."
"It's like you're this balloon filled with air, and when you hear that, it expels," she says, remembering the last checkup. "You become weak all over again and think, Okay, we have him for another three months. He's going to be around for the summer ..."
When your child is diagnosed with a brain tumor, your whole life becomes a waiting game. You wait to hear whether the surgeon got the whole tumor. You wait for your child to reach the two-year mark without recurrence, when the odds of survival improve significantly. But perhaps the most frustrating wait is the one that stretches for years, even decades. It's the wait to discover what the effects of powerful radiation and chemotherapy will mean to your child's mental and physical well-being.
For Christine and her family, the waiting began two years ago, when Paul started having mysterious episodes of nausea and vomiting. A golf-ball-size tumor was growing in the back of his head, preventing spinal fluid from draining and producing a feeling like motion sickness. After six months of ruling out the typical causes -- ear infections and sinusitis -- his pediatrician ordered a complete workup.
On a blue-sky Friday in April 2005, George Larkin, Paul's dad and Christine's ex-husband, picked up his middle son from a local baseball game to go for an MRI scan. Two days later, on the way to a Weight Watchers regional staff meeting, Christine got a call from the pediatrician. It was Sunday, and she knew the news couldn't be good. "They found a tumor," the pediatrician said.
Stunned, she walked into her meeting room, blurted out the news and then started sobbing. Her staff sent her home, but before she got in the car, she dialed George. "Oh, my God," he said. "Oh, my God." Over the next few weeks, Christine and George met with several surgeons. They finally scheduled surgery at Lucille Packard Children's Hospital at Stanford, two hours from their homes in Windsor, California.
Paul's cancer, called a medulloblastoma, was located in the back of his brain near the cerebellum and brain stem, which controls coordination and balance. The surgeon removed as much as possible without damaging healthy tissue. The next step was for Paul to recuperate at home for one month before starting radiation, followed by chemotherapy.
The Price They'll Pay for Treatment
George had no complaints with Stanford, but a whole year of chemo seemed grueling for his sports-loving son, a kid who just wanted to play ball and swim. So George, a pilot for Northwest Airlines, started researching treatment programs, including the one at St. Jude, which he'd learned about from television.He soon discovered that St. Jude was different from other cancer centers. There, the length of chemotherapy treatment is cut in half, yet the survival rate for medulloblastoma remains high: a 70 to 85 percent chance of survival over five years.
Cariann VanderWesten, seven, sits in a waiting-room chair next to her mom and dad, Matoka and Bill, clutching a baby doll and fiddling with a clear patch on her right arm. Hidden underneath her white T-shirt is a line taped to her chest, where chemo drugs are fed into a central vein. Her head is covered with a crocheted cap. She wears a face mask neatly fastened with a pink band. Cariann is waiting to get a shot that will boost her bone marrow production and stimulate her white blood cells, since they take a wallop after each chemo treatment.
She was diagnosed with a potentially aggressive brain tumor called choroid plexus carcinoma, one that affects less than five percent of young patients. After a surgeon removed the tumor, Cariann's parents were told their daughter had six to nine months to live. "I just wouldn't accept that, and I told him no," Matoka VanderWesten says. "I said, 'She will be fine, you will see. I will walk her back into your office.'" Matoka heard of St. Jude from family road trips growing up and knew this was where she wanted her daughter to be treated. Not only did it turn out that the doctor was wrong about the type of cancer the seven-year-old had, but her chances of survival are actually 65 percent over five years.
What's less clear for kids as young as Cariann is the price they'll pay for the treatment they receive. Children under eight have the highest risk for severe intellectual deficit from radiation, especially when the tumor has spread and the entire brain must be treated. That's why Amar Gajjar, MD, director of the neuro-oncology division and physician to both Paul and Cariann, is as focused on reducing his patients' side effects as he is on boosting cure rates. Radiation and chemo can carry a devastating host of side effects: cognitive changes, hearing problems, leg or arm weakness, even blindness and the inability to conceive children.
"In the emotional heat of the moment, parents say they'll accept their child whatever the result," Dr. Gajjar says. "But we've had some children who survived and had radiation at a very young age, and they've gone to statuses close to that of mental retardation." One of the ways he and the brain tumor program at St. Jude are protecting kids is by analyzing all the tumors of patients treated on a genetic level. Think of cancer cells as corrupted computer chips. The cause of the corruption in one child's cells might be different from that of another child with the same type of tumor. Understanding what makes each tumor tick helps doctors develop new and effective treatments with fewer side effects.
Luckily, Dr. Gajjar determined that Cariann, who gets A's and B's in school back home in Morganton, North Carolina, only required focal, or targeted, radiation to her tumor. Otherwise, she probably would have struggled to graduate from high school. The treatment has compromised her memory -- she forgets things she learned in school and all the Winnie the Pooh characters -- but once reminded, she's able to hold on to them again. "Right now, she seems like the same child she was," Matoka says. "But I do worry about how this will affect her down the road."
Aside from some leg and stomach pain and a few sad moments from missing her brothers back home, Cariann has a smile on her face most of the time. At night, before she crawls into bed at Target House, one of the free housing facilities on the hospital campus, she grabs her mom's hand, closes her eyes and prays: "Now I lay me down to sleep ... Please bless Mommy, Daddy, my brothers ... Thank you for healing me, and please let me be cancer free forever."
Lessons to Learn
Eighteen-year-old John Gradberg, a strapping six-foot-six with blue eyes and braces, sits next to his mother, Mickie, in an exam room. He has one more radiation treatment to go before they make the eight-hour drive back to Beckville, Texas. He'll get a month off before coming back to St. Jude for four months of chemo for the medulloblastoma that was diagnosed and removed shortly after he started college courses to become a math teacher.For one of John's checkups, Dr. Gajjar comes in and asks him and his mom if they've thought more about John's using a sperm bank. Since he was treated after puberty, it's almost certain the chemo will make him sterile. "You can ask my son, Dr. Gajjar; it's his decision," Mickie Gradberg says.
"I'm not gonna do it," John tells the doctor. "If it's meant to be, it's meant to be." Dr. Gajjar hopes he will reconsider once he goes home and talks to his dad, John, a Baptist pastor. Most of his other teen patients take this option. John would love his own kids someday but believes it's out of his hands. Right now he's focused on getting strong so he can work his way back to the level of basketball that helped his high school team win the district championship this year. He hopes to be a coach one day, but now, he struggles to make free throws.
Paul Larkin won't have to worry about sterility, and because he's an older child, even a drop in IQ probably won't affect his good grades at school. Much harder for the 13-year-old to grapple with is the loss of his hair, the result of lying completely still on his stomach underneath what looks like an upside-down blender while a radiation beam penetrated his skull five days a week for six weeks. Even though much of his hair has grown back, there's still a bald spot on the top of his head, where the beam was strongest. Paul wears a baseball hat everywhere he goes, including class. His hearing isn't as sharp as it was -- a result of the chemo -- but so far, he has no problem hearing his teachers or his dad telling him to "keep your head down" from across the green during their frequent golf outings.
Once a swift runner, Paul recently told Christine, "Mom, I'm not fast anymore." She just reminds him that the doctors say he's fine, and this reassurance is all he needs to go out and prove himself wrong. He continues to push himself on the running track and at the batting cage near home, and goes to a health club for cardio work. Not one to readily share his feelings, Paul admits he does feel more mature because of the cancer, but otherwise, he's nearly the same kid he was before. "I just want to forget about it."
George Larkin has stopped waiting for outcomes. Though he's always spent time with Paul and his brothers, Georgie, 15, and Ben, 11, now he makes every minute with them count, sharing activities like hiking and traveling to England and Ireland. "I realize I could lose my children very quickly, and I just live each day, trying not to let the what-ifs in," he says. "As a parent, that's all you can do."
On the way to see if Paul is ready for discharge, Christine spots Valerie Groben, Dr. Gajjar's nurse-practitioner. Some St. Jude parents are on the phone every five minutes asking for results, but Christine copes better by waiting for word to find her. No news is good news, she believes. This time, though, she can't wait. "Valerie, how's it going?" Christine says. "Do you have any word?"
"Well, I haven't gotten a page about Paul," Groben reassures her. "And the radiologist has already paged me two or three times to look at other scans, so let me poke my head in and see."
A minute later she's back: "The preliminary report is fine. All clear."
Relief floods Christine, and then life picks up and goes on. Back at the apartment, Paul chows down a meatball-and-provolone sandwich, then asks his mom if she wants to play basketball with him.
So one wait is over, but the next has already begun. For his checkup in January, Paul will get a spinal tap to check definitively for cancer cells in his spinal fluid. But at this moment, he is all smiles about the basket he just made at the court outside the apartment.
"I try to push it to the back of my mind, but it's always there," Christine says. "Yet Paul is not dwelling on anything. He's just living. That's part of the lesson I have to learn, to let that go and just enjoy those basketball moments with Paul."