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Research
With help from St. Jude, Michael Miller transcends obstacles in his way.
At first glance, Michael Miller’s bedroom resembles the lair of a typical teenager. Rumpled T-shirts and ragged jeans have been strewn across furniture and floor. Posters, skateboard decks and castoff guitars float on sky-blue walls. But closer examination reveals creativity blooming amid the chaos. Items mounted on the walls are arranged with a certain artistic flair. The presence of well-used musical instruments, loop pedal and amplifiers attest to the fact that, for Michael, art is serious business.
With his subtle, half-smile, quiet voice and serene eyes, the teen seems an unlikely rocker. But for hours each evening, he hunches over his guitar. One moment, his fingers fly across the frets with feverish intensity; the next, they caress the instrument slowly and deliberately. When he’s not practicing, Michael hurtles down sidewalks and streets on his skateboard, wheels clattering across the seams like a locomotive chugging along a track. If he encounters an obstacle—a ledge, a set of stairs, a flat, open space—he flings his arms out for balance, twirling, leaping and launching himself toward the heavens.
“Skating’s a pastime, but music is my passion,” Michael says. During the past two years, these activities, along with a deep faith and extraordinary medical care, have helped him rise above even the most daunting challenges.
In July of 2007, Michael was perplexed and annoyed when, 10 days after his 16th birthday, he began exhibiting signs of a serious stomach virus. After a couple of days, Kimberly and David Miller took their son to the doctor, who discovered a large lump in Michael’s abdomen. “You need to take your child to the emergency room,” he told the Millers.
During the whirlwind that followed, Michael underwent an operation to remove what doctors believed to be the primary tumor. Afterward, the local hospital sent the teen home to recuperate. Minute by minute, hour by hour, Michael’s condition worsened. “I was so scared,” Kimberly says. “He was throwing up all the time. He couldn’t stand or walk. I thought it was the end. We didn’t know whether he would still be with us from one day to the next. When it would get too bad, we would take him to the ER, where they would give him fluids and send him back home. There was a hopelessness that came over us during that time.”
Kimberly and David found support and strength from the most unlikely place—their own son.
“At first it was pretty freaky, and I was scared,” Michael admits. “But the night after my surgery I prayed all night long. After that, I knew everything was going to be all right.” Then he calmed his parents’ fears and helped them focus on the task ahead.
“God’s going to see me through this; I’m not going to worry about it,” Michael told them. “Now, where’s the best place we should go?”
For years, the Millers had heard about St. Jude Children’s Research Hospital through television and word of mouth. They asked their physician for a referral. By the time they arrived in Memphis, Michael was extremely sick. “If we had not gotten to St. Jude when we did, Michael would most likely not be with us today,” Kimberly says.
Physicians quickly determined that Michael had stage IV rhabdomyosarcoma, an aggressive, soft-tissue tumor that accounts for 7 to 8 percent of childhood cancer cases.
Michael’s situation was so precarious that clinicians had to stabilize his condition before treatment could begin. “Michael was very ill,” recalls Sara Federico, MD, Oncology fellow. “On the scans, the tumors looked like rain on a windshield. His abdomen had large masses, which were conglomerations of multiple lymph nodes. His bone marrow was packed with disease, and he had multiple lesions in his lungs, and bone. Simply stated, Michael was critically ill on arrival to St. Jude.”
According to Wayne Furman, MD, interim director of the Solid Tumor Division, the cancer actually caused a fracture in Michael’s vertebra. “The bone was weakened so much by the tumor that it compressed,” he explains.
Clinicians enrolled Michael in a protocol for high-risk rhabdomyosarcoma. Furman says the treatment plan entails intensive chemotherapy with six drugs for 51 weeks, plus radiation and surgery. The study incorporates a combination of drugs that St. Jude molecular pharmacologists had previously shown to be highly effective against the disease.
Almost immediately, Michael’s condition improved. “He had a remarkable response,” Federico says. “His disease truly just melted away.”
The treatment took its toll on the teenager, who became super-sensitive to scents. “To me, the radiation smelled like iodine,” he says. “People would come to Ronald McDonald House and serve these amazing meals. But when I’d get near the kitchen, I’d smell the food and I’d turn and run for my room.”
As a result, the 5-foot, 9-inch teen’s weight dropped to 110 lbs. Michael credits John Franklin, RN, with helping him gain weight. “When I was in the hospital, John would come into my room and tell me what looked good in the cafeteria that day. Or he would get me takeout if the nurses were ordering,” Michael says.
Like many teens, Michael was tethered to his cell phone, fingers constantly tapping out text messages to friends. His mom laughs that he could text during medical procedures or even in his sleep. “One time, Michael was actually sedated and they were about to put the needle into his spine when he tried to reach for his cell phone,” she says.
Occasionally, Michael would slip away from the watchful eye of clinicians, grab his skateboard and practice ollies, grinds and kickflips. For just a while, he would be a carefree teenager once again.
“He didn’t tell me about that until after he finished therapy,” says Federico with a rueful laugh. “It used to make me nervous when he would go home for visits, because I suspected that he was skateboarding.”
In spite of her fears about his activities, Federico learned to respect the teen for his maturity and positive attitude. “Michael was a joy to take care of,” she says. “He was well aware of everything he was missing at home. He couldn’t play in his band or hang with his friends. But he went through everything with a smile. I never heard him complain about chemo or radiation therapy. I never heard him complain about the fact that he was throwing up. He never complained. Ever. He acted like treatment was a piece of cake, when it wasn’t at all.”
Gradually, Michael’s strength improved and the tumors disappeared one by one—even the softball-sized mass in his abdomen. The lesions in his lungs were the last to go. Today, his disease is in remission.
David and Kimberly say they are grateful for the kindness they were shown at St. Jude. “I don’t care where you go at that hospital, they make you feel at home and they treat you like family,” Kimberly says. “We’ve never received a single bill for his treatment. They took all that worry from us. We already had so many things running through our heads, but St. Jude did everything they could to make it easier for us. The shuttle would meet us at the airport; we were given meal cards; we were given a place to stay. Everything was done for us, so that we could concentrate on helping Michael get better.
“We’ve been really blessed, and we know it,” she continues. “We don’t take that for granted.”
Hospital staff recently asked Federico why Michael’s hands, feet and calves were glowing on a routine PET scan. “The scans can light up in places where you have disease,” Federico explains, “but they can also light up in places where there’s a lot of activity. You can literally look on Michael’s PET scans and know that he does a lot of skateboarding and guitar playing.”
A self-taught musician, Michael played in several rock and Christian rock bands before his diagnosis. The quiet, self-effacing teen says that he loves to perform in front of crowds. “Sometimes I get a little nervous,” he admits, “but the experience pushes you to grow.” He also enjoys teaching music and hopes to pursue that as a career. His mom wants him to enroll in a music program in a Texas college; he has his hopes pinned on one in Boston, Massachusetts. Wherever he lands, Michael plans to augment his current skills in guitar, bass and percussion with training in violin and piano. “It’s really exciting,” Kimberly says. “It’s just going to be phenomenal to see what he can do when he gets to college.”
In July, Michael turned 18 and, like many teens and most musicians, opted to get a tattoo. But, like everything else he does, this one was artistic and profound. “I decided to get a cross with wings behind it,” he says. “It symbolizes how faith can carry you through everything.”
Facts about rhabdomyosarcoma
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Reprinted from Promise August 2009
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