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Tumor's 'kiss' brings hope into focus for one Newton family By
Sharalyn Hartwell The doctors call it pontine gliama, the name for tumors that cannot be examined closely enough to officially name. At first glance, Mary Bowen is a typical happy and bubbly 12-year-old girl -- typical because she loves school, loves pets, hardly ever sits still and adores her older sister; but, atypical because there is a tumor right in the middle of her brain stem. Despite the obvious challenges, Mary has adopted an it's-no-big-deal attitude and says "La da-da-da-da," to her experiences, in a sing-song voice with a shrug. It started when Mary's mom, Lisa Udy, noticed Mary had a lazy eye last December. Three weeks later in January, Mary started complaining it was hard to hold her pencil at school. "My mom just thought I didn't want to do my homework," said a giggling Mary. After Mary called her mother at work from school, two mornings in row, because she had a headache and felt like she was going to faint, Udy started to worry. "I thought, this is not Mary. She doesn't get headaches like that," Udy said. The next morning Mary went to the doctor and noticed her right leg felt like it was longer than her left. After visiting with the doctor and having a MRI test, they went home with a list of ailments and still not knowing what was wrong. Then at 9 o'clock that night, Mary's doctor and physician's assistant came to their house, MRI scans in hand. "Of course when he came, I knew something was up," Udy said. "Doctors just don't make house calls anymore." "I didn't know what a tumor was," Mary said. "But I could tell it wasn't good from how my mom reacted. I couldn't ask questions, I was crying." Mary learned all about her tumor the next day when her mom and stepfather, Bart Udy, took her to Salt Lake City. At the University of Utah Hospital she consulted with brain surgeons and pediatric oncologists. She learned she was not alone. Each year more than 17,000 people in the United States discover they have a brain tumor, according to the National Cancer Institute's website. Brain tumors are found primarily in children, Udy said, and are usually detected between the ages of 5 and 12. Although the NCI website said surgery was the most common way to treat brain tumors, in Mary's case any attempt to remove the tumor would be impossible, as it was right in the center of her nervous system. Radiation would be the best option. "If they went in, she wouldn't ever wake up," Udy said. While describing the radiation treatment she started that day, Mary hurries to get pictures and Udy gets Mary's radiation mask. Mary willingly puts on her mask, an umpire-like contraption, woven specifically to mold to her cherubic face. It extended beyond her head to attach to the table she laid on during radiation treatment, keeping her from moving even the tiniest bit, which was critical to treat the same area each time. Now, after 31 days of lying on a table in a room all alone, as a giant telephone receiver-shaped machine rotated around her, the sides of the white radiation mask look like a map. Progressive treatments helped narrow the field to concentrate the rays, marked by masking tape and colored lines. Another MRI taken after the radiation treatment revealed the tumor had not grown, but two months later Mary started having headaches again. The tumor had started to grow. This time, oral chemotherapy was the treatment plan. Mary said she faithfully swallowed the "huge" brown chemotherapy pills, which are larger than an average calcium pill and are stored in a Ziploc bag in the refrigerator, for 28 days. A third MRI showed the tumor had stopped growing. Then she took a different type of oral chemotherapy for seven days, and in August they found the tumor had shrunk a small amount. This was also the first time a doctor actually said the tumor was cancerous. Mary does not act like she has a life-threatening illness. She constantly cracks jokes and flashes her captivating smile, revealing the dimple in her right cheek. In the few fleeting moments Mary actually stays stationary she is usually wrapped up in a blanket, but before long she tosses the blanket aside and is up and going. It is only then the toll of Mary's illness becomes obvious: her walk is slow, labored and shadowed by a heavy limp. Udy explains as Mary moves to let the pet dogs inside. Pointing to the brim of her nose, Udy says, "from here up," the left side of the brain controls the left side of the body, but from "here down," the left side of the brain controls the right side of the body. The right side of Mary's body is now very weak, much like someone who has had a stroke. But she has learned to compensate. She turns her head to the left as she talks, so her right eye can focus clearly. She taught herself how to write left-handed and the left side of her body has become much stronger. But now she gets tension headaches from straining her eyes and constantly twisting her neck. She also cannot ride her bicycle or scooter anymore because she cannot balance on them. Mary can walk short distances but has a wheelchair for long distances. She prefers to drive a golf cart, one-handed, especially to go visit her friends. She even drives the motorized carts in stores one-handed. "I like the one at Shopko best," Mary said, with a twinkle in her eyes. "It goes fast." She remains very independent and gets mad at her mom when she tries to do too much for her. "It's hard, sometimes I feel mean," Udy said. "But she thrives on independence. I think that is what keeps her going." Mary took steroids for about eight months; they made her gain weight and made her cheeks puffy and chipmunk-like, although the splash of freckles across her cheeks and nose draw attention away from that. "My face looks like pumpkin," Mary says with a laugh. Then proudly she exclaims, "Guess what? I gained 40 pounds and I just lost seven!" Through the chemotherapy Mary battled nausea and a faltering appetite. She lost almost all of her long, dark-blonde hair. She keeps the little bit she still has pulled back in a ponytail, which is about as big around as a pencil. She experiments with her look using three different hair pieces, one full wig and lots of bandanas. "See, this one is really long," Mary said as she displayed one of her curly, blonde hairpieces on a clip. Then flipping the clip upside down, "Now see, it's lots shorter." Stray hairpieces and bandanas in the living room are just a few indicators of how life has changed in the modest, white frame Udy home in Newton. A roll-away bed stowed in Udy's bedroom, an alarm clock in the living room and a clothes rack and bureau in the corner of the dining room are subtle reminders. Mary's bedroom had been upstairs, but now she sleeps on a roll-away bed in the living room and gazes often at the pictures on the wall of the family in Walt Disney World, a vacation made possible through the Make A Wish Foundation, an organization that grants wishes to children with life-threatening illnesses. The "medicine bucket," a small, silver pail with an American flag on the front, brimming over with medicine bottles of all shapes and sizes, is placed carefully in a prevalent spot on the kitchen counter. Even though Mary thinks the bucket is pretty, it is an ominous reminder of what she has been battling the past 10 months. "We had to make a lot of alterations in our lives," Udy said. "They are small things that made a huge difference in accommodating Mary." But none of that fazes Mary in the slightest. "I'm gonna be like my dog," she announced. The dog had limped on a sore leg, but now was "all better." The costs of helping Mary get "all better" are constantly mounting. A five-day dose of chemotherapy is around $1,500. Nausea medicine is over $500. Each visit to the radiation oncologist is $500. But the Cache Valley community has tried to help. Gossner's Foods held a benefit concert for Mary this summer and the mother of one of Mary's friends, Jeanette Hooley, headed up a committee to plan a community barbeque to benefit Mary. Even though there were only two people at the first meeting, the idea spread like wildfire: over 30 people came to the final meeting and over 300 people came to the barbeque held at Newton Park Sept. 7. After ticket sales, a baked goods sale and an auction of donated items, $13,793.70 was raised for Mary and her family to help pay for medical expenses. "It was just amazing," Hooley said. "The whole community pulled together to help Lisa and Bart and to show how much they care for Mary." "Everyone has been so wonderful to help," Udy said. "I just don't know how to get the thank you out to everyone. You can only say thank you in so many ways." Mary's family thanks her for making them look at life a little differently. "The little things in life are not worth fussing over," Udy said. "We look at people differently and try not to judge right off the bat. You just can't judge people from what you see." Most importantly, the family has gotten closer, Udy said. Mary does not fight with her big sister, Jennifer, 15, as much as she used to and claims Jennifer is her hero. "It's really sad these things have to happen in your family to make you realize how important your family is," Udy said. Udy has always been very close to all of her children -- Justin, 16, Jennifer and Mary -- but there's an obvious mutual respect, love and admiration between this mom and daughter. "She's a trooper, the bravest girl I have ever known," Udy said. "She's so high-spirited, happy and has a great personality. She's a beautiful little girl." "I just take after my mom," Mary said. Both mom and daughter tackle each new day with energy and vigor to try to "be grateful for what we have. "She just loves life," Udy said. "Who, me?" Mary asks innocently, then adds with a shrug and a giggle, "Yeah, I do." "There are no guarantees," Udy said. "We are hopeful. We live on life and try to be as positive as we can be. We constantly plan for tomorrow and cherish each day we have." Mary plans to cherish many more. With an emphatic nod of her head, she says, "I'm livin' for a long time."
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