High-Spirited Girl Gains a New Shot at Life
Thursday, May 28, 2009
Taylor, now 12, is thankful for the day she gave her colon to "the dudes in blue."
Imagine spending 10 years in and out of hospitals with life-threatening conditions. At 12 years old, Taylor Randall has spent more time in hospitals than most people spend in a lifetime.
“I’ve learned a lot after 10 years of Taylor’s illness. For most of her life, she’s really been sick all year long with only a few months of good health,” explained Regina Randall, Taylor’s mom.
When Taylor was 3 and living in Florida, she was diagnosed with Crohn’s disease – a genetic autoimmune disease in which the immune system attacks the gastrointestinal tract, causing it to swell – and ulcerative colitis, a form of a long-term digestive disease that also inflames the colon. Crohn’s disease can manifest as colitis.
Taylor was prescribed steroids to deal Crohn’s and colitis. While the steroids reduced inflammation and suppressed Taylor’s immune system, they also had many negative side effects, including weight gain and frequent memory loss. Regina recalls that at 3 years old, Taylor needed a daily reminder of where her toothbrush was.
Despite a lifetime of unexpected hospitalizations due to flare-ups – spikes in Taylor’s symptoms that often sent her to a hospital – and prescription drugs that seriously impinged on Taylor’s life, Taylor and her mom maintained a rosy outlook as she grew.
“Parents don’t realize that when you’re stuck, you have to make the best of everything. The more upbeat and positive you are, the better,” Regina said. “It’s just common sense.”
Regina brought Taylor’s bedroom to her when Taylor was in any one of the various hospitals she grew to know over the years (including a hospital in Florida, Texas Children’s Hospital, Children’s Hospital of Philadelphia and Golisano Children’s Hospital at the University of Rochester Medical Center). Regina would draw smiley faces on the board and bring in familiar items like Taylor’s bedside lamp.
Even though Taylor and her mom tried to keep their spirits high, Taylor’s condition worsened over time. The Randalls eventually left Texas, where they had initially resided and sought care at Texas Children’s Hospital, and moved to Painted Post, near Corning, N.Y., so they could be closer to family and close to another highly regarded children’s hospital – Golisano Children’s Hospital.
When Taylor’s ankle shattered in day care after kicking a soccer ball in April 2007, questions were raised as to whether being steroid-dependent was helping Taylor or hurting her. Doctors at Golisano Children’s Hospital, including Natalie Sikka, M.D., a pediatric gastroenterologist, decided to use a new technology that has only recently become available: a capsule endoscopy, which involves swallowing a small pill that moves down the intestinal tract and captures images along the way.
This technology was pivotal in Taylor’s ultimate diagnoses, since neither an endoscopy, in which a long tube is inserted through the mouth and can go down as far as the top part of the small intestine, nor a colonoscopy, which goes up the other way and can only reach up where the small and large intestine meet, could provide doctors with a clear view of Taylor’s small intestine, Sikka explained.
Prior to this surgery, Taylor’s symptoms had waffled between being indicative of Crohn’s disease, which can occur anywhere between the mouth and the anus in the intestinal tract, and ulcerative colitis, which is confined to the colon, said Sikka. Once doctors could see that Taylor’s small intestine was normal through images from the capsule endoscopy, the doctors knew that Taylor’s colon was the only diseased part of her body. They determined that Taylor did not have Crohn’s disease; she only had ulcerative colitis.
Since ulcerative colitis is an isolated disease that only affects the colon, the doctors determined that Taylor a colectomy was the best option for Taylor. The surgery would remove Taylor’s colon – the section of her intestines that was causing her so much trouble.
Taylor was referred to Walter Pegoli, M.D., professor and chief of Pediatric Surgery at Golisano Children’s Hospital. In Oct. 2007, Pegoli performed a total colostomy to remove Taylor’s colon and a J-pouch ileoproctostomy – a surgical construction of an opening between the lowest part of the intestine and the rectum. After about three months of healing and using a colostomy bag, in January 2008, Taylor went in for a second surgery to take down the opening in the body and hook the two ends of Taylor’s small bowel back together.
Taylor did very well for awhile. Her bowel function had returned and she was recovering just fine, according to Pegoli. Taylor wrote an essay for a writing contest at the Corning Library about her experiences, which she humorously titled “The Day I Gave My Colon to the Dudes in Blue”: “We tried to have fun,” Taylor wrote, “like the time my mom made a tree out of construction paper and glued it to the ceiling over my bed. It was cool because it was fall outside, so as time went on the leaves fell on top of me just like they fall of the trees outside. My mom said I shouldn’t miss the leaves falling.”
Despite missing an average of 50 days of school a year for her medical complications, Taylor was named one of the six finalists out of 164 entrants in the writing contest. Later in the piece, Taylor adds that her mom and the nurses at Golisano Children’s Hospital loved to make things for Taylor to make her room feel more comfortable.
Just as Taylor was closing the book on her life as a frequent patient and was adapting to being a kid, in May 2008, something started going horribly wrong. Taylor began vomiting violently.
Regina was adamant about travelling 1 ½ hours to Golisano Children’s Hospital. Having had so many close calls with Taylor, she knew something was seriously wrong and she wanted Taylor cared for by top-notch pediatric specialists. Scar tissue has twisted around Taylor’s small bowel, making the top part look like a balloon and the bottom part look like a dime, as Regina describes it. Nothing could get through Taylor’s intestine.
If Regina had waited much longer, Taylor’s small bowel could have perforated and split and Taylor may have had to have her bowel cut out. This could have caused serious complications, since Taylor’s body was still healing from her earlier operations. Regina recalls the fear she felt, but she found some comfort in seeing that the operating room was crowded with health care professionals, all working hard to help Taylor, much like how Taylor’s surgeries had been.
Miraculously, the small bowel had not perforated and Pegoli was able to cut the scar tissue that was twisted around the small bowel, leaving the bowel intact. Pegoli said the operation was very delicate and serious. Regina recalls that despite the severity of this operation, Taylor was up and walking around just a day later. Taylor was eager to recover and get back to the normal life she was on her way to having.
Taylor felt very safe when she was recovering: she and her mother had come to see Golisano Children’s Hospital as a second home. The nurses at Golisano Children’s Hospital have always gone “above and beyond,” according to Regina. “The nursing staff gave us constant encouragement,” she said.
Regina remembers a special occasion in which Taylor’s nurses made an exception when Taylor was on NPO – a Latin abbreviation for “nothing by mouth” – and had been fed through a line for 17 days. The nurses came in with a big cake on Taylor’s birthday made out of Jello that spelled out Taylor’s name.
Taylor’s doctors at the children’s hospital were equally supportive in advisory roles. When Taylor’s fourth grade teacher was insensitive about her frequent medical absences, which Taylor of course had no control over, Regina turned to her doctors at the Golisano Children’s Hospital for help. Together, they decided that Taylor should be homeschooled for the year so she had more flexibility to recover.
Taylor has since switched schools and loves her new teacher and classmates. She is even active enough to have joined the lacrosse team, which Regina jokes that she reluctantly allowed after Pegoli and her doctors encouraged the physical activity. (Like any mother would be in Regina’s situation, she was excited Taylor was eager to get involved but a little bit nervous.) Taylor has since also gained a love of art, singing, is dabbling in theater, and aspires to be a fashion designer or a “large vet doc,” according to her mom.
After all Taylor has been through, she’s quite a “tough kid, who doesn’t like to complain,” said Pegoli, “When I first met her, she was demure, laid back, quiet and withdrawn. Now, she’s become an outgoing, interactive, normal adolescent.” Taylor’s optimistic attitude, supportive family, dedicated health care professionals and devoted mother have helped lead to Taylor’s miraculous and dramatic improvement. At 12 years old, Taylor finally gets the chance to be a kid.
Join Taylor and her family for Miracle Weekend
Taylor and her family will be at the 13th annual Stroll for Strong Kids and 5K Run, 9 a.m. to 1 p.m. Saturday, May 30, on the Wilson Quad at the University of Rochester. This year’s event is sponsored by M&T Bank. For more information or to sign up for the Stroll or the new 5K this year, please visit www.gchas.org.
The Randalls, along with four other special Miracle Kids and their families, will share their remarkable stories at the annual telethon on 10NBC, live from the Strong Memorial Hospital lobby, 10 a.m. to 1 p.m., and 7 to 11 p.m., Sunday, May 31. The telethon is sponsored by Perkins Restaurants. To make a pledge during the event, please dial (585) 241-KIDS or log on to www.gchas.org.