Ala., boy makes progress after brain tumor

By By DREW TAYLOR

AUBURN, Ala. (AP) — For Kevin Kennedy, every step is as exciting as a jump.

Kevin, 8, has lived with posterior fossa syndrome since 2010, which has radically changed the way he walks, talks and moves. After initially being diagnosed, the boy who at one time played soccer and ran in the backyard of his home was brought down to barely being able to move or talk. In the three years since, those close to Kevin are astounded by the progress he has made in getting back to normal.

Kennedy's older sister, Kylie, remembers how the family was in a movie theater in May 2010 and how Kevin could not control his balance and was feeling sick. Kylie, who was 8 years old at the time, then remembers how weeks later she would find out that her brother had a tumor in his brain.

"I felt like it was kind of my fault," Kylie said. "I just didn't know what to think because I was 8, so I really didn't know what to do."

Jennifer, who was working as a neurological nurse at Baptist Medical Center South in Montgomery and was 8 months pregnant at the time with Kevin's little brother, Quinn, remembered fearing for the worst that her son might have a tumor, which would match the criteria for his symptoms. After discovering that Kevin had a tumor pressing against the cerebellum of his brain, Jennifer took Kevin to Children's Hospital in Birmingham to remove the tumor in June 2010. Jennifer said she remembers how after the surgery, Kevin had a temperature of more than 100 degrees and that his left lung had collapsed, forcing him to be put on a feeding tube for a time.

"You don't live through that," Jennifer said. "When you're an adult and you don't wake up, you don't live through that."

Kevin's father, Dan, said he didn't know what to think as it was happening, but listened to doctors who said that the posterior fossa syndrome, which had been discovered after the removal of the tumor, was not expected to last long.

"To me, that meant there were things we would have to do, but it wouldn't be that bad," Dan said.

According to Dr. Gregory Friedman, pediatric neurooncologist at Children's Hospital in Birmingham, posterior fossa syndrome affects the cerebellum and brain stem and can include symptoms of mutism, difficulty walking and emotional distress. What causes the syndrome is still a mystery to scientists.

"There's still more research that needs to be done to figure out exactly what causes it," Friedman said.

Friedman, who first treated Kevin when the tumor was discovered, said that roughly 10 percent to 25 percent of children who have tumors removed from their posterior cranial fossas will have the syndrome, but that it usually leaves within days or weeks. Severe cases can sometimes last months.

"Most children will not have it and those that get it typically will just last a short period of time," Friedman said. "So his case was unusual and was the most severe case we've seen here at UAB."

For Jennifer, her main concern has always been finding people to help Kevin get to where he needs to go in his recovery.

"Finding someone to believe in Kevin and to work with him and to get him to the next level has been especially challenging because his pathology doesn't meet what we have," Jennifer said. "When you look at an MRI and there's no brain damage, you don't expect them not to move their limbs."

After the surgery, Kevin spent two months at Children's Hospital going through rehabilitation.

"He couldn't eat, he couldn't move and he couldn't walk," Friedman said. "He basically had to relearn all the basics, and that's not something we would expect to occur from his surgery."

Dr. Lisa Corsa of Premier Therapy Solutions in Boca Raton, Fla., first came into the picture when Kennedy approached her around Thanksgiving. At the time, Kevin's condition was very bad and, as Corsa put it, was comparable to that of an infant in that he had little core strength.

"I know she (Jennifer) had just given birth to a child and the third child was 3 months old at the time," Corsa said. "I recall them both doing very similar things."

Corsa said that at the time, Jennifer was very distraught over her son's condition and that few doctors were offering any substantial hope that he would get better.

"I gave her glimmer of hope and told her 'Don't listen to anyone. He's not going to stay as a 3-month-old baby. We are going to get this boy to walk again,'" Corsa said.

"I looked her directly in the eye and said that."

Corsa said the difficult part of the process was Kevin's family staying in Florida for months on end as she and Kevin worked together in therapy. In the first few weeks, they would hold sessions lasting a couple of hours a day. It was in these sessions that she could see Kevin begin to change.

"He was making changes every single week, so that was really amazing," Corsa said.

One notable instance of Kevin's change Corsa remembered was how she walked out of the therapy room for a moment and returned to find Kevin sitting upright, watching TV.

"I was amazed that we had finally built up enough core strength that he could sit up alone without falling over," Corsa said. "I had tears in my eyes from all the hard work that we had done and to see him making his first milestone."

Corsa still stays in contact with the family. Aside from the family traveling to Florida a couple of times a year for evaluations, Corsa also deals with Kevin's therapists and has visited his school to give instruction on how to best help him.

"I spent a couple of days at his school with the teachers and therapists and students to help Kevin get the most therapy that he could, even at school, so that they were all on the same page and the same program of getting him better," Corsa said.

Corsa said that like any neurological condition, there are good days and bad days, but that Kevin is on the right track toward recovery.

"I really do believe that with continuous therapy and determination that Kevin is going to be integrated back into his normal life again," Corsa said.

Kevin eventually moved back home to Auburn, where he undergoes physical therapy three times a week. Patrick Russell, a personal trainer at HealthPlus Fitness Center in Auburn, said Kevin's drive and motivation have led to walking with little to no assistance and moving his limbs significantly better than two years earlier.

"We can only do so much," Russell said. "If Kevin didn't want to do it and stay motivated, I don't think we would be where we are now."

Kevin said the work is hard, but he keeps trying so he'll be able to walk again.

"I just stick with it and keep trying my best," Kevin said. "I keep going and always go forward."

Some of the hardest work Kevin went through was in re-entering school, which was recommended by Corsa as essential to his therapy. Because of his condition and the time he missed while working in Florida, Kevin was placed back into second grade at Richland Elementary School in Auburn in order to catch up with his studies.

Vishaka Uluwita, a resource teacher at Richland, has been working with Kevin during the school year and described him as being a great joy to work with and always motivated to learn.

"Some days are better than others, but other than that, he really is an inspiration to all of us," Uluwita said.

In her class, Kevin has progressed with other children in various disciplines, such as reading and math. Uluwita said he has come a long way since the start of the school year and has made real academic gains.

"He's really put forth the effort," Uluwita said. "A teacher can teach something all the time, but sometimes it takes the student to take initiative and he truly has shown that initiative this year."

Ashley Wood, Kevin's second-grade teacher, said he is very excited to participate in school and often likes answering questions and working with other students. Wood also described him as very independent and usually doesn't need help from others.

"He's just very determined and independent in wanting to show progress, so I have seen a lot of progress from him this year," Wood said.

In addition, Wood said other students are very encouraging to him and congratulate him on when he is able to do things better than before, like at play during recess and doing physical activities.

"His peers accept him and don't treat any different than anyone else," Wood said. "It's a very well-respected environment that they all understand exactly that he is just as smart as everyone else."

Kevin said math is his favorite subject and feels very comfortable with it.

"I'm good at it and I really can do hard math," Kevin said.

Wood said Kevin shows great enthusiasm when learning math in class.

"He loves learning new things in math," Wood said. "You can show him something one or two times and he's ready to pick it up and do it independently."

On April 18, Kevin slipped from the monkey bars at school and broke his arm. For a moment, it seemed that the boy who had been making the most significant progress since his diagnosis had suffered a setback.

However, Jennifer said the accident has shown how driven and independent Kevin is, explaining how he can't resort to crawling when walking becomes difficult and is forced to lift his arms more than in the past.

"It's a setback and a delay, but in another way, it's just an opportunity to look back at how far we've come and how he's still going to make it," Jennifer said. "I can see him being independent and I can see him being driven and focused and how he's healing."

Jennifer said Kevin is still on a journey toward recovery.

"Another thing with neurological progression is that it's five steps forward and three steps back," she said. "It's peaks and valleys. It's not continual."

Dan said that with all the improvement Kevin has made, he still has a long way to go, but that every day has shown real opportunity to live a full life.

"Even if he stopped now, he can have a life for the rest of his life," Dan said. "However, he's still not where everyone else is."

Dan said Kevin's progress is something he and the family are proud of and share in together.

"There's a lot he can't do, but he's come so far that you don't stop believing," Dan said. "You don't stop believing that he can get better."

Kylie said that after her brother's diagnosis, she could feel that their relationship was about to change for the better. Before, they would argue all the time with one another. Now, there was room for new beginnings because she would be there to help him every step of the way.

"It felt kind of like a restart button with me and Kevin," Kylie said.

After everything he's been through, Kevin said he will keep trying to get back to being normal again.

"I've just been working so hard.and I'm getting better," Kevin said.

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