Family meets challenges following devastating diagnosis
AKRON – An 11-year-old from East Liverpool with an interest in medicine has recently found himself spending a great deal of time in the company doctors, nurses, surgeons and therapists – but for the most unfortunate reasons.
Following a series of recent surguries to address tumor growth in his spinal column, Micah Beckwith has spent nearly all of the last seven weeks at Akron Children’s Hospital in Akron. He has been paralyzed from the chest down since the last operation in August and is now undergoing chemotherapy and physical rehabilitation.
According to his mother, Miranda Keith, Micah was an active, fun-loving boy who loved to ride his bike and swim, with no apparent health problems until the fall of 2011, when she first noticed an imbalance in Micah’s back. “When he sat down, his one shoulder drooped lower than the other, and his spine looked a little funny to me,” she said via phone from the hospital.
It was a classic symptom of scoliosis, a curvature of the spinal column. Keith says the disorder runs in her family, which made her fear that Micah was showing signs of it developing in him. The family doctor examined Micah and recommended they see a specialist in Akron. In December of that year, the family received a diagnosis of ganglioglioma, a tumorous growth mostly found in the brain tissues of children and young adults, not the spinal cord.
The initial surgery to remove the tumor in February 2012 went well, but Keith says doctors admitted afterward that they weren’t able to remove all of the growth. “They got most of it, but they said that it shouldn’t grow back anytime soon. They said at least five years.”
On July 24 of this year, however, Micah underwent an MRI during a regular checkup that showed the tumor had returned far more quickly, and aggressively, than anticipated. Micah was operated on again on Aug. 2 to remove the regrown tumor. Following that surgery, Keith says Micah complained of severe pain in his chest, leading doctors to arrange for another MRI scan.
The results were alarming. Keith says a vertebra in Micah’s spinal column had collapsed during the operation, leaving a portion of bone compressing his spinal cord. A subsequent emergency surgery was performed on Aug. 5 to relieve the pressure, but the ultimate outcome was devastating: Micah was paralyzed.
According to Keith, doctors have told her that there is a chance for Micah to walk again since his spinal cord was not severed, but it’s up to the body to heal as much as it can. “They really can’t tell me if he’s going to walk again,” she said.
In the weeks since the surgery, Micah has been undergoing intensive physical therapy to build his upper-body strength, which will assist with his adjustment to everyday life in a wheelchair. His family is also learning how to care for those needs that Micah can no longer rend to. “There’s just a lot of things that he has to adjust to, and we have to adjust to,” she said. “Basically, he has to learn how to live and function all over again, in a different way.”
Keith says approximately 20 to 40 percent of the tumorous tissue remains on Micah’s spine, which can no longer be operated on due to the damage suffered in the Aug. 2 surgery. For that reason, Micah also started weekly chemotherapy sessions on Sept. 16, which will continue on each Monday for the next 48 weeks. “Hopefully, this gets it…I hope,” she said.
The ordeal has been challenging for the entire family. “It’s been difficult, extremely,” Keith said. “It’s pretty much turned everything upside-down.” She has stayed with Micah at the hospital since the Aug. 5 surgery, which has meant the loss of her former job at Mountaineer. Her husband, Brian Keith, works and looks after their East Liverpool home along with Micah’s 16-year-old sister, Allisa.
To exacerbate issues, the family’s present home isn’t wheelchair-accessible and will not be suitable for Micah when he is released from the hospital in October. “He can’t come home to a home that he can’t function in,” Keith said. “So we are faced with having to move, too.” With only her husband’s income and rapidly mounting hospitalization and surgery bills, Keith admits they haven’t figured out how to accomplish finding a new home as well.
Help has been forthcoming, however. “I have an amazing family,” Keith said. “If it wasn’t for them, I don’t know how I would do it.” They organized a benefit for Micah that was held on Aug. 31 at Chrome Nite Club in Chester. Keith’s parents also created a GoFundMe account in Micah’s name for people to donate to, at www.gofundme.com/we-love-micah.
Parishioners at the family’s church, Avondale Baptist in East Liverpool, have joined the effort too, organizing the “Micah’s Walk in Faith” walk-a-thon at Thompson Park, scheduled for 3 p.m. today. Best of all, Keith says she received permission from doctors to take Micah to the park for the event. “We’re really excited,” she said.
For his part, Micah says he’s doing well, but that after so many consecutive weeks in the hospital, he was feeling a bit cooped up and homesick. In fact, he even admitted to missing school, as classes have resumed since he’s been hospitalized. “Just a little,” he said. Still, he’s enjoyed the visits he’s received from friends, family and members of his church youth group.
When asked the first thing he wants to do when he’s released from the hospital, Micah said, “To see the rest of my family that hasn’t been able to come.”