Patient family credits compassion, support to positive patient experience

January 4, 2017

1517patientexperience640When Brande Nester’s son, Bennett, was diagnosed with a cancerous brain tumor at 18 months old, his diagnosis meant frequent visits and prolonged hospital stays for treatment at Texas Children’s Hospital.

“My son was diagnosed with pineal pilocytic astrocytoma,” Nester said. “The type of brain tumor is very common but the location of his tumor is very rare since it is located in the middle of his brain.”

After his cancer diagnosis in 2011, Bennett and his family had been in and out of Texas Children’s, sometimes spending up to six weeks at the hospital. But through all the ups and downs, it was the compassionate care and support from his care team that made all the difference to Bennett and his family.

Nester recalls a time when her son spent Christmas in his hospital bed at Texas Children’s.

“All of the nurses on the oncology floor were wonderful and tried to make us feel at home,” Nester said. “They helped decorate his room and some were dressed up in their holiday attire. There were so many volunteers and donors coming in with gifts for Bennett which made it extra special for him and for us.”

Just like any parent of a sick child, the emotional and financial stresses were taking a toll on the Nesters who had to juggle time off from work to be with their son for his chemotherapy treatments. But Texas Children’s staff alleviated much of their burdens and made sure they were comfortable throughout their hospital stay.

“Every time we’ve been an inpatient here, they’ve all been so wonderful,” Nester said. “They made sure we had the resources we needed. If we were tired, especially when our son was here the first time, they made sure we had a room at Ronald McDonald House so we could rest and take a shower. Whatever we needed, they’ve always watched out for us.”

Today, 6-year-old Bennett is doing well. After undergoing several unsuccessful rounds of chemotherapy, he completed proton radiation in February 2015 which significantly has shrunk the tumor in his brain.

“The tumor is stable now, so we’re just going to continue with MRIs every four months, and as long as no new symptoms present themselves, he’s going about his life as a normal child,” Nester said.

As a way to give back to Texas Children’s, Nester has partnered each year with Build A Bear to distribute bears to sick patients at Texas Children’s. When Bennett was in the hospital, one of the gifts that he received was from two sisters who had lost a sibling to cancer. They had given him a Build a Bear and his eyes lit up. Nester told her husband, “If we’re lucky enough to leave this hospital, I want to do this next year. We’re going to pay it forward.”

Since the launch of Bennett’s Bears in 2012, the Nesters have donated more than 8,000 Build a Bears to Texas Children’s patients.

“Half of the time, I just look at the parents just to see their expression because they haven’t seen their child smile in a very long time,” Nester said. “It’s so rough having your child in that hospital bed knowing they can’t get up. If your child smiles for that one little second, it is a wonderful experience for the parent.”