Rootin’ for Regen
A child saying the word “Mom” or kissing her on the cheek may seem like normal, everyday occurrences, but those are not things the parents of Regen Morris are taking for granted these days.
Tishia and Daniel Morris of Sevierville are grateful for each milestone — no matter how small — their youngest son, 12, has made since an encroaching illness made its presence known.
A rare form of brain cancer has turned an active child into one who can only answer yes or no questions by blinking.
But it hasn’t take the essence of the sweet, happy, artistic, faithful and determined child his family and friends have come to know.
Regen, who celebrated his 12th birthday on Thursday during his second day at St. Jude Children’s Research Hospital in Memphis, also spent Thanksgiving, Christmas and New Year’s in a hospital bed.
His aunt Joy Maples, sister of Tishia Daniels, said it was Regen’s basketball coach at Pi Beta Phi who in mid-October first noticed something was not quite right with the sixth-grader. The boy, who was the top scorer for the team last season, didn’t seem to be giving it his all. When his father asked what was wrong, Regen told him his right leg felt funny.
Figuring it was something simple like tendinitis, Regen started wearing a brace on his leg and kept playing. It wasn’t long, however, before his family noticed Regen seemed to be dragging his right foot a little. Then his right arm became affected, drawing up and becoming difficult to use. At a family dinner, Regen’s speech started to slur and later he asked his aunt to help him with a report he was writing for school.
“He brought me his paper and he said, ‘Joy, can I tell you what to write and you write? I can’t make my hand know what my brain’s thinking,’” Maples recalled. “I thought he’d had a stroke.”
Maples, who was keeping Regen and his brothers Walker and Braeden overnight while their parents were away for a belated anniversary celebration, called her sister and told her they needed to come back. Maples took Regen to meet his parents at the emergency room at East Tennessee Children’s Hospital that next morning, Nov. 5.
“And when he was going into the hospital he said, ‘Honey, I think something is really, really wrong with me,’” Maples recalled Regen saying.
Something was wrong, but it took Regen losing the ability to move his limbs or even talk, two months of tests and three hospitals to determine that he was suffering from anaplastic astrocytoma, a rare form of brain cancer. What were at first diagnosed as two lesions on either side of his brain were eventually determined to be signs of the Stage 3 cancer that has been found in three places in his brain.
Even more rare is the disease’s appearance in a child; it is most commonly diagnosed in men 30-50, Maples said.
As the disease limited Regen’s motor skills and stole his voice, Maples said her nephew taught himself the alphabet for sign language while he still had use of his left hand. “He downloaded an app and he made us learn, ’cause he was like, if this is how I have to communicate then you’re going to learn it so I can talk to you all,” Maples said.
Regen was transferred from Children’s in Knoxville to Children’s Healthcare of Atlanta at Scottish Rite, to start treatment for acute disseminated encephalomyelitis (ADEM), which is what he had first been diagnosed with. But weeks passed without any improvements.
“He’s had so many MRIs, spinal taps and CT scans,” Maples said. The Atlanta hospital decided Regen didn’t have ADEM, but couldn’t figure it out. They ruled out cancer and other conditions at first and started a process of elimination.
Things came to a head on Christmas Eve when Regen became sick, vomiting every 10 minutes, Maples said. Christmas night, the physicians ordered another CT scan and found that the two lesions that had started out on either side of his brain were now touching. A brain biopsy was scheduled for two days later and that’s when word came that Regen had brain cancer, with malignant tumors found in three spots.
“The medical prognosis is not positive by any means for this cancer in Stage 3,” Maples said. But that’s not something the family is focusing on. They are putting their faith in a higher power.
“We’re very aware of the reality that Regen has the worst brain cancer that you can have, but Regen is a warrior,” Maples said.
None of this has changed Regen from the happy boy he’s always been.
“He still smiles,” Maples said. “Don’t get me wrong, he’s in some pain. He experiences very bad muscle spasms. It takes two or three people to pull him out (of the spasm). You’ve got to break the spasm or he’s just lying there in pain for hours and hours.”
He has full cognitive function. He expresses happiness when he recognizes a visitor. He does get frustrated trying to talk.
He loves having people and loved ones around. On days that his brothers or his girlfriend Kennedy Smith have visited, he’s not suffered spasms.
“It makes the difference between really bad days and really good days for him,” Maples said.
Friends and family have all made trips to see him.
“When his brothers are there, that smile is there all the time,” Maples said, despite the pain he is experiencing. “We’re amazed at how he smiles and keeps so positive about it.”
Maples began a Facebook group to help Regen see how many supporters he has in his fight, to keep loved ones informed and to seek prayers.
“I wanted to be able to read Regen what everybody was wishing for him, because he needs to feel that,” Maples said.
The group has grown to include more than 26,000 members and they are sought out as prayer warriors when the family sends out requests. One request was for Regen to be able to speak. The day after that request, he said the word “Mom.”
“It was amazing,” Maples said. “It was a very beautiful moment.”
Another prayer was answered with Regen was able to kiss Tishia on the cheek. “She needed that and he needed that,” Maples said.
“God’s been very gracious in letting people witness some very powerful moments,” Maples said.
The family is looking ahead with positive thoughts. The last few days have been spent with doctors determining their next course of action. Radiation is part of it. Beyond that they’re not sure, but their faith and the support of those who have joined the group will provide a foundation.
“Every time we put a specific prayer — and we save those for things we really want to happen for Regen — every one of them happens,” Maples said. She said she’d love to put a request for prayers that God would heal Regen that very day, but doesn’t think it’s the time to ask for immediate healing.
“Little steps to big is a miracle,” she said. “We just think when our prayers meet God’s will, that’s when miracles happen.”