Maxwell Daniel’s primary concern these days isn’t the life-threatening brain tumor that sent his family‘s lives into a tailspin over the summer. He licked that without missing a beat.
What had Max’s stomach in knots recently was his first day at middle school this fall. Indeed, if having the normal fears associated with being a new middle school student is his biggest concern, his mom, Renee, counts that as a blessing.
In the spring of his fourth grade year, Max spent his days playing outdoors with friends “from sun up to sun down,” Renee said. So when Max began complaining of headaches in the evenings, Renee attributed it to his long days of rambunctious outdoor play. A couple of times after coming in, he’d have dinner and then vomit. But by morning, all seemed fine again.
“I really just thought maybe he was overdoing it,’” Renee said. “Maybe he was playing outside too hard, too long and getting overheated.”
The episodes of headaches followed by vomiting were not frequent. But one morning Max awoke too ill to school that day or the next, a rarity for the boy who loved school and hated to miss a day.
Renee called Max’s doctor’s office, and was told he might have the bug that was going around at the time. The nurse told her to call back if the symptoms were not gone in the next 24 hours. Max felt fine by the next day and returned to school, but within a day, he was ill again.
Concerned there was a more serious issue, Renee took Max to his pediatrician. An exam and routine neurological tests, were normal. Max’s doctor suggested he was suffering from allergies or even a migraine, but treatment didn’t seem to make an impact. Max’s symptoms intensified, and the Daniels took Max to the emergency room.
The tests, including another neurological exam, revealed nothing; Max again passed with flying colors. Doctors concluded Max was probably suffering from migraines. The doctor was feeling especially cautious, however, and took advantage of a slow night in the ER to conduct a CT scan. When the test results returned, the Daniels had an explanation for Max’s bizarre episodes – there was a large mass on the front right side of his brain.
The tumor – an anaplastic meningioma – was malignant. Its location on his brain ensured it didn’t impair Max’s speech, hearing or motor skills; this explained why he’d shown no neurological deficits and aced his neurological exams. According to doctors, the mass was creating pressure on the left side of his brain, causing the nausea and headaches. The doctors also believed the mass had been growing for a long time, perhaps since Max was an infant.
Max had surgery at the Children’s Hospital of Philadelphia to remove the tumor, which, fortunately, had not invaded the brain, but sat atop the membrane surrounding it. Max’s tumor was chemo-resistant; traditional treatments wouldn’t do the trick. Max’s team determined he would need radiation. His pediatric oncologist recommended proton beam radiation, a more focused form of treatment designed to spare the healthy tissue near the tumor’s location. When the Daniels sought proton therapy in Philadelphia, they found the machine wasn’t ready for use. A search for alternative sites with availability in the time frame Max needed and a recommendation from Max’s oncologist led the Daniels to the MD Anderson Proton Therapy Center.
“She told me she’d contacted MD Anderson, and they would call me, and I thought, ‘Yeah, right. How long’s that going to be?’” Renee remembers. “They called us within 24 hours. They were ready for us so soon that I needed a few more days to arrange for the trip there. The first interaction was very informative, and we felt completely at ease about what we were about to face.”
When Max arrived for treatment, his parents were surprised to learn that he was the 2,000th patient treated with proton therapy by the MD Anderson Proton Therapy Center.
“It gave me a lot of reassurance to know that so many others had already been helped by the team at the Proton Therapy Center,” said Renee.
Renee and Max stayed in Houston at the Ronald McDonald House for the seven weeks of Max’s treatment. Because they were away from family and friends the entire time, Renee kept a Facebook page and website updated with Max’s progress and photos of the two of them exploring Houston and the surrounding area.
“People would see the pictures, and they just couldn’t believe it,” she said. “They were amazed at how well Max was doing. People at the Ronald McDonald House would see him, and they’d ask who he was here with because they didn’t realize he was the one in the middle of active radiation therapy."
While at the center, Renee became enamored with the staff.
“The staff was amazing,” she said. “Going to the center every day wasn’t a thing of dread. We looked forward to it because these people – the staff, the other families and patients we met – became our friends."
Renee’s experience during Max’s treatment was so positive that at times she worried about when “the bomb was going to drop,” she said. “But it never came. He just did so well.”
So well, in fact, that Max started right back to school this fall, and surprisingly, the young boy who’d endured so much throughout the summer, was nervous.
“He never worried one time during his treatment,” Renee said. “But he was starting a new school with 900 students, and he was nervous about the new, bigger environment. It seemed kind of funny, but I figured, ‘well, if that’s all he’s worried about, we’re thankful.”