Keeping up with Amanda: Life after brain surgery

Amanda LePage is now a happy 9-year-old.In most ways, Amanda LePage is just like any other rambunctious fourth grader. She loves school, dance class, playing basketball and keeping up with her twin sister Macy and older brother Nathan. Sometimes it just takes her a little longer to do these everyday things. That’s because Amanda has been through a lot in her short nine years.

Amanda was just 5 months old when she was brought by helicopter to Boston Children’s Hospital for a hemorrhage in her brain from an intracranial aneurysm, a type of vascular malformation. Despite long odds, Amanda survived two life-saving brain surgeries and a massive stroke that left her with cognitive delays, no use of her left arm or hand, and weakness in her left leg.

In the years since, Amanda has been back to Boston Children’s for a host of other medical problems, including a second brain aneurysm hemorrhage and hydrocephalus, or extra fluid in the brain. Her mom, Amy, keeps a running list that’s two pages long.

Throughout Amanda’s journey, neurosurgeon Dr. Edward Smith has been by her side. Smith performed Amanda’s first life-saving surgeries, and has cared for her since that time, watching her closely with follow-up visits.

Amanda and her twin sister Macy visit with Dr. Smith.
Amanda, right, and her sister Macy with Dr. Smith

“Not only did he save her life, but he was also prepared for the possibility of her stroke and discovered her second aneurysm and the hydrocephalus,” says Amy. “He’s always there when we need him.”

A surprising new diagnosis

It was during a routine brain scan in July of 2015 that Smith and radiologist Dr. Caroline Robson made an unexpected discovery — a tumor and related cyst on Amanda’s brain.

“Dr. Smith credited Dr. Robson for finding the tumor because it was extremely difficult to spot,” says Amy.

The LePages were stunned.

“We just couldn’t believe Amanda had a brain tumor after everything else she had been through,” says Amy. “Even Dr. Smith said he had never seen a child have a brain tumor after an aneurysm.”

But there was good news: Smith was almost certain the tumor was benign. Still, he wanted to remove it quickly, before it had a chance to grow further and cause any problems.

Unfortunately, the timing wasn’t great. The family had a vacation planned for August and Amanda was starting school again in September.

“We were ready to cancel our trip and schedule the surgery right away, but Dr. Smith took us aside and gave us some great advice,” says Amy. He told them to enjoy their summer, take their vacation and let Amanda get started in school. Then they could schedule the surgery a few weeks later.

“We have complete trust in Dr. Smith, so we felt comfortable waiting. And it all worked out perfectly, because Amanda got to meet her classmates and get settled in school before the surgery — her class even made her a video for her recovery.”

More brain surgery, and good news

During surgery, Smith successfully removed the tumor and drained the cyst. Fortunately, another one of Amanda’s regular doctors, anesthesiologist Dr. Craig McClain, was able to be on hand.

Amanda stands in the hospital with her anesthesiologist Dr. Craig McClain.
Amanda and Dr. McClain

Because Amanda has an allergy to anesthesia, called malignant hyperthermia, she needs special precautions whenever she has it.

“Dr. McClain knows Amanda and her history, so we always feel better when we know he’s with her,” says Amy. “And, just like Dr. Smith, his level of commitment to Amanda is amazing — he’s always there for her whenever she has a procedure.”

A week later, Amy and her husband Bob discussed the pathology results with Dr. Peter Manley of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. They were relieved to learn the tumor was indeed a low-grade glioma that needed no further treatment.

For now, Amanda will have brain scans every six months and continue to follow-up with Manley, but her doctors don’t expect any further complications.

Back to being a regular kid

These days, Amanda is back to doing her favorite things — making new friends, going to school, reading and dancing. Although she still struggles physically sometimes, Amanda comes up with her own unique ways to do things.

“She’s feisty, stubborn and headstrong,” says Amy. “And we’re so glad she’s here.”

Learn more about Boston Children’s Cerebrovascular Surgery and Interventions Center or the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.