Teen’s journey from brain surgery patient to author
Parenting, it’s been said, is the job that never ends: your babies are always your babies, regardless of age. The luckiest see their offspring hit the milestones of talking, walking, going to school, heartbreak, graduation, college, marriage and, finally, becoming parents themselves.
But every child’s path has its obstacles, some minor, others serious. It’s a minefield, really, this parenting thing.
Perhaps most distressing are those times when your kids are hurting and you’re powerless to help. Some parents experience the worst of this when the cause is illness or disease.
“Nobody wants to see their kid in pain, that’s horrible,” said Jullie Camacho. “But to be told by lots of people that they really weren’t sure what was going on, and then further, some of them would actually say that they thought that is was psychosomatic, was difficult.”
The struggle Ms. Camacho is describing began in 2013, when her daughter Gabrielle, or “Gigi,” as she’s known, was an effervescent 11-year-old fifth-grader at Condit Elementary in Claremont. One day she was running track at school when she told the coach she could only see half of him.
“We immediately got an appointment with her doctor and got a referral to a neurologist,” Ms. Camacho said. The MRI showed a nine-millimeter pineal cyst. The doctor said it was likely something that formed during her development and wasn’t anything to worry about.
Pineal cysts are benign, fluid-filled sacs located in the back portion of the third cerebral ventricle of the brain. Small ones, of five millimeters or smaller, are common. They’re seen incidentally during routine neurological exams in about 10 percent of cranial scans, and rarely cause symptoms.
Larger pineal cysts, like Gigi’s, are less routine. These can cause a variety of symptoms, including headaches, pressure on the brain, vision abnormalities, and sometimes more serious conditions such as seizures or loss of consciousness. Their cause is unknown.
Gigi was given a prescription for her headaches and told to follow up yearly. Things remained status quo until mid-2015, when the by then 13-year-old’s headaches became an everyday occurrence, along with what she called “episodes,” where her upper body would tense up, her face would twist into a grimace, and she was unable to speak. Alarmed, the Camachos returned to the neurologist, who ordered another MRI and a sleep deprived EEG.
“He said there was no change in the MRI and that the EEG was normal,” Ms. Camacho said. “He felt it was psychosomatic.”
For Gigi, explaining her level of discomfort became more and more challenging.
“A lot of people didn’t really understand what was going on, so they’d say that I was complaining too much, or overreacting,” Gigi said. “When doctors are telling you it’s all in your head, or there’s nothing that they can connect it to, it’s kind of scary.”
Dissatisfied with the neurologist’s diagnosis, and noticing increasing symptoms, Ms. Camacho began a deeper dive for answers. She consulted new doctors, with still more dismissive diagnoses. Others were simply not sure what was happening. More tests were ordered, including a full endocrine panel and a sleep study. Everything came back normal.
“It was very, very challenging,” said Ms. Camacho, who along with her husband Joe, their son Aidan, 18, and Gigi, now 16, live in Upland. “There was a lot of stress, a lot of tears and a lot of sleepless nights.”
By September 2016, beset by increasing symptoms and wondering what was happening to her, Gigi was unable to continue with the rigors of traditional school, and began an online program.
With her child showing no signs of improvement, Ms. Camacho was heartened to find some pineal tumor support groups on Facebook.
“It was absolutely amazing to read patient’s stories that were so similar to Gigi’s,” she said. On the message boards, the name of a particular surgeon—Dr. Dong Kim—kept recurring, always accompanied by hopeful stories. The Camachos reached out for help.
It turned out Dr. Kim, director of the Mischer Neuroscience Institute at Memorial Hermann-Texas Medical Center in Houston, Texas, and professor and chair of the Vivian L. Smith Department of Neurosurgery at McGovern Medical School at UTHealth, was a leading innovator in pineal cyst surgery.
The family gathered Gigi’s sizable accumulation of medical records and Fed Ex-ed them to Houston. The phone rang a few days later, and a consultation was scheduled for November 8, 2016. After a roundtable group of several doctors agreed they could help, Gigi’s surgery was set for December 7.
After years of uncertainty, it was the first small victory for young Gigi, and her mother.
“You know moms know their kids, and I definitely knew there was something to this,” Ms. Camacho said. “I’m glad that I just kept digging.”
The family flew to Houston. The procedure went well, and after three days, Gigi was released from the hospital. The Camachos spent 18 days in Texas as Gigi recovered.
“Everything came back slowly,” Ms. Camacho said. “She was incredibly sensitive to light, sound and smells. We ate a lot of sandwiches and cereal, as she couldn’t stand the smell of food cooking.”
Back home, Gigi immediately felt a difference. The constant pressure in her head was gone. By her three-month follow up, 90 percent of her symptoms had subsided, but the “episodes” had not.
On Dr. Kim’s recommendation, Gigi saw pediatric neurologist, Dr. Minodora O. Totoiu, at Children’s Hospital of Orange County. Dr. Totoiu diagnosed her with paroxysmal dyskinesia, a rare, but non-life-threatening movement disorder. Gigi began taking a low dose of anti-seizure medication, and her “episodes” completely subsided.
She still has some processing delays, and the meds do cause fatigue, but overall Gigi is doing quite well. She’s even looking forward to enrolling in some traditional, on campus high school courses at Citrus College in Glendora, and to hanging out with her friends, like a typical teenager.
“It’s kind of hard to meet people when you’re constantly uncomfortable, so now it’s a lot easier for me to be able to open up with people, and not constantly be tired, or have headaches and pain,” she said.
Through her online school Gigi met Grace Wethor, a fellow 16-year-old brain tumor survivor (of a brain stem glioma). The pair became fast friends. Last August, Grace invited Gigi to a summer camp for kids with brain tumors—the Teen Heads Up Conference at Camp-Mak-A-Dream in Gold Creek, Montana.
Later, she asked Gigi to contribute a chapter to a book she was writing about kids with brain tumors. Young Grace’s recently published You’re so Lucky is a compilation of poems, art and chapter takeovers from survivors. For Gigi, recounting her journey was cathartic.
“I had a lot of fun with it,” she said. “I think just going over what happened just brought closure to the whole situation.”
Gigi and Grace will both be at the launch event for You’re so Lucky from 4 to 5 p.m. Saturday, April 7 at Barnes and Noble bookstore at The Grove, 189 The Grove Dr., Los Angeles. The event will include a reading, book signing and a panel discussion.
The entire experience, as one would expect, has changed the Camachos. These days they’re savoring the simple, everyday things that come with family life.
“I think this has given all of us a greater understanding of how to help other people that are going through things,” Ms. Camacho said. “We feel like it’s a really great opportunity for us to pay it forward, or pay back, the blessings we received from other people along our journey.”
Before all this happened, Gigi had planned to follow in her grandmother’s footsteps and be a special education teacher. She’s still thinking about education, but her trajectory, like her life, has changed.
“Because of the surgery and tumor, I’ve think I’ve slowed down my pace a little,” she said. “I’ve decided that I either want to go into occupational therapy or speech pathology.”
Gigi recently applied to be a volunteer at Pomona’s Casa Colina Hospital and Centers for Healthcare, in either the speech pathology or occupational therapy department. She expects to begin her training soon.