Bags of blessings | Young teen uses brain tumor experience to bring healing to others

You won’t find words like resection, anesthesiologist, magnetoencephalography and pilocytic astrocytoma on a second-grade spelling test, yet they quickly became part of young Alyssa McElfresh’s vocabulary after doctors discovered a brain tumor in her left temporal lobe.

“I was scared and we questioned Jesus and we were mad at Him but through my journey we found out that He gave me this tumor to share my testimony.”

Alyssa, who turns 13 this month, has become somewhat of an ambassador for children dealing with pediatric brain tumors. Four times a year she and her mother lovingly stuff goodies into “Blessings Bags” that they deliver to children in the pediatrics unit at Naval Medical Center San Diego. As she visits the bedsides of her peers, she has plenty of experiences to share.

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Alyssa was just 7 when her parents, Ryan and Sandra McElfresh, took her to the eye doctor for a routine eye exam in 2008. After discovering that Alyssa’s vision was severely impaired in her right eye, the doctor ordered an MRI.

“That’s when they found out I had a brain tumor,” Alyssa said with the clinical certainty of someone who should be much too young to know about such matters.

The tumor was diagnosed as pilocytic astrocytoma, a grade one plum-size benign mass on the left side of her brain. According to the American Brain Tumor Association, astrocytomas are tumors that “arise from astrocytes—star-shaped cells that make up the ‘glue-like’ or supportive tissue of the brain.” Tumors in the grade that Alyssa has are generally slow-growing and typically do not spread.

“I wasn’t really sure what it was,” she said. “I freaked out about it, but then my mom and dad told me—and this is how I understood what a tumor was—it’s extra tissue in your brain that you don’t need.”

The tumor, which Alyssa named “Olivia,” was situated in a difficult spot and her neurologist determined that surgery would likely compromise her motor skills.

“Her sight fibers, the fibers for vital function, were laying right on top of the tumor,” Sandra said. “That is one of the reasons why the prognosis was that she was not going to see or that she wouldn’t have her memory or would have gait issues.”

Because of the dangers, doctors decided to wait on surgery, opting instead to monitoring the tumor’s growth.

“He didn’t want me to have surgery until it grew or I had seizures because he wanted to preserve my quality of life,” Alyssa offered matter-of-factly.

So a four-year waiting game, dotted with doctor’s appointments and endless tests, ensued. In the meantime, Alyssa’s parents tried to maintain as much normalcy as possible. Alyssa, a student at Santee’s Pride Academy, enrolled in dance and Girl Scouts, while her older sister, Taylor, learned how to drive. And when their dad, a chief assigned to the Navy’s antisubmarine warfare division, was deployed to Iraq, Sandra assumed dual roles at home.

By fall 2012, however, the tumor forced the doctor’s hand and Alyssa’s first surgery was scheduled for that October. He prepared the family for the likelihood that she would have significant deficits impacting her speech and mobility, and perhaps causing even more damage to her sight than her already blind right eye.

“I was nervous of course, because it was my first surgery,” Alyssa said.

Some of her jitters were eased by a brown bear, gifted to her with its own hospital gown by a representative from the Brain Tumor Society.

“I’ve had her ever since I was diagnosed,” Alyssa said. “I named her Faith. Ever since then I always sleep with her. I take her to all of my surgeries, all of my MRIs.”

Also helping her was the pre-op medications that made her “loopy.”

During the surgery, her doctor left remnants of the tumor around her vital fibers intact in an effort to lessen post-op deficits.

“After my surgery I wasn’t supposed to be talking, walking or seeing and I’m doing all of that,” she said.

Sandra said that after reviewing a post-operative MRI the neurosurgeon, a practicing Christian, said Alyssa’s recovery was beyond what he could have hoped for her.

“So basically what you are telling me is that it’s a miracle that she’s speaking and that she’s seeing and that she can move her toes or whatever,” she told the doctor in response.

But by late last year, the tumor had grown back even deeper, prompting doctors to schedule another surgery this past January. During Alyssa’s pre-op appointment, however, doctors found a surprise.

“In three weeks the tumor shrunk and moved closer to the surface,” Alyssa said. “Brain tumors don’t do that, so we knew that God did that.”

Unlike the first surgery, in this one the doctors were able to remove all of the tumor. And yet, only a few months later, they were stunned to find another growth in the same location. Alyssa underwent her third surgery in June.

“My doctor found out that there is a group of cells up above where he takes out my tumor and every single time he took out a tumor one would drop and start growing; so this time he took out my whole left temporal lobe,” she said,

Doctors are confident that with the cell cluster and temporal lobe removed, the tumor will not return this time. On the slight chance it does, radiation will be the treatment plan.

“If it comes back we would see symptoms right away, like slurred speech or blindness or trouble walking,” her mom said.

“Each surgery, of course, he’s (the doctor) going to tell us the worst-case scenario of what the prognosis would be, but we always had that faith and that trust that she was going to come out just as whole as she was when she went in. He agrees it’s a God thing, that it’s nothing that he did. God used his hands and God guided him, but it’s all a God thing. She shouldn’t be walking, talking. She should be in a wheelchair and she’s not. It’s just a blessing.”

Remarkably, Alyssa has had minimal effects with the removal of the temporal lobe. She continues to have recall issues, which are expected to ease over time. She giggles when describing her difficulty with certain words, mixing up Michigan and missionaries, and pretzel and bell pepper.

It is unlikely, though, that she will ever regain sight in her right eye.

“It doesn’t really bother me,” Alyssa said. “With both of my eyes open I can see perfectly fine.”

Although in the clear for now, Alyssa and her mom still make trips back to the hospital every three months for testing and MRIs.

They don’t enter the hospital empty-handed.

 

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During her surgical stays at Naval Medical Center Alyssa would often play hangman with her parents, fill in her coloring books or draw on blank paper she brought to keep busy. Her iPod joined Faith the bear as a welcome companion. But as she walked the halls of the pediatric ward Alyssa observed that many of her ailing peers were bored.

“When I was in the hospital we noticed that there were kids that didn’t have anything to do,” Alyssa said.

She shared her discovery with her mom, who offered up a solution she saw on the Internet: toiletry bags with goodies for the homeless. They modified the idea for the needs of young patients.

“My mom and I thought to call it Blessing Bags,” she said. “So we had people donate stuff like crayons, coloring books and stuffed animals.”

As she distributes the bags, she visits with each patient, hoping that her gift and story—including her prescription for fear—render comfort to tired and frightened children.

“I learned that I can’t be scared and do an activity at the same time, so that’s why I pray,” she said. “So when I pray to Jesus and talk to Him everything is better and I’m not scared anymore. When I pray to Him my worry is gone because I can’t pray to Him and be worried at the same time.”

Giving back has been a critical part of the healing process.

“It’s been a journey and we learned a lot and Alyssa is able to share that with other kids her age,” Sandra said.

In addition to her Blessing Bag ministry, Alyssa has formed Flip Flops and Polka Dots, her own fundraising team for the annual National Brain Tumor Society Walk. Supported by dozens of friends and family members who walk with her, Alyssa has raised about $12,000 in four walks.

“It’s fun walking with my friends,” she said. “I go up and speak and share my testimony.”

Several weeks ago she was also one of the stars of the day for the Pediatric Brain Tumor Foundation Ride for Kids. Alyssa and several other pediatric patients enjoyed an outing that included a one- to two-hour escorted motorcycle ride.

Fully recovered and able to do any non-contact sport or activity, Alyssa also remains busy by volunteering at her church’s Parents Night Out evenings as well as with the junior high worship team. Hoping to become a kindergarten teacher, she also helps out in the nursery.

“I like working with kids,” she said. “At my church I work with the toddlers and I like to babysit.”

Pastor Phil Herrington of Pathways Community Church said that over the years he’s frequently observed people going through major crises. He marvels at Alyssa.

“The ones who weather their storm best are those who keep their focus on God and others,” he said. “Alyssa has amazingly found purpose in her painful experience. She and her family have transformed a recurring brain tumor into a ministry to others. They offer comfort and hope with the comfort they have received from God and His people.”

At home she enjoys baking with her mom and cooking with Dad. Her dream is to win a contestant slot on the Food Network’s “Rachael vs. Guy: Kids Cook-Off.”

 

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Food is definitely on her mind as her family anticipates this year’s Thanksgiving feast, the most hopeful in recent years. And although she can’t wait to dig into the pumpkin and apple pies, she’s also cognizant of the much deeper meaning of the holiday.

“I’m thankful for my family and I’m thankful for Jesus and I’m thankful for my friends, my teachers, and I’m thankful for meeting other kids with brain tumors, too, so I didn’t feel alone,” she said, offering additional thanks for her doctors, having a roof over head and for the military who keeps her safe. “And being able to eat food and serving for Jesus. We do different activities to serve Him. It’s fun serving Him.”

Sandra acknowledges that Thanksgiving has taken on a new significance in the wake of her daughter’s medical challenges.

“We’re just so thankful that’s she’s here, because we didn’t expect her to be, and we are thankful that God gave her to us to be her parents and to walk this journey with her,” she said, her voice cracking from the reality of pain and hope. “We’re just blessed because so many parents aren’t.

“There’s been times that we questioned, like when she was first diagnosed. Why Alyssa? And then there’s always that question why was she spared … when others aren’t.”

Those and other questions are on her list when she finally sees Jesus in heaven.

“But it’s not about that now,” she said. “It’s about how we can help others, bring comfort and be the hands and feet to others through her journey.”

Alyssa agrees.

“I feel like I got closer to Jesus,” she said. “Lots of people have told me that I have inspired them.”