'She shed' wish comes true for Cambridge Springs girl

Nov. 18—For 9-year-old Sophia Larson of Cambridge Springs, the right way of observing this milestone doesn't have to be imagined.

Thanks to Make-A-Wish Greater Pennsylvania and West Virginia and the support of her community, she is well prepared to move forward as she and her family members keep their fingers crossed regarding what her mother, JoAnn Larson, called "the long road ahead of her."

It's a road that could be a bit easier to travel as the family looks ahead to a series of medical scans early next month to check the impact of the chemotherapy — scans that will continue every few months for years if things look good.

If Sophia needs to get out of the house, for instance, she can spend time in the recently completed "she shed" she dubbed "Sophia's Pony Palace." The structure, provided and installed by volunteers from Make-A-Wish, came with an attached pen for Twilight, her 9-year-old mini horse, and Sophia has more plans in mind as well.

"I want it to be an art studio for me, she said this week, "something to get away from family and play with my friend a bit when she comes over."

Together since they were both 5, Twilight and Sophia have grown up together, though Sophia has done most of the actual growing. At about 3 feet tall, Twilight comes up to Sophia's midsection and is nearly the size of a Great Dane.

"My dad said she looks like the donkey from 'Shrek,'" she said. It's an observation, she acknowledged, that is "kinda true."

Twilight doesn't actually come in the Pony Palace, but the shed opens into her pen and even has a horse door.

"She peeks her head or — or tries to," Sophia said.

The two don't ride like they used to and with her medical treatment Sophia hasn't been performing the horse-related chores she used to do, but she looks forward to training Twilight to pull a miniature driving wagon.

"We're both the same age and we've been together a while," Sophia said. "She just loves me for some reason."

When Sophia is in the mood for a bit more intensity than tiny Twilight can provide, that can be arranged as well thanks to the support of Drift PAOHNY, the Lake Erie Speedway drift racing community that has embraced her during her illness. Drifting is a style of auto racing that is less about speed and more about style as drivers combine acceleration, braking, steering and gear shifting to put their vehicles into a controlled spin around the track. Not that speed isn't involved — Sophia estimated the cars she has ridden in were traveling 60 to 80 mph.

"I personally like sliding sideways and going at fast speeds," she said of the pastime she became involved after a family visit to the racetrack in North East.

That random visit, her mother said, has since developed into a close bond with the drivers.

"There's been days she spent eight hours in drift cars, drifting around the race track," JoAnn said. "When it was really hard and really scary, these kids would just pull up in their cars and she'd just hop in and go out on the racetrack and go for all these crazy rides — I don't know if you've seen drift racing before."

JoAnn can imagine some parents who have seen such races wondering, "How can you put your kid in a drift car? Are you nuts?"

"I'm like, 'She's fighting cancer,'" she responds, laughing. "I feel like the drift car is a lot safer than the chemo."

The hard and scary moments have come far too frequently over the past several years for the Larsons.

What started four years ago as an apparent bump on the knee during a dairy farm field trip eventually twisted through conflicting diagnoses and multiple surgeries. One of the toughest moments came when JoAnn had to tell Sophia that the problem they had been assured was not cancer was, in fact, cancer.

Sophia had AFH — angiomatoid fibrous histiocytoma, a rare form of soft tissue sarcoma typically found in the extremities, according to the Cleveland Clinic.

Over the course of diagnosis and treatment, Sophia's family watched as she "put walls up," in JoAnn's words. The process began almost immediately with the cancer diagnosis and Sophia's announcement that there would be no crying.

"She put up really big walls and went inside of herself," JoAnn recalled, "and just tried to muscle through everything."

The approach didn't always work, such as when her fear of the MRI tube and her body's inability to handle sedation meant that general anesthesia was necessary. But now, after several years of such experiences, Sophia handles MRIs and CT scans with strength developed through plenty of chances to "muscle through."

"She's got an incredible amount of grit," JoAnn said.

Her daughter's resilience was hardly built in a vacuum, according to JoAnn. Its development was aided by the rest of her family — her father, Jason, and her older brothers, Jason Jr. and Gavyn, who carry her in from the car after her treatments and help keep things s normal as possible at home; their extended family, their church and the small town community that has been so generous; and the medical community at UPMC Children's Hospital of Pittsburgh that has made Sophia feel like their most important patient.

Connections to Make-A-Wish and the Lake Erie Speedway drifting community have provided additional unexpected support.

Providing the shed that Sophia asked for was a way to help her reclaim the independence that cancer and often grueling treatment tend to take away, according to a statement from the organization. It's a process that has helped more than 21,000 children from 2 1/2 to 18 years old in the region covered by local chapter and that depends on two things from the public: what the nonprofit calls a "wish referral" and the awareness of the organization's mission.

"The most common misconception about Make-A-Wish is that it only provides wishes for dying children," the organization stated. "On the contrary, wishes have the power to transform lives by creating an opportunity for hope and the ability to experience life beyond illness."

Having previously seen Sophia's cancer metastasize and reoccur, JoAnn said the family is cautiously crossing their fingers as they await the first scans following the completion of chemotherapy.

In the meantime, Jason has sold the older model Camaro he had planned for years to acquire.

In its place is a car that's good for drifting. The plan for next year is to get it outfitted for Sophia.

"I don't know where we would be without any of that," JoAnn said, referring to the various forms of community support. "They've kept us busy and happy and given us reasons to be joyful."

Mike Crowley can be reached at (814) 724-6370 or by email at mcrowley@meadvilletribune.com.