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Small boy fights tall list of cancer-related ailments
Editor's Note: This is the second in a series of stories in conjunction with Childhood Cancer Awareness Month.
As Marshall Pullen climbs the stairs, determined to make it to the slide, his mother, Stephanie, can't help but be proud.
He slides to the floor with a little help from his physical therapist and is quickly on his feet heading to the next slide. While this seems like a typical activity for most 5-year-olds, to Marshall's mother it's a moment deserving of multiple photographs and videos.
In 2012, Marshall was diagnosed with an atypical teratoid rhabdoid tumor, also known as AT/RT. It's a rare, aggressive, malignant tumor and only about 30 cases are diagnosed each year. Marshall is now cancer free, but his road to recovery still is a long one.
His multiple treatments left him with a weakened immune system that requires Marshall to cover his mouth and nose with a mask any time he's outside his home or around other people. It also means the Pullen family has to be a little more conscious about germs and cleanliness.
"We're still waiting for his immune system to bounce back," his mother said.
While they've made multiple trips to Cardinal Glennon Children's Hospital and other St. Louis facilities over the years -- and still make almost weekly trips -- the Pullens are now able to take Marshall for treatments much closer to home.
He visits the Kenny Rogers Children's Center in Sikeston, Missouri, three times a week for physical, occupational and speech therapy. He first started attending the center in August 2012, but was there intermittently between radiation treatments and chemotherapy. His work at the center was necessary to build up enough strength to withstand the treatments.
"I don't think we would have been near as able to do the treatments at all if not for the work done here [at the center]," said Derrick Pullen, Marshall's father.
He's a member of the center's board of directors, a position he held before his son's diagnosis. But he's now one of many parents in Southeast Missouri bragging about the staff there and the work he's witnessed firsthand.
Marshall spends three hours on his therapies, which Stephanie Pullen said she hopes will help him lead a more independent life.
He's learning to walk for the third time and making progress more rapidly than expected, but is not yet able to walk on his own. He leans a little and his right side remains weaker than his left.
The goal of the physical therapy is to help Marshall walk independently again. It's part of the reason his mother was so excited to watch him take the many steps -- and climb stairs, no less -- to reach the indoor slide in the play room just outside the room where he receives therapy at the center.
Hard work
But his treatment isn't all fun and games. He completes leg exercises, lifting 25-pound weights with each leg. Marshall completes the left side with little problem, but the exercises for his right side leave him shaking after just a few lifts. But he reaches the end and still has a smile on his face when he stands up to start his walking exercise, using a device to help hold him upright and prevent any accidents.
"He's a trooper," said Stephanie Pullen. "He's made so much progress in just the last month, or two months. I'm just amazed."
Judging by his red, sweaty face, the exercises are no small task for Marshall, but he still manages to blow kisses and give some high-fives when it's over. It's one of many reasons he's called "Super Marshall" at the center, a name he proudly announces as he does his exercises. He's also been known to wear a cape to treatments every now and then.
He also works on fine motor skills as part of his occupational therapy. He points his fingers, moves and turns his arm as he colors pictures, pops bubbles and makes letters in blue foam smeared across a desk. He also sits on a wide swing or a large bouncy ball to help him work on balance skills. The incorporation of games and playtime make it easier to forget he's exercising.
During speech therapy, Marshall works on enunciation. Language skills have been a struggle for many reasons, his mother said.
"He had a few strokes last year that contributed to that, and just everything his poor brain has been through," Stephanie Pullen said. "But looking at his MRI, you wouldn't think he would even be able to do what he's doing."
Therapists at the center are working with him to help move his lips more as he speaks, and to use full sentences rather than nodding or shaking his head. He'll soon be fitted with hearing aids, which his mother hopes will help improve his speech. His chemotherapy drugs caused slight hearing loss, particularly high-pitched noises, which could be a contributing factor in his difficulty pronouncing certain sounds.
Marshall also is an aspiration risk, meaning solid foods or liquids can enter his airway and lungs, so all his meals must be puréed until they reach a consistency similar to baby food. A thickener must also be added to any liquids he consumes.
Add that to the dental issues he suffers because of his harsh cancer treatments, his weak immune system and the dozens of other health concerns he battles every day, and it's enough to take over the family's life.
"I used to go to work every day. I would go home, cook supper -- it was a normal life," Stephanie Pullen said. "Now our days are therapy and doctor appointments and calling pharmacies for prescription refills."
While she's grateful for the opportunities she does have, like the nearby Kenny Rogers Children's Center, she said it's frustrating to realize how few options are available for children diagnosed with cancer. New treatments for children are rare, and most are simply treatments designed for adults that have been readjusted to accommodate a child's smaller size. There's also a significant gap in funding, federal and private, to research childhood cancer.
Ultimately, the Pullens just want to see their son lead a normal life. They're excited to think that one day Marshall making a trip down the slide won't be a rare moment to celebrate, but one to take in stride.
Details about Marshall's battle with cancer and updates on his status are available at www.pullenformarshall.com and facebook.com/pullenformarshall.