July Calendar Kid: Graden’s grand plans beyond neurofibromatosis
July 11, 2022
CHoR calendar kid Graden sitting in the grass petting a turkey

    Graden’s grand plans beyond neurofibromatosis

    “You really have to meet him to understand how overwhelmingly joyful he is,” said occupational therapist Jessica Wise of her patient, Graden Stewart.

    Graden has neurofibromatosis, a genetic condition that causes tumors to grow on nerve tissues. It can lead to a variety of symptoms, including neurofibromas (bumps in and under the skin), learning difficulties, eye or vision problems, challenges with executive functioning and more.

    “At around 2 and half we started speech therapy and not long after Graden was diagnosed with neurofibromatosis, or NF for short. Specialists soon found two brain tumors, both of which are inoperable but thankfully stable,” said Graden’s dad, Garner. “We then realized some of the developmental and learning delays we noticed were most likely due to NF.” 

    Our neurofibromatosis program is designed to diagnose the condition and bring a team of experts together to care for each child’s unique symptoms and needs. For Graden, the team has included oncologists, behavioral psychologists, ophthalmologists (one of the tumors is directly on his optic chiasm), educational advocates, and speech and occupational therapists. He also has regular MRIs – four times a year in the beginning, down to annual scans – to monitor for tumor stability and new tumor growth. He has recently begun participating in a neurocognitive study through our neurofibromatosis program too.

    Therapy has helped Graden thrive

    Now 7 years old, Graden has been seeing Jessica for occupational therapy since his diagnosis as a toddler to help him improve his motor and visual skills.

    “Jessica knows Graden, she loves Graden and from the beginning she figured out every possible way to work with Graden and all of his quirks and sometimes over exuberance,” said Garner. “To this very day she can tell the second he is just being stubborn or truly has an issue that needs work and she comes up with the most incredible ways to keep him engaged and making progress.”

    Through games, obstacle courses, and arts and crafts, Graden has learned how to hold a pencil, get himself dressed, fasten buttons and engage in typical childhood play activities like puzzles. He has grown exponentially and continues to set and achieve goals every week. Jessica loves hearing him say, “Ms. Jess, I did that all by myself – no help!”

    He also practices his therapy skills when playing with his amazing big sister who has observed her parents incorporating OT in the daily routine at home and run with it.

    Not defined by his diagnosis

    Neurofibromatosis isn’t what defines Graden though. There’s a joy and kindness about him that makes him uniquely Graden.

    “He approaches everyone he meets with genuine interest and compassion. When you meet him, he’ll want to know if you have pets, if your birthday is coming up and if you need him to come to your house to mow your lawn,” said Jessica. “I have never witnessed a person interact with Graden without leaving ­­with a huge smile on their face.”

    His speech therapist, Meghan Reitz, agrees. Though Graden graduated from speech therapy a few years ago because of his great progress, Meghan says she’ll never forget him and his funny, energetic personality.

    “When he was in speech therapy, we worked on a variety of receptive and expressive language tasks. We also paired up with another patient to work on social skills and playing with peers,” said Meghan. “When he started speech, he only used a few words. By the time he graduated from therapy he was able to successfully communicate a variety of his medical wants and needs.”

    From limited vocabulary to living a fun and friend-filled life

    CHoR patient Graden smiling in the car with a green stuffed animal on his headToday, he makes friends everywhere he goes and enjoys too many things about life to list them all.

    “Graden is one of the most loving and empathetic people I know. He doesn’t know a stranger,” said Garner. “I can't tell you how many contacts I have on my phone from meeting and having half-hour conversations in grocery stores, parking lots or farmers markets. We have literally met pilots, heavy crane operators, professors, underwater welders and one incredible therapy donkey who is fighting cancer, all because Graden started the conversation! Well, not with the therapy donkey. She got loose from her owner at the park and came running to meet Graden who immediately wrapped her up in a huge bear hug.”

    He’s made his fair share of buddies at CHoR too – from Mr. Jose at the security desk on our Brook Road Campus to the anesthesiologists at the Children’s Pavilion “who don't mind being respectfully told how to do their job by a 7 year old who has been in an MRI more times than any human should ever have to,” according to Garner, who also describes each one as “outstanding – no ifs, ands or buts.”

    Graden also loves the color green, exploring new places, as well as school and learning even though he had a bit of a rough start with that. He has an incredible sense of direction and could tell you four different ways to get to the hospital from his house three counties away. He wants to be a “road worker” when he grows up and is known for critiquing recent road work and paving. He also has his own shovel to fill potholes in the driveway, some of which were made to fill other potholes.

    With the perseverance, passion and strength he’s shown in his short life thus far, we’re sure he’ll meet this and any other goal he sets for himself.

    Learn more about neurofibromatosis and our care for kids with this condition at CHoR.

     

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