Case Study #111 - Odessa Enjoying Nature

 

"Odessa Enjoying Nature" 30" x 24" Oil on Canvas

Odessa Black had big blue eyes, long eyelashes, strawberry blonde hair and a smile that would light up a room. She was a master at playing UNO, loved watching women’s soccer games and telling jokes. Odessa always had an affinity for babies and children and especially loved rainbows, butterflies, and koalas. Odessa was sassy, quick witted and had an impeccable memory. She loved to tease her family and friends and was never afraid to share her opinion. She had a pure soul, was very loving, and cared so deeply. She would make a lasting impression on everyone she met. People would meet her and always remember her, she was truly unforgettable.

Odessa was having learning difficulties in 1st grade. After many medical tests, she was diagnosed with Hydrocephalus. She had a shunt placed in her brain to relieve the excess fluid. Then at a routine eye exam, lisch nodules in the iris of her eyes and a few café-au-lait spots were found which led to Odessa’s Neurofibromatosis Type 1 (NF1) diagnosis. Until this point, we had never heard of NF and Odessa was the only person in our family to have NF. Our life as a family would never be the same.

Prep sketch--might redo her expression

From age 6 until age 14, Odessa didn’t have many NF related problems. Then at a routine MRI, a tumor was found on her lower lumbar spine. After three surgeries, the tumor was completely removed along with her right L4 nerve root. Not long after, she started having neck pain and another MRI revealed tumors in her neck, specifically two that were growing like barbells pinching her spinal cord at C2-C3. After three major surgeries to remove them, they kept growing back.

When Odessa was 21, she had a MPNST (Malignant Peripheral Nerve Sheath Tumor) in the sciatic nerve in her left leg. Removing that high grade cancerous tumor resulted in no function below her knee and her foot. Thankfully it was fully removed and she did not require any further treatment. Odessa was a rare MPNST survivor! Odessa was determined to live her life as best she could. She continued to walk, although with great difficulty, for four more years.

Odessa loved nature. As a child through her young adulthood, she enjoyed experiencing life around her. From finding box turtles and baby bunnies in our yard, to capturing caterpillars and discovering what kind of butterflies they turned into. She had two dogs in her life, first a golden retriever named Leeloo and lastly a golden doodle named Milla. They would sleep on her bed and keep her company through her many surgical recoveries. When she could, we traveled to zoos and arboretums to experience the butterfly enclosures and she loved feeding birds at aviaries. Some of her biggest smiles happened when she was covered in butterflies or having birds perched on her arms.

She had an affinity for snow, and would ask her “Grandma Angel” for a lot of snow whenever it was in the forecast and smiled ear to ear while we complained of having to shovel it off the driveway. Odessa loved to play snow-ball fetch with Leeloo until her nose was bright red from the cold.

Over the years, Odessa had well over 100 MRIs and 27 surgeries. With each surgery there was significant nerve damage which resulted in loss of sensation and function in her body. She participated in a number of clinical trials with the hope of slowing the growth of the tumors. One drug actually made her tumors shrink and she regained a little function but she did not stay on it due to the study ending and the severe side effects. Unfortunately, all her improvement was lost.

The result of all the surgeries and the continual growth of the tumors on her spine left Odessa without the ability to walk, move her arms, or use her hands to any large degree for the last several years of her life. Even with the adversities brought on by NF over the years, Odessa was a happy person and she was able to adapt. She had been fully functioning, graduated from high school, had a part-time job, driver’s license and was fiercely independent. She then became totally dependent because of the NF. It was heartbreaking to know that no matter how hard we tried, we could not fix her or make her well.

It got to the point where Odessa could only move one finger which was just enough to scroll through Facebook. It was her window to the outside world and to keep up with the people she knew. As the tumors continued to grow, Odessa got weaker. She had trouble breathing and eventually her body simply wore out. She was truly a NF warrior and she could no longer fight the battle.

She was a force to be reckoned with, uniquely her own, and truly unforgettable. We all miss her greatly. We love you, with all our heart, to the moon and back, our rainbow girl.

Case Study #110 - Sahil Playing Tennis

Sahil Playing Tennis

Sahil Shah was diagnosed with NF1 at a very early age. Growing up, he was constantly reminded of his condition by the various medical appointments and treatments that he had to undergo. He was embarrassed about the café-au-lait spots on his skin and frustrated by the constant chronic pain from the neurofibromas that interrupted his everyday life. He first felt “bumps” pop up all around his body at the age of nine, and he wondered why nobody around him was going through the same thing. He went into his first appointment with his NF specialist and remembers being terrified at the fact that his “bumps” were really tumors and that he had an increased risk of cancer due to NF1. As he returned home from the appointment, he made the mistake of looking up NF1 online and immediately became confused and anxious. Over the course of the next year or so, one of the tumors on his forehead continued to grow at a rapid rate, and his NF doctor decided it was time to get surgery. Surgery was very scary for him, and even though it went well, he still could not shake the images that he had seen on the internet out of his head. As the years went on, he developed plexiform neurofibromas in his neck that have often caused him to have intense migraines and headaches. he has tried explaining the pain and the frustration to his family, who have constantly been supportive of him, but because they do not have NF, they weren’t able to truly understand what he was going through.

Because of this he often felt alone in his battle with NF, with no one to explain his pain to. But one day this summer, while expressing the pain from a migraine he had the night before to his brother, we thought to each other, “What if we created a community of kids and young adults who could understand what it’s like to live with NF?”.

Prep Sketch of Sahil Playing Tennis

This is where SketchNF was born. As he and his brother searched the internet searching for these communities, they stumbled across Doodle4NF, a previous initiative created by NF Network. They saw that Doodle4NF had celebrities create drawings and auctioned them off, and they thought, “What if we adapted this concept to include members of the pediatric NF community, and instead of celebrities doing the drawings, it would be the kids themselves?” Not only would this empower children with NF by allowing them to fight for themselves and to express their own battles and emotions that have come along with the condition, but we believed that, through art and social media, we could create a wide-spanning pediatric community that would ensure no child with NF would ever have to feel alone again.

Despite facing numerous challenges and setbacks along his journey with NF, Sahil's determination remains steadfast as he continues to pursue his diverse range of interests. From playing tennis, ping pong, and pickleball, to working in a lab conducting scientific research on NF this summer, Sahil finds great joy and fulfillment in these endeavors, refusing to let his condition hold him back.”