Case Study #116 - Frankie's New Wheels

"Frankie's New Wheels" Oil on Canvas. 2023. 40" x 30"

Franklin was born with a genetic disorder called Neurofibromatosis (NF). He was 4 months old when his parents were told he would never walk, talk or have the abilities more than an infant. They were warned he likely wouldn’t live to see his first birthday.Today, Franklin is a happy 13-year-old boy, always smiling and ready to play or have a book read to him. He loves to shake hands with everyone he meets and often greets everyone at church and school with a handshake or a high-five. He knows his colors, shapes and most body parts. He often will scootch on his bottom to the table with his IPad on it and drag it to someone to start his music videos. He currently is in love with Miranda Lambert. Franklin uses modified sign language or pictures to tell us many things: when he is hungry, wants to go to bed, watch videos, play games, or get on the bus to go to school. Daily he walks, using a walker for support, nearly 2 miles at school. He goes to the pool twice a week to do water therapy and get a few piggyback rides in the water too. 

Prep Sketch

The family has a nurse that helps Franklin 40 hours each week. She attends school with him and accompanies him to the many many doctors appointments. Franklin sees seven specialists and many therapists on a regular basis. Franklin is trach and g-tube dependent. He needs assistance to walk, bathe, eat, and dress. In 2014, Franklin’s airway had become so compressed it was less than 3 millimeters at it’s most narrow. His tumor was wrapped into his airway and down into his heart valve compromising both and yet they continued to grow at a very rapid rate. The family was told to again prepare to bury their child. Doctors were stumped about what to do and reached out to others. His scans were sent to Cincinnati Children’s and doctors there agreed to see him. In early 2015 a longer trach was placed in Franklin’s airway to open it up and stabilize it. In 2016, Franklin qualified to start an investigational drug. In the first 2 ½ years that followed the family drove 12 hours each way to get this life saving drug. They logged 726 hours driving, over 41,380 miles or nearly twice around the entire Earth. Franklin's family spent over 119 nights in a hotel room. In that same 2 ½ years Frankie’s targeted tumors shrunk 33%. His family continues to travel, and his tumors continue to remain stable 7 years later. Today, Frankie is stable and the healthiest he has ever been. He is smart, funny, cute, onery, and a flirt. Every day he shows us how to live life to the fullest. This is NF.

Case Study #114 and #115 - Thad's Eye Surgery

The Journey Starts Today (Before and After)
2022
Oil on Canvas
Diptych, Each 36" x 36"

Thad is a Pokémon-loving third grader who was born in Washington, DC and lives in Mesa, AZ with his mom, sister, bonus dad, and bonus brother and sister. He is our courageous little king (that’s what his name means!) and we love him so. You couldn’t meet a stronger, more brave young man. His favorite color is red, and he has some pretty awesome signature dance moves. If you meet him, definitely challenge him to a dance off. Also, if you know how to launch a successful YouTube channel, let him know cause that’s his dream. And he wants to be a life coach when he grows up. We think he’d be great because he has been doing hard things since the beginning.

This painting shows Thad's Enucleation procedure which is performed as a last resort, most often due to ocular tumors. The swelling, bruising and discomfort subsides over time. Six to eight weeks following enucleation, a patient will visit with an ocularist to fit a custom ocular prosthesis.Once the contents of the eye are removed, an implant is placed into the scleral shell. The sclera, Tenons, and conjunctiva are then closed over the implant and a temporary (clear plastic) conformer is put in place. The real artificial eye (prosthesis) is made in about 6-8 weeks.Thad had to have fat removed from his side (they had a really hard time finding any) and put into his eye cavity during a second, unplanned, surgery because the first time it didn’t take. All in all, he had three eye surgeries for the enucleation. Two for the original removal and one to lift the lid. This is in addition to the surgeries he had as a baby on his eye.

Case Study #113 - Eli After Surgery

 

Sound After Vestibular Schwannoma Surgery
40" x 30" Oil on Canvas. 2021.

Medical procedures have been a part of Eli’s life for his entire 14 years. When he was a baby, E was diagnosed with a rare eye condition, in which his retina detached at 12 months, leaving him ultimately blind in his left eye. His right eye has a small cataract that continues to be monitored. At 5, Eli was diagnosed with Neurofibromatosis type 2 (NF2), after a skin biopsy. Very young for a person, especially with a spontaneous case, to be diagnosed. This is when more procedures came about.

When Eli was 9 he had a C-5 tumor removed that was pressing on his spinal cord, and another at T-5 at age 11. MRI’s, audio exams, eye exams and numerous specialist visits across the country have been a common part of life. At age 13 when Eli’s hearing began to show decline and his right Vestibular Schwannoma (tumors on his auditory nerves which control hearing and balance) began to grow, he had cranial surgery in an attempt to preserve hearing. The family was unsure if Eli would wake up with any hearing at all in that ear, but thankfully, his hearing has remained stable after surgery.

Although the family is never free from appointments, change or worry, Eli is an amazingly well adjusted and resilient teen boy, who loves friends, skating, bike stunts, and to wear his earbuds, and thankfully, is still able to listen to music through both.

Case Study #112 - Jacob on a Photo Shoot

"Jacob on a Photo Shoot" 2023. Oil on Canvas. 30" x 24"

Jacob was diagnosed with Neurofibromatosis Type 1 as a baby. Having this disease has been difficult for him at times, but it also had made him who he is today. Jacob went through a number of clinical trails as a child to try to reduce the size of one of his tumors. He had to spend a lot of time at the National Institute of Health (NIH) where he had to get a variety of different tests done every 3 months for a few years to monitor the tumor growths. As he got older none of the clinical trails he had participated in worked, so now he just gets checked up on once or twice a year to make sure there has been no growth or any additional tumors that have shown up.

Prep Sketch for "Jacob on a Photo Shoot"

Jacob lives a pretty normal life where he lives with his girl friend and his dog. He works a 9-5 job and does photography on the side in hopes to pursue photography full time one day. Jacob deals with pain occasionally, but does not let it affect his day to day life. He has always lived by the motto’s “Survive and Advance” and “Built Different.” Jacob helps raise NF awareness around the Kansas City area by participating in the Shine a Light Walks with all the proceeds going to help the Children's Tumor Foundation.

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.”

Case Study #109 - Cody Serving it Up

"Cody Serving it Up" 30" x 24" Oil on Canvas

At age 35, Cody Eaves, a manager at a local bbq restaurant, was diagnosed with NF2. After a trip back to the dentist office thinking the numbness in his mouth was from a recent root canal, but instead, an MRI found bilateral acoustic neuroma.

He ended up having brain surgery at age 36 to remove the 2.7 cm tumor on his left auditory nerve, which left him deaf in the left ear, with with some facial paralysis.

The news of his new diagnosis of NF2 prompted some lifestyle changes. He picked up running, and lost over 50lbs. His wife jokes that they must have crossed some wires around during surgery. He’s completed multiple half marathons, a half Ironman, and has just finished his 7th marathon, with no end in sight.

Prep Sketch

Cody says although he would not choose to have NF, NF has given him a better outlook on life. He thanks God for everyday he gets to spend with his family and friends, and the ability to run for the NF Endurance team to raise awareness for a cure.