Case Study #103 - Robby Broadcasting Hockey

Prep Sketch

Robby was diagnosed with NF at birth, passed on genetically from their mother. Robby is the third child of four children. The eldest sibling in the family also has NF as well. Robby didn't really understand it until they regularly started to have scheduled MRI's at around 6 years old. Throughout late elementary school to middle school, Robby was continually bullied for being different. Robby had a big head, was unathletic, had short stature, among other issues. The bullying ended when they became more open about their life with NF and decided to raise awareness. They did this by running a half marathon at 13 years old in the 8th grade. Through that, Robby had a boost in confidence that helped them get through the high school years at Bellarmine College Prep in San Jose, CA. After high school, Robby went on to study broadcast journalism at the University of Arizona in Tucson, AZ. 

Robby is now a digital producer for KCUB-AM, Wildcats Radio 1290, as well as a podcast host for the Locked on Podcast Network, covering the Arizona Coyotes. To this day, Robby and his family continue to be open and spread awareness about NF, and while the family doesn't participate in many races anymore, they are still a big part of the community and are open to sharing their experiences with others.

Case Study #102 - Paul Playing Ball with his Kids

"Paul Playing Ball with his Kids" Oil on Canvas. 30" x 24"

Paul Patterson wasn’t diagnosed with Neurofibromatosis Type II (NF2) until he was 33 years old. However, his story is proof that God has a plan for each of us. Paul and his wife, Jessie, started dating when they were in college. At that time, Jessie was an Elementary Education major; however, she changed majors and stumbled across the field of audiology. She continued to graduate school and while she was running research subjects, she diagnosed Paul’s bilateral vestibular loss. Because he had normal hearing, no imaging was recommended. It was not until Paul was 30 when Jessie started to notice some hearing difficulty, which to her surprised revealed some significant hearing loss in both ears. One year later, Paul was participating in a hearing research study and he found out that the hearing loss in the right ear changed significantly. He finally agreed to an MRI, which revealed bilateral vestibular schwannomas, with the growth on the right being significantly larger than the left side. His neuro-otologist at Boys Town referred to the University of Iowa for management of the NF2. Two months after his diagnosis, he met with physicians at the University of Iowa to discuss treatment options. Given the size of the schwannoma on the right side and a growth they found on his spine, surgery was recommended sooner rather than later. Especially because they were expecting their second child in 4 months. One month later, he had a tumor resection from the right 8th cranial nerve and just five days later they removed the calcified myngioma on T7. Timing could not have been better; Paul was discharged from the hospital just a week before everything started to shut down due to COVID-19. He was also able to recover at home with Jessie and 3-year-old daughter, Alexa before the arrival of their baby boy, Miles. Paul started receiving Avastin treatments every three weeks with the goal to preserve the hearing on the left side and slow any other growths along the central nervous system. He also had an Auditory Brainstem Implant (ABI) placed at the time of the tumor resection in case he does lose the hearing on the left.

Prep Sketch

Since his surgeries, Paul deals with daily pain from the back surgery, as well as pain along his right leg due to nodules on the right sciatica nerve. The nodules on the sciatic nerve are also causing worsening of his drop foot. He wears an AFO to help with the drop foot, but combined with his bilateral vestibular loss, he has a difficult time with his balance. Paul is resilient and rarely lets his diagnosis bring his spirits down. He values his family more than anything, so he doesn’t let his challenges get in the way of spending quality time with his family. The kids love to be outside and play sports, so he cherishes these moments because he knows that this is something that he might not be able to do when they get older. Genetic testing also revealed that both Alexa and Miles have the same genetic mutation. Paul and Jessie know that God has a bigger plan for them. Paul always has the best attitude about everything, and they know that will allow him to be a great role model for the kids, as well as other individuals diagnosed with NF. So far, Paul’s journey has been short with NF2, but he is anxious to help make a difference in treatments. Paul and Jessie are organizing the first #NFStrong walk in Omaha, NE to help raise funds to support NF research. They hope that with continued research, treatment can advance so that Paul, the kids, and others can live a long and fulfilling life doing what they love. In Paul’s case, that is playing sports with his kids.

Case Study #101 - Sidney Relaxing by the Fire Pit

"Sidney Relaxing by the Fire Pit" Oil on Canvas. 30" x 24" 2021.

Sidney was born with five to six Café au lait spots and by the time her parents left the hospital with her she had over twenty. Thankfully, she did not have any learning disabilities growing up. Her parents kept her active in ballet, tap dance and gymnastics to help with strength and endurance. Sidney had her first surgery at 15 years old followed by nearly one surgery every three years. Later on, Sidney was diagnosed with Malignant Peripheral Nerve Sheath Tumor (MPNST) a form of cancer of the connective tissue surrounding nerves. Given its origin and behavior it is classified as a sarcoma. Sidney had resection/radiation to her right lung in 2009. Nine years later, she then then had surgery to her left lung. In 2019, she had surgery to her right lung again, but this time along with radiation. She is now on her fourth concoction of chemotherapy. She been treated in Omaha, Phoenix and Rochester.

Prep sketch for Sidney

Sidney currently works in the Papillion LaVista school district working one on one with special needs children. Sidney stays on top of NF/sarcoma research and follows a lot trending research on social media. She was never comfortable in her skin growing up, but now that she has a seven year old daughter who was diagnosed with NF1 at 4 months old she has come to love herself and she teaches her daughter to embrace her body. Sidney teaches her daughter that, "We are both are special and that our bodies are beautiful."

Case Study #99 - Bea Selling Raffle Tickets

"Bea Selling Raffle Tickets" Oil on Canvas. 2021. 30" x 24"

Bea Swafford inherited her NF from her mother whose NF was due to a spontaneous gene mutation. She died at only 40 years of age leaving six children under the age of 10, two of whom had NF. Bea believes her death was due to NF complications. Bea's dad remarried right away and the family started seeing her stepmother's son's pediatrician who referred her and her 'bad leg' to Seattle Children's Hospital for evaluation. That happened in October, 1970. Bea had many tumors in her left thigh and a bowed tibia. In the beginning, the doctors just wanted to amputate her entire leg but the wrath of her step mom was greater than their limited knowledge. Bea wore an ankle brace until they could find a way to fix her bowing leg. She was 8 years old. April 11, 1972 was the big day and I was in the hospital until the end of May.

In 1972 and during Halloween, Bea had the mass of tumors removed from her thigh. JP Patches, a clown from TV, came to visit us not just Bea, but all the kids in the ward! Shortly after Christmas of 1973 Bea had a second tibia fix.

In between all the surgeries and numerous doctor visits, Bea was an 'average' child with good grades, busy in her church. She truly loved being with her siblings. She made it through high school with only one surgery which was to remove a mass of tumors on her ovary and abdominal cavities. 

After graduation, Bea lived on her own, worked and learned about adult life After a few office jobs, she started working at a steak house where she met her future husband, Phillip. They have been married for over 30 years and have an adult son (who does not have NF) Nolan.

Prep Sketch for Bea
Selling Raffle Tickets

Back in 1994, Bea had a C-spine surgery due to her NF. It nearly paralyzed her. Her hair was past her shoulder blades and her dominant arm had 'shut-down' with the hair as a tangled mess. She had a hair-dresser friend come cut it and wanted to donate it, but it couldn't be untangled. Bea set a goal that if her hair were to grow after the trauma (at neck) and if her arm would work to comb it, she would grow it to her knees then donate it. It took 10 years and 10 months and she was able to donate a 39" braid. Since April of 2010, Bea has donated 96" to Wigs4Kids. This upcoming May 2021, Bea will have her second C-spine surgery.

Bea is very active on social media and tries to share various NF postings from different NF charities. She tries to remind people to "Be Positive!"

On the day I finished Bea's portrait, she passed away due to NF complications. She had gone in to have some tumors removed from her lungs when the lungs collapsed. She was intubated and put into hospice. 

Case Study #98 - Keith Thinking about Life

"Keith Thinking about Life" Oil on Canvas. 30" x 24"

Keith Jones was diagnosed at 8 years old due to his mother noticing a few fibromas on his chest. Keith is not sure of his biological dad's background or that side of his family so he isn't sure if his NF is spontaneous or inherited from that side. He and his brother grew up with a stepfather who was in the military which meant traveling and living in new places including Guam, Utah, North Carolina, Virginia, Arkansas and lastly Arizona where he currently lives now.

Keith graduated in 1988 and worked in a warehouse for years before he got his commercial driver's license. He has been an over the road driver for more than twenty years now. He has three children, two boys and a girl. The two boys, now teenagers, both have NF and the daughter seems to have signs, but no formal diagnosis. Over the years he has had a few fibromas removed and has most of them concentrated in his trunk area and back. Keith receives his care at Thunderbird Family Medicine and Valley Wise Health. Even with some of the minor surgeries, Keith feels fortunate to not have had many surgeries nor the bullying that others with NF have endured. He considers himself blessed.

"Keith Thinking about Life" prep sketch

Keith is looking to be more active in the NF community in Phoenix. In Keith's words, "I don't live with NF. NF lives with me it is what makes me stronger & more compassion towards other elements of life."

Case Study #97 - Seth Playing the Piano

 

Prep Sketch

Seth Gregorash is 21 years old and was diagnosed with Neurofibromatosis (NF1) when he was 6 months old. He was born with a bowed leg, which an x-ray revealed to be caused by Pseudarthrosis; a condition that affects the strength of the bones and their ability to heal. This required him to wear a brace throughout his childhood to protect his tibia from breaking. As he grew, cafe au lait marks began to appear on his body. These “birthmarks” are another symptom associated with NF that helped the doctors confirm the diagnosis. 

Seth’s parents were actively involved in learning about NF and helped him grow up to understand the challenges he may face. In 2007, his family helped start a registered charity support group for Manitobans with NF. Throughout his school years Seth had to take many long trips to doctor appointments and for MRIs to monitor the growth of the plexiform tumor in his chest. This caused him to miss many things like friend’s birthday parties, and made it difficult to participate in events like choir and band concerts. At first Seth enjoyed the “limelight” of being a bit of a celebrity for NF, but as he got older he became more overwhelmed with the inconveniences of NF and just wanted to live a normal life like his friends. 

Seth is a very kind person who will always go out of his way to help those in need. He enjoys graphic design and web development and has graduated from college in this field. With a natural ear for music he is drawn to anything to do with rhythm and sound. He has been playing piano most of his life, played trumpet in the high school band and enjoys “dabbling” in other instruments like guitar and ukulele.

Case Study #96 - Marcy Decorating the Tree

"Marcy Decorating the Tree" Oil on Canvas. 2021

When Marcy was 9, she was diagnosed with Von Recklenhausen which later was renamed to Neurofibromatosis. She didn't really know what it meant as a child and the impact of it didn't materialize until her son, Jay, was diagnosed with NF. Growing up as an only child, she paid attention to what the boys were interested in which gave her a vast knowledge of the various superheroes and comic book characters. 

Marcy graduated from ASU in 1980 with with a dual major in education; elementary and special education. Marcy taught special education for 4 years, kindergarten for 4 years and fifth grade for 5 years. The remaining twenty-two years were in third grade. She taught in the Paradise Valley United School District in Phoenix.

Marcy Decorating the Tree

It wasn't until Marcy became pregnant with her son Jay that she began to notice the affects of NF. Small bumps began to grow during the pregnancy and continue to grow now. She has to wonder if her lack of find motor skills and athletics was also due to NF. Marcy also has epilepsy along with her NF and has had many seizures over the years as well due to epilepsy. When her son Jay was born, he has some outward manifestations of NF that caught the attention of Pat Collins who was the leader of the Phoenix Chapter for NF which was called NF Inc. Now it is called NF Network. Marcy and Jay were both involved in various fundraising and awareness campaigns during that time with this group. Also during the 80's, Marcy was active in raising NF awareness through this group as well as the Order of the Eastern Star (one of the Masonic family groups).

In 2015, Marcy and Jay attended the CTF NF forum in Scottsdale and were able to meet other families and people living with NF. Jay passed away from his brain tumor due to NF in 2020 and Marcy was able to donate his body and brain to continue NF research as his legacy.