Case Study #103 - Mark Petting Misty

"Mark Petting Misty" Oil on Canvas. 2021. 30" x 24"

Mark's NF diagnosis came about through an unusual way. He had twisted an ankle pretty good and stopped in at his doctor's office to see if he could get in. He’d known for years something was going on with his body but his doctor couldn’t pin down what it was. The administrative secretary's nephew had come for a visit and stopped by the office to just say hi that same morning. He had a more severe case of NF and his doctor immediately made the connection. He came into the exam room where Mark was sitting and said “I know what you have.” Mark was dubious thinking “Yeah, a bent foot.” That was the day he received his diagnosis.

Prep Sketch for "Mark Playing with his Dog"

NF didn’t bother Mark much for quite a while. He was able to be real active in Search and Rescue for twenty years but did have to give that up as things with his NF progressed. Mark is one of the lucky few with NF2 who are fairly mildly affected. NF has taken far too many of his friends. He can still do most of what he wants, just some slower, but overall life is good.

Mark's connection with NF goes well past his own diagnosis. Mark met Marcy and Jay on an NF bulletin board years ago. This mother and son also had NF and the three of them became online friends. After a few years of Mark complaining about the winter they invited him down for a visit. They all hit it off and it became a yearly tradition. Two days before Mark's 2019 visit Marcy called and informed him that Jay was in the emergency room with a suspected stroke. Mark responded immediately and got his flight changed and came down the next day. When he got there they were transferring Jay to another hospital where he was diagnosed with the GBM tumor. Mark's three day visit turned into a three week visit while Jay had surgery and began his rehabilitation. Jay asked Mark if he’d stay and help his mom care for him. When Jay was stable enough Mark flew home and loaded up his car and came back. Jay had lots of doctor visits as well as home care professionals. Just short of a year after diagnosis the family lost him. One of the last things, Jay made Mark promise was that he’d stay and watch over his mom. He was more worried about her than himself. It was easy for Mark to say yes. The three of them all got along so well that Mark feels like they are family.  Although Mark never wanted to have kids from the time he met Jay,  he’d have been proud to call Jay his son. In Mark's words, "I can’t describe how great a person Jay was."

As to Mark's NF2 diagnosis, for a lot of years it was thought to be NF1 until his acoustic neuromas finally got big enough to identify as such. They’d shown up on MRI’s for some time but were too small to identify as such. They still real small as of my last one so I’m happy to leave them alone as long as they don’t bother me too much.

Case Study #100 - Robby Broadcasting Hockey

Robby Broadcasting Hockey - 2021 Oil on Canvas. 30" x 24"

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. 

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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.

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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

 

"Seth Playing the Piano" Oil on Canvas. 30" x 24" 2021.

Seth Gregorash is in his early 20s 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. 

Prep Sketch

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.

Case Study #95 - Ricky Preserving Liberty

"Ricky Preserving Liberty" Oil on Canvas. 2021

Ricky was diagnosed with NF1 at just six weeks old. When he was a child he was a poster child for the then Massachusetts Chapter of the National Neurofibromatosis Foundation. While his symptoms aren’t as obvious as others he has had his struggles too. He spent years in speech, occupational, and physical therapy to help with speech and motor issues. While in high school some of his motor issues were obvious while he was running track, most runners look nice and graceful, Ricky however looked to lumber as he ran. 

After high school, Ricky attended Westfield State College in Massachusetts and got a major in both history & political science. While in college Ricky started to be more accepting of his NF and started doing public speaking raising awareness for the disorder. After college Ricky joined his mother as a member of the Boston Gala Committee eventually serving as a co-chair which then led to him joining the Volunteer Leadership Council of the Children’s Tumor Foundation. 

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Outside of NF activities Ricky is happily married and is a member of the Civil Air Patrol in Massachusetts Wing having served in many positions ranging from Squadron which is a local unit to Region which oversees multiple states. He’s earned his Master Rating in Aerospace Education and Safety. He is also a member of the Knights Columbus where he has been a Faithful Navigator, Grand Knight, and District Deputy. He has also served as Color Corps Commander overseeing important ceremonial activities in the Knights of Columbus.

Case Study #94 - Jay Never Giving Up

"Jay Never Giving Up" 30" x 24" Oil on Canvas.

Jay was born in September 11, 1984 and diagnosed in March of 1986 by the craniofacial team of CHLA - Children's Hospital of Los Angeles with NF. His doctor was Dr. Larry Nichter who the family then followed to CHOC (Children's Hospital of Orange County). 

When Jay was in first grade he was featured in an article with his mother to help spread NF awareness. It was his second time spreading NF Awareness for the NF Inc. Phoenix chapter. In 1st grade he did a PSA with the then Phoenix Roadrunner Hockey team. Growing up, Jay would cry and beg his mother not to send him to school. This happened from his baby carrier days, to stroller/toddler days until the 6th grade. His mother gave him sage advice saying "When kids make fun of you and point out things just say 'What good eyes you have. You are going to be an excellent scientist or detective!'" This served Jay well and was a great way to diffuse situations. Middle school was heaven because he was no longer called freak or monster, as he used his humor as a way of dealing with NF. Although one particular incident really hurt his feelings. Many of the school girls kept asking if he was going to attend the Valentine's Day Dance. He and his mother went out and bought a suit. Jay was excited and proud to go only to find out that the same group of girls who were asking if he'd go suddenly did an about face and told him that they were joking and never really thought he would come. Jay was devastated. The school principal was alerted and the girls apologized. In high school, Jay enjoyed swimming and lettered with the Coronado Swim Team.

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As an adult, Jay loved the Philadelphia Eagles football team and WWE Wrestling. At one point he even got received an encouraging video from the Bella Twins while he was undergoing treatments. Throughout his adult life, Jay had his tumors debulked several times. Jay's treatment was always done in Phoenix at St. Joseph's Barrow Neurological Institute. The cyber knife/radiation is run with the University of Arizona. Jay's brain tumor turned malignant and he passed away March 6, 2020. His mother donated his brain at his request to the Ivy Tumor Center so more NF research can be done to help other NF families. The rest of his body was used for surgical research in the orthopedic field.