Case Study #104 - John Lighting the Stage

"John Lighting the Stage" 30" x 24" Oil on Canvas

John was diagnosed with neurofibromatosis (NF 1) at birth and is the only one of his parent’s three children to have it. He inherited it from his mother, and she from her father.

As John went through grade school, it was discovered that he required an exceptionally long time to complete his homework, especially assignments that involved a lot of reading or written essay type answers. His learning disability, though perhaps mild, has been present enough that it has always affected him through school, college, and in his working days, all leading to social and career shortcomings. John has a somewhat slower processing speed, trouble learning and remembering new information, and trouble organizing and verbalizing his thoughts. Neuropsychological evaluations have noted findings consistent with diagnosis of a learning disorder.

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In 2005, an MRI revealed a small cystic lesion, likely a pilocytic astrocytoma, in the pons of the brainstem. Though seemingly asymptomatic for years, it warranted follow-up MRIs every 6 to 12 months. Each scan showed about the same as the previous one: very slight growth of the pontine cyst but otherwise unremarkable and no new apparent problems -That was until early 2013.

His neuro-oncologist, Dr. Paul Moots, prescribed two different types of chemotherapy pills that year, followed by radiation treatments in the Spring of 2014. Nevertheless, the cyst continued to expand and by now was compressing onto the brainstem. It was around this time that John began having problems with his balance and difficulty walking. A sensation of tingling numbness that started in his right fingers slowly worked its way up further into his hand; then by late 2014 his right arm, leg, and foot too. A simple task such as picking-up an object or buttoning a shirt became a challenge. His handwriting was now atrocious. He was also beginning to experience double vision. Something more had to be done.

John had two craniotomies at Vanderbilt in the Spring of 2015 to remove the pontine cyst; what his neurosurgeon would describe as “an incredibly complex neurosurgical problem”. This was followed by an intense headache which prompted a third hospital stay and a diagnosis of meningitis.

NF doesn’t really affect him much in a physical way, at least not in terms of pain, mobility, or appearance. He has some café-au-lait spots and couple other bumps. The double vision in his left field of view remains. There is also a long surgical scar on the backside of his head that can easily be covered-up with hair. His main concern now is in trying to better understand how NF affects him in more cognitive, expressive, and semantic ways or if there is something else at play too.

For the past 15 years or so, John has volunteered with a local community theater, the Oak Ridge Playhouse. His experience includes over 40 productions, working backstage in any one of a variety of positions: stage manager, assistant stage manager, follow spotlight, light board operator, deck crew, and the props team. John’s favorite position for musical productions is operating one of the spotlights in the theater’s catwalk. From this somewhat-private balcony vantage point, he can contribute directly to the show with the added benefit of viewing the show. He is a self-described “spotlight hog” -only not in the light, but behind it.

John is appreciative of Rachel Mindrup’s artistic talent and thankful to help shine a light on NF.

Case Study #105 - Elizabeth Enjoying the Kentucky Derby

 

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Elizabeth Keller is from Louisville Kentucky. She was born with NF and inherited it from her biological mother. She was adopted at six weeks old. Over the years, Elizabeth has had 5 surgeries to remove some of the painful tumors. One surgery was when she was a toddler to remove a tumor in her groin area, twice when she was 13 to remove tumors on her knee that grew back and at 16 to remove some tumors on her back and arms. Besides tumors, NF causes migraines. Some of her tumors are very painful even to the touch. Because she was adopted did not know anyone else with NF until she became and adult and found various Facebook communities.

Raising NF awareness is important to Elizabeth because she wants the unaffected population to realize that it is a genetic disorder not a contagious disease. She has had many hurtful stares, people pointing and saying hurtful things to her. Her boyfriend and her son, who does not have NF, continue to be her strength to persevere. She has participated twice in the Cupid's Undie Run held in Louisville, Kentucky and was the 1st place individual winner for highest fundraiser one of the years. In her free time, Elizabeth loves to create realistic zombie make up and costumes and show them off during Halloween.

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.

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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.

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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.