Case Study #16 - David Preparing BBQ Beef Brisket

David Preparing BBQ Beef Brisket. 30" x 24" Oil on Canvas.

Chef David Gladyness has NF but it certainly doesn't slow him down.

David inherited his NF from his mother's side of the family: his grandmother, his mother, and four of his mother's siblings, four of his cousins,  one of his brothers, one of his brother's children and both of her children all have NF. In David's words, "I decided not to have children, I knew I had NF at the age of 5, but was not officially diagnosed until I was 18, I had a tumor removed of of my left hip and it grew back but it doesn't bother me as it had in the past. Two years ago I had major surgery and spent 15 days in the hospital and was diagnosed with Neuroendricine cancer. I had a Whipple surgery, They removed my gall bladder, the head of my pancreas, 17 inches of my small intestine and 20% of my stomach. Growing up my major issues was a speech impediment."



Prep Sketch for oil painting

David is a culinary trained chef. He got his love of cooking from his father who was born and raised in Louisiana. As a child, he watched his father prepare family meals which including the cooking of wild game and domestic animals. It is not surprising that David's favorite cuisine to prepare is Cajun or Creole. His love of cooking had him return to school, as an adult, to link his passion for food preparation with his natural creative spirit. Prior to culinary school, he had always enjoyed cooking and would attend food fairs and how-to seminars. At some point, his wife finally encouraged him to attend. While there, he had the opportunity to travel to France to cook for the stars in the American Pavilion at the Cannes International Film Festival. It proved to be an amazing time. People always ask David what he likes to cook. His reply is simply, "I enjoy the Savory more than the Sweet."

Besides going to Washington, D.C. to lobby for fund for NF research, David is also very instrumental in running and organizing several different NF camps for kids, one in Michigan and one in West Virginia.

Case Study #14 - Juan Practicing Taekwondo

Juan Practicing Taekwondo - 30" x 24" oil on canvas

Juan Rodriguez was born in Massachusetts and at birth he was diagnosed with Neurofibromatosis, due to many café-au-spots. Problematic and heartwrenching for his mother was the fact that Juan's right leg snapped in two due to a tumor that had grown inside of his bone. After his leg broke, he had to have a double operation which involved removing two ribs to try and replace his right tibia. The procedures were done at two months and again at six months old.

As a child growing up Juan was not allowed to play due to the cast that was on his leg that reached up to his hip. The doctors explained to his mother that the operation they had preformed, might not last long and amputation might be an option.

In his later teenager years Juan had many troubles. Teenagers made fun of his leg and underestimated him; believing he was weak. These same teenagers also made fun of the bumps (tumors) that he had growing all over his stomach. While Juan heard all sort of jokes about his tumors, such as "connect the dots", "looks like mountains", and other cruel jokes, Juan decided to do his best to excel in sports, and in this way he could hide his tumors with his clothes.

Prep Sketch - 30" x 24" Oil on Canvas

In September 2013, while in his mid thirties, Juan joined Taekwondo, mostly for joint relief, as he had had problems with mobility, stiffness and pain. Juan hopes to someday achieve his black belt in Taekwondo.

Juan in the past has help spread awareness of NF awareness through the Childrens Tumor Foundation (CTF) in New York City by participating in two of the Cupid Undies Run Fundraiser runs, and casino night. He looks forward to doing more work with the CTF. Recently, Juan spoke about NF at his alma mater, Essex County College, in Newark, NJ helping to educate a class learn about the disorder; a disorder that affects so many people worldwide.

Case Study #15 - Krissy Painting at Night

"Krissy Painting at Night" 30" x 24" Oil on Canvas.

Krissy Diaz was diagnosed with NF2 (the first case in her family’s history) at age 8. The early symptoms of NF2 are symptoms of dysfunction of the acoustic (hearing) nerve, which carries information about sound to the brain, and the vestibular nerve, which carries balance information to the brain. Consequently, hearing loss, ringing in the ears (called tinnitus) and problems with balance, beginning in the teens or early twenties, are generally the first symptoms of NF2.

Although tumors on the eighth cranial nerve are most common, persons with NF2 can develop tumors on other nerves as well. Other symptoms of NF2 may include facial weakness, headache, change in vision, and a lump or swelling under the skin caused by the development of a neurofibroma. In a family member at risk for NF2, a positive diagnosis is suspect if mild signs of NF are found elsewhere, such as one or two café-au-lait spots or a small lump under the scalp or skin.

Prep Sketch for 30" x 24" oil on canvas

Krissy has kept her love for art and earned her Master of Arts in Creative Arts Therapy as a means to give back and help others. She has developed and implemented Art Therapy programs at the Queens Museum Art Access program for deaf school-aged children in her graduate research study. She continues to provide art therapy with both hearing and deaf communities with mental illness and developmental delays. Kristina has also been proactive in the NF community by fundraising while running in many endurance events (Half Marathons, 10ks, 5ks) and connecting with the NF community by forming friendships and support. She is an advocate for similar causes such as St Jude Children’s Research Hospital and the American Cancer Society because she understands on both physical and emotional levels what it means to struggle with chronic illness from a young age and maintaining quality of life.

Case Study #13 - Honor Dipping Guacamole

"Honor Dipping Guacamole" 30" x 24" oil on canvas

I met Honor a few months after the Cupid Undie's Run in Omaha. She lives in Council Bluffs and has NF. She participated in the race with her niece and together the two of them raised over $1500 for the Children's Tumor Foundation. It wasn't until she saw the Omaha World Herald article that Casey Logan wrote about my painting project that she connected with me through Facebook. We met for dinner at La Mesa's, a Mexican restaurant near my house and enjoyed enchiladas and margaritas. It was nice to meet someone who understood and who has lived with NF. Someone you can swap local neurologist and neurosurgeon stories with.

About a month later, she dropped me a line and we met for dinner at Chili's. I cajoled her into the idea that I should paint her portrait in oil. Although, I didn't realize when I proposed the idea just how much she enjoyed fresh guacamole dip. I had originally planned on painting her doing something else like reading a Stephen King book or something. She then mentioned that the guac dip was the real reason for meeting at Chili's (my company was most likely second to the fresh guac dip! haha). I told her to eat naturally as I started clicking pictures of her dipping tortilla chips into the bowl. The people around us started murmuring wondering what I was doing and what was going on with all the photos. I had to get out of our booth and walk around getting all sorts of different angles of her dipping the chips. Our waiter seemed to think I should want to paint his portrait as well or maybe that is just the way waiters try to get better tips. I just smiled and joked "Maybe some other time, for now, I'm interested in Honor and that dip."

Here is the main reference photo I will use,
although I'm going to turn her head and have a more 3/4ths view.
Please note the margarita--I think I will omit that in the painting...haha.

We both talked a long time and enjoyed our dinner. Additionally, Honor is planning on joining my Many Faces of NF 2015 team next February and already has ideas about what our costumes should be. I'm going to let her coordinate that...and I'll just keep painting and just wonder what in the world I shall embarrass myself in next winter!

About NF in Honor's words:

I was diagnosed with NF when I was six years old.  I didn't really start having any problems with it until I was in my 20's, that's when the tumors started showing up. When I was in my 30's I had to have a surgery on my neck to remove one particularly large tumor that was growing into my spinal cord. What started out as a 6 hour surgery turned into a 10 hour surgery as the tumor was much more involved than they originally thought. But they got it all and I haven't had problems with my neck since then. In the last year I have had 5 surgeries to another large tumor that was growing on the outside of my shoulder and several small tumors from my hands, arms and the bottom of my foot.

I'm lucky enough to have an amazing group of family and friends who have been very supportive through all the surgeries, MRI's and many doctor appointments.

Even with all that, I've still had lots of fun, like running in the Cupids Undie Run which raises money and awareness for NF. Together my niece and I raised $1,500.00 which I was really proud of. Plus the added benefit of making new friends. I can't wait until next year, I'm already planning my crazy undie outfit.

I also love to travel. I've been to Minnesota, Savannah, Lake of the Ozarks and New Orleans. My favorite place was Estes Park in CO where I got to attend the Shining Ball at the Stanley Hotel over Halloween weekend.  I think I even heard a few ghosts.  But my dream trip would be to Ireland. We have traced our family tree on my dads side back to County Sligo and I would love to go see where it it.

Overall I dont let my NF get me down, I just deal with any issues that come up because in the end NF is what I have not who I am.

Case Study #11 - John Chatting on Ham Radio

"John Chatting on Ham Radio" 30" x 24" oil on canvas

John Walsh has been very active in the NF community. His son, Patrick lost his battle with NF related cancer on 6-21-2010 when he was 33 yrs old. John has NF and does his daughter Jennifer Walsh. Patrick use to say "Keep up the Fight." and that is what John and his family have been doing ever since. The Walshes have been very active at NF events in the New England area. Their daughter Jennifer has been doing a fundraising bike ride for a few years now raising well over $13,000.00 for NF.

John's Story in his words:

My parents and I first learned that I had NF in 1957. It was not called NF at that time it was called Von Recklinghausen’s disease. It was that year that I had my first tumor removed. It was on my collar bone. I have one brother four years older than I and he does not have NF. My Mom and Dad also do not have NF.

Prep sketch and underpainting for
John Chatting on Ham Radio - 30" x 24"

Over the years I would several have more remove from other parts of my body. The doctors told us only to have them removed if they bothered me. I can remember some kids in school remarking about these big lumps on my arms, some wanted to know if they could catch it. Being a kid myself I use to tell them that they were African Mosquito bites. I knew what I had and at times had to inform the school doctor when he came around the schools for our yearly check ups.

Other than the few operations that I had to remove tumors, I made it through school OK. It was 1969, I was graduating from high school and the draft was on. I was a low number and felt that I should go sign up and serve my country. I had a background in electronics and had my Ham Radio License. I took a test at the military base and they told me they would send me to radio school. I was glad to hear that news. They then sent me for my departing physical. As soon as the doctors seen me they said I could not be in the military because of my condition. I was kind of let down felt rejected or less than. Most guys in the 1960’s were trying to get out of the draft, Strange me wanted to join and see some of the world. This was my first big let because of NF.

I then went into a local electronics school for two years 1969 to 1971. When I finished school I started my own business installing security and fire alarm systems. In 1972 I married my bride Gladys. Through this work I did knew people on the Fire Department and heard that they were hiring. I filled out the application and I got the job as a Firefighter that was in 1973. I still ran my business part time. Also that year I took some classes and became an E.M.T. I was thrill, despite my condition I was moving forward in my life.

In 1974 my wife Gladys and I had our first child a little girl we named Jennifer. Then in 1977 our son Patrick was born.
 

Patrick John Walsh - In Memoriam

While I was on the fire Department I did have a few tumors removed that bothered me while I was doing certain types of work. I was always back to work in a week or so. In 1980 I had some friends that were in the National Guard. They ask me to join too. I told them what had happened in the 1960.s where I was refused do to my medical problem. They told me to give it a try. So I signed and I got accepted in the Army National Guard. I was sent to Fort Sil, OK for basic training. I went through basic training at 30 years old with tumors showing on my body. I made through basic training without any problems. I then came back to Massachusetts to serve with my unit. Within 2 yrs I made it to E-5 Sergeant. I was very happy I had a good job as a fire fighter / E.M.T. my military and a nice family. In 1983 I was having a problem with tingling in my hands and weakness grabbing things. I went to several doctors and they could not find anything wrong with me. I knew something was not right and I was able to get into Mass. General Hospital to get checked out. They found my problem the first day there. I had a tumor between C1 and C2 on my upper spine. They told me that they had to operate right away. I could move the wrong way and the tumor could cut off some major nerves in my neck area. The operation went well removing the tumor and preventing further damage. After the operation I had very limited use of my arms and hands. Because of this I had to give up my job as a Firefighter and E.M.T. I also had to leave the National Guard. All that I loved doing was gone from my life. 

I also had to sell my alarm business, because I could not work. I was told that I was permanently disabled. I did collect for a while and kept forcing myself to do more. I was finally able to get a light duty job in a factory repairing machines. This condition was not going to keep me down. I would have more tumors removed during the 1980’s each time I worried what would happen if I could not work again. I found an answer to this and went back to school part time 1993 while working full time. There were many things going on in my life and another disease that I have started to kick in big way. That was my alcoholism. I drank very heavily for many years and I was not only hurting myself but also my family and friends. I finally realized that this was not an answer to my problems. It was only creating more problems with my health and my family and friends. I stopped drinking in 1997. I did try AA, but for some reason it did not work for me. I just had to wake up and see what was going on in my life and those around me. Our son Patrick told me just before he passed away in 2010, that he was proud of me for not drinking with everything that was going on with him. In 2002 I earned a B.A. from the University of Massachusetts. Through those years I would have several more operations. During one operation to remove a tumor from my leg, that was going to be same day surgery, I woke up 3 days later in the I.C.U. I had another type of tumor on my pancreas called a Pheocromacytoma. I was told they lost me on the operating table and had to bring me back. This Phoe tumor was removed a few weeks later.

John Walsh - Many Faces of NF
Watercolor portrait

In May 2013, I went to Massachusetts General Hospital in Boston to have 3 NF tumors removed. One was on my lower back just up from my tail bone and it was about the size of a golf ball. The other 2 were about half that size and were on the back of my left thigh. The surgery went well. I asked the Dr. if he could send these tumors off to the NF Lab for research and he said “yes.” He told his nurse how to prepare them and how to send them to the NF Lab. So now they have 3 tumors for more research and testing.

At this time in my life I am still able to work in the maintenance trades. If anything happens I do have my B.A. in Sociology / Social Services where I can use my mind if I cannot do physical work anymore. I do have some tumors on my body that give me pain. The worst one is on the sciatic nerve in my left hip. At times it gives me great pain mostly it happens when I sit for over an hour and a half. I have been told many years ago that it is inoperable.
 
For now I mainly worry about Jen and all others suffering from NF. I also have to worry about Gladys as she has to deal with the loss of Patrick from NF and I worry about Jen each day. I hope that the doctors and research can help all of us with NF and that they find new methods to help all those with NF and their families. I’m hoping that the research that I was part of will help find new methods for treating those with NF.

Case Study #12 - Garrett Drinking a Slurpee

"Garrett Drinking a Slurpee" 30" x 24" oil on canvas

I met Garrett through Facebook and was absolutely horrifed when I saw him posting about when hospice would be coming in to help ease his pain. I'm not sure an oil painting really eases anyone's pain, but I have never felt a sense of urgency as I have with this painting. I want Garrett to see all of the different stages and enjoy the final painting. These take me a very long time to do, so I guess that just means Garrett will have to tell the hospice workers they aren't necessary right now.

In Garrett's words:

This is Garrett and if it were not for NF2, I would not have a caringbridge site. NF2 is short for Neurofibromatosis Type 2. This causes benign tumors to grow on various nerves throughout my body. People with NF2 always have these tumors on both the left and right vestibular nerves. The vestibular nerve is part of the acoustic nerve so we usually have little or no hearing. I have no hearing on my right side and only 50 percent hearing on my left side. I have several tumors in my brain and dozens of tumors up and down my spine. I also have these tumors on my arms, neck, side, and back. That's enough about NF2 for now.

In Garrett's Dad's words on June 30, 2014:

Preliminary Sketch

We want you to know it is because of you that Garrett has NOT giving up the fight. He is a true NF2 warrior and he is not ready for hospice to take over. Your encouraging messages have renewed his spirit. It excites him to read and respond to your posts. He enjoys connecting with more people, seeing the run/swim/walk/bike in his honor, chat with friends, talk about sports, gaming and God. The NF2 crew have been an amazing cheerleading squad and he is listening. They understand his life with tumors and pain, and they have been a great source of inspiration. This love and support has given him a HUGE boost.

Today we met with Garrett's primary care physician to discuss our options. We have decided, with Garrett's permission, to give it one more final attempt to boost his immune system. We will be adjusting his pain meds to give him a more comfortable level, and will include home health care to provide a supplemental IV solution to his daily feeding. Garrett has been on minimal medical marijuana for some time, and will have a more deliberate program to see if it will help with pain, nausea and weight gain. He will be sleeping more, but if our efforts work, he might regain some strength and weight to improve his overall health. If we do not see an improvement in the next 6 weeks, we will need to continue our direction into palliative/hospice care.

We do not know how long Garrett will be with us. We know, without a doubt, that God is pleased with Garrett's determination and faithfulness. If he doesn't cross the finish line, we know it is not because he didn't give it his all nor keep the faith. The boy is a true warrior! From now until the AFC half marathon/5k race (August 17th), we are going full steam ahead. Please continue to send Garret encouraging words. He may not respond in the coming weeks if his sleep pattern increases, but please know that our efforts to fight NF2 will continue and we will keep you posted with caringbridge updates.

Case Study #10 - Darren Skydiving in England

"Darren Skydiving in England" - 30" x 24" oil on canvas

One incredible aspect of my project (and of social media in general) is the ability to connect with others globally. I painted Darren Kirk's portrait a few years ago for my Many Faces of NF page. Darren lives in Selston, U.K. I realized he was skydiving to raise money for the Neuro Foundation in the United Kingdom. It had occured to me that at that time that I wasn't really very well informed about NF charities in other parts of the world besides the United States. This prompted me to learn more about the Neuro Foundation and how they help NF families and patients.

A skydive is generally something that people who don't mind taking risks embark on. It takes courage and faith to leap out of a plane and just hope that the people who strapped you into your parachute knew what they were doing. I have no plans of ever doing this. My fear of heights couples with my desire to keep my feet safely on the ground, have always made me admire people who not only take the risk, but apparently find it fun and exhilarating.

Darren Skydiving in England - prep sketch for the oil painting

After some Facebook discussion about the event, Darren informed me that he and his friends managed to raise about £6,000. He also mentioned that not only does he have NF, but both of his sons have it as well, so the jump wasn't just about him, but also a showing of love for his family too. He also organizes NF get togethers, picnics, and bowling nights.

I decided that it would be a great addition to the series to depict Darren doing something more than just a hobby. I also believe that keeping in line with all the paintings of quiet solitude, the painting should depict the quiet moment of right before he jumped out. I would think that is when focus, fear and concentration is at its highest. The moment you know you are going to jump out of a plane. And while I can speak from experience, it must be quite an unforgettable feeling.

In Darren's words:

Watercolor of Darren done for the
Many Faces of NF page

I found out I had nf when I was 27 (now 45) so found school very difficult just couldn't grasp many things. At age 11 I had a deformed chest bone removed only later to find out it was NF-related. It resulted in having a scar from nipple to nipple. I am very lucky that my NF is mild; although I have tumor in my head and while not on the brain itself it has woven itself amongst the fat content that surrounds the brain. My bones ache all the time and I have diminshed concentration and a very poor memory. My main concern now is for my two boys Kieran and Dane who both have NF. They are doing well but Kieran struggles at school. Dane has social problems and his issues can be hard work at times. I've done two sky dives now and raised about £6000. The last jump I got 20 people to participate with me, so I've set up another upcoming jump to help raise more awareness.