Wednesday, May 31, 2017

Case Study #44 - Keisha Swimming with Dolphins

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The 25-year story of Keisha Petrus can be summed up in overcoming the challenges that NF2 threw her way through a multitude of surgical operations, a few radiosurgery sessions and chemotherapy. She was first diagnosed with NF2 when she was 4-years-old through an MRI which showed tumors growing on her hearing nerves. Despite these tumors, Keisha lived a normal childhood until she was almost 10-years-old in 1999. She had her first brain surgery in Los Angeles, Calif., that year. While the tumor on the left side of the hearing nerve was removed successfully, she was left half-deaf and half of her face was paralyzed. Since the first surgery, she had four spinal operations before her death in 2014 – one in Malaysia, two in India and one the United States. She’s also had two radiosurgery sessions in India and underwent experimental chemotherapy at Universiti Malaya Medical Centre in Malaysia. To quote her in her own words, “my duels with NF2 have left me scarred, wheelchair bound and deaf!” 

However, Keisha refused to let NF2 break her or take her down. Indeed, she had a response ready for those who would describe her life as bleak or filled with suffering as she said that "my life doesn’t revolve around the hospital. I have never let NF2 stop me from living my life. To the contrary, I have allowed my condition to provide me opportunities to broaden my horizons, challenge my faith and test my character. So instead of wallowing in self-pity, I embrace adversity to bring out the best in me and overcome the obstacles in my life. Thanks to my condition, I’ve been able to experience the world in a way few people get to see. The fragility of life inspires me to live to the fullest." 

Her quest to live life to the fullest led her to pursue her dreams, from getting behind the wheel and driving as a person with a disability in Malaysia to swimming with dolphins - something she got to do in 2012 when she visited San Diego. Indeed, Keisha did more than just live her dreams, she used her NF2 to encourage people to realize their true potential and to come together and unite in love. As she said in her last public speech before her death when asked to comment on her numerous surgical scars, "I do not see reason to consider these scars a disfigurement of my body. Rather, I choose to see them a testament of how trials and adversity can unite the human spirit. Out of tragedy, my family, doctors, nurses, physiotherapists, caregivers and friends have united time and again to shine forth with the ultimate good within humankind. This is the story behind each and every scar on my body - of a unity of care and love turning tragedy into triumph."

Tuesday, May 30, 2017

Case Study #43 - Avi Processing an Apple Watch Order

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Avi David is in his forties and from Israel. He suffers from NF and has from a small age. He discovered the mutation of the disease: coffee stains (cafe au lait spots) and a number of body lesions. As time went on his condition grew worse, Avi had many large and small lesions on his body. He thinks he hay have inherited the disorder from his mother. He does not have any memory oh his mother as she died of cancer when he was only 3 years old. Thankfully, Avi has a wonderful stepmother who helped raise him. Life taught him that there are no free gifts and in the end you get what you need and not what you want. When he was 7 he underwent the first of two NF-related surgeries on his vocal chords. He had another when he was 15, but neither surgery seemed to help with the tumors and all that ended up as a result was that his voice is now hoarse. He also had many small and minor surgeries throughout the years to remove the neurofibromas. The surgeries were of little success. Avi believes that the worst thing about NF is that people will look at him strangely and are afraid of him simply because of his appearance. He also does not like to take his shirt off at the beach and self conscious. He has yet to feel comfortable removing his shirt to go swimming.

Currently Avi works for a company that sells Apple products. He is in the field of preparing orders and taking orders for Apple for various clients. A year ago Avi made a trip to New York and fell in love with the United States. He wants to move to the United States because he thinks he was born for it. Life is very difficult for him in the Land of Israel. He found many friends who also have the disorder and he got to know, through Facebook, an amazing woman named Rachel who is his inspiration. She encouraged him to send a picture of himself and tell the story of his life. He admires her for all the work she does for the disorder. It will be a great privilege to meet her someday (she feels the same way).

Avi hopes that in the future doctors will find a cure for this disorder and in the meantime the most important thing is to smile as much as possible and adopt positive thoughts: we live only once and always smile even if it is difficult.

Sunday, May 28, 2017

Case Study #42 - Philip Firing up the Grill

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Philip Moss is from Birmingham, Alabama and was diagnosed with NF at the age of 37 following the diagnosis of both of his children in 2012. NF was a completely new term to Philip and the diagnosis was somewhat of a surprise since he has no significant indicators. Since his oldest child has significant tumor issues Philip struggled with feelings of guilt for passing along this condition to his kids.  A condition they will one-day have to consider when planning for their own family.

In retrospect Philip can think of a few clues that could have indicated a need for further tests. In high school he had a tumor removed from his back that was likely only tested for malignancy and nothing else. Philip, like many with NF, often has trouble staying on task and is self-diagnosed as ADD. He was always the shortest in his classes and fact, he took growth hormones through high school. His head is also so big that few hats fit him!

One year following the diagnoses, the Moss family attended the 2013 NF Forum in Nashville where they were all exposed to what this condition means for many and what it could mean for them. Philip and his family are active in the NF community and are eager and happy to share their experiences with others. He loves sharing his story with others and is amazed at how often a friend-of-a-friend gets referred to him. Philip feels fortunate to live in Birmingham where some of the most renowned NF doctors reside. Though he has no tumor issues that require regular check-ups he wants to best treatment possible for his children. Philip’s son is enrolled in a clinical trial through NIH and had significant success in reducing the size of his tumor. Because of his parents advocacy

Since graduating from college Philip has worked on college campuses in three different states. In his current position he works for Mississippi State University in the office of undergraduate admission and scholarships. He enjoys working with students as they are figuring out what they want to become, what college they want to attend, and the opportunities that exist for them to learn and grow in college.

Outside of work Philip enjoys spending time with family and standing over a hot grill with something delicious cooking.

Wednesday, May 24, 2017

Case Study #41 - Neil Cycling the Course

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As a baby Neil Frazer had multiple café au lait spots (birthmarks) that were a concern and on diagnosis proved to be Neurofibromatosis (NF). There were other subtle indications of NF – large head and arm bones that do not extend in the usual manner. None of which were of much concern as a young child. Not much was known about NF then. He was always the smallest kid for his age and and it made him aware of being different or - An Other. Neil had a very delayed puberty which required hormone therapy. Even with the hormone therapy he left high school looking like any other small 12-year-old boy. NF did not really affect his ability to have friends or participate in a wide range of activities. He did graduate high school with a university entrance. At 18 he shot up and grew about half a meter and put on 14kgs. NF is a slow burner and the conditions are progressive. NF has many symptoms or aspects of which he has dodged some – luckily, not being intellectually challenged. Others manifestations were apparent, during his twenties, the café au lait spots faded which was a small mercy because often people thought he was dirty – it’s the small cruelties that hurt. But as the marks faded the fibromas/lumps/tumours appeared and grew and become a nuisance. Neil had the first of the tumors removed in his early twenties. These tumors were on his skull, were in awkward (high wear) positions or unsightly. He was still living a normal happy and well-adjusted life but fretting about his appearance did take up a large part of his mental resources. The staring and rude comments were becoming more frequent. I become an academic exercise and a medical curiosity – my picture was taken by Dermatologists, Neurologists, Endocrinologists, GP’s, and more My Dentist even took a picture.

To say the knowledge about Neurofibromatosis was skimpy would be a compliment. Neil could not get good advice and plastic surgeons often botched cutting off fibromas. He was living a normal existence and was at university and was beginning to establish himself as an endurance athlete and had a wide and solid circle of friends and training buddies. He took his time in graduating but that had more to do with being distracted by running, cycling and paddling around the Indian Ocean. He was happy, if self-sufficient and independent. Neil remains a happy solitary but engaging. He did have girlfriends and normal relationships but was very aware and self-conscious especially of his torso and back which remain his most affected areas. He did marry in my twenties but that marriage was very short lived and a primary reason for the divorce was the NF and the possible impact on the future and any possible children. It was sad but ultimately a disruption that led to better wife and a more balanced perspective of NF and life. 

Neil has long since loved being underestimated and proving his abilities to doubters. In his early 30’s with a brilliant new wife in tow – he left SA to work in the UK. It was here he met Professor Ferner, the head of Neurology at Guys, St Marks in London. Prof Ferner made him feel understood (Psychologically more than anything else). The explosion of knowledge was very rewarding. Prof Ferner remains a leading NF authority. Plus, she was kind and treated me like an intellectually sound individual. THE NHS were brilliant in managing his NF although the knowledge and experience is still very limited and even their surgeons or specialists were hesitant to operate or “cut” because they had no experience – Neil remains a medical curiosity to this day. By now he tell doctors stuff they are guessing. 

Neil returned to South Africa in 2002 – with his wife and 2 beautiful kids and was ready for the challenges his country likes to pose. This is when the management of his NF become more complex MRI’s, bones, gastro, and lots of cutting. He had found some great doctors, Dr Richard Brink his physician does a brilliant job cutting of fibromas. He recently had several cut off his face and the scars are almost invisible. Dr Lia Mavroard is a fantastic neurologist. 

They say "NF warrior" and they are right – it's warrior class and he is a 52-year-old last man standing gladiator. It’s about confidence and a never ever say die attitude. Luck is a critical factor and his primary luck is having an immense support structure built of a wife, family and a select group of friends. It’s is his impenetrable shield as a warrior – they fight for me, defend me and never let me believe that I am anything but vastly superior. It is vital as an NF sufferer to have a support structure – it is the sacred foundation upon which NF can be dealt with for a lifetime. You need the experts, The Prof Ferner, The Richard Brinks and the Lea Movroardis, Dr Barrows these and other kind and committed medical practioners. The number of times my results have been sent to the medical panel or the weekly discussion board are too frequent to mention. But there have been some unkind, uncaring and stupid doctors. You need love, a wife, special kids, a family, friends and reading, traveling and maybe a hobby. Cycling is his perpetual mistress and largely carved his identity into the bark of the world. It is the pure joy of moving fast and looking like everyone else because at speed we are all blurred. It’s because it’s outdoors. The sheer pleasure of pitting a racing heart against a raging hill is an undying love. 

Neil also enjoys being with like-minded people and watching the sunrise start the day. He was a sponsored athlete in a sponsored car. He has done thousands of races including 7 Cape Epics. He has been to the 4 corners of the world on his bike and he doesn't see himself stopping anytime soon. He has created mountain bike clubs, written for magazines and enjoys some infamy in the cycling community. It proved that he will not be limited. 

In 2009, Neil had a horrific crash and rolled his sponsored Fortuner 6 times and obliterated everything in the car including himself. He escaped by a miracle of athletic conditioning and luck. He was really fortunate (pun) to survive and his ability to fight against NF helped his fight against dying from injuries and infection. In the hospital, Angels came to collect him and it was an attractive offer with a bonus plan and a nice house but I said I had things to do and promises to keep before he died. One was to raise his children, another was to ride with a dying friend across South Africa in the Jozi2C and another is to help others combat NF. A friend said, “God wants you to do stuff, don’t waste the chance”. Today I start by being an NF fighter.

Saturday, May 20, 2017

Case Study #40 - Brian Reading a Mystery Novel

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Brian Peterson was born in Des Moines, Iowa where he lived there until 1993 when his family relocated to Cincinnati, Ohio. When he was 9, Brian was diagnosed with Neurofibromatosis (NF) type 1. Brian's family ended up returning to Iowa after 2 years. due to complications of NF.

At the of 4, Brian competed in the Special Olympics. While growing up, Brian had never met anyone with the same disorder. He faced many challenges growing up with NF1. He had many learning disabilities, including attention deficit hyperactivity disorder, along with a speech impediment. During adolescence, Brian suffered trauma from a brain injury, which lead to the discovery of a tumor on his brain. He had always struggled with severe anxiety. He fell into a deep depression and at the age 13. Brian attempted to take his own life. NF also caused other physical issues such as deformed and weakened bones. Brian has had broken fingers, wrist, leg & ankles, and endured an ankle replacement surgery. He also has had tumors removed from his heart and brain.

Brian always felt like an outcast. He struggled to make and keep friends. Not being able to cope with NF, he often acted out in defiance. Bullies terrorized him. Brian was once jumped on the way home while riding the school bus. He was beat with chains while another teen stomped on his head, resulting in a concussion. By 10th, grade Brian had become disconnected from others, often not speaking.

Brian struggles to get and keep jobs. The anxiety caused by others staring at his facial tumors as well as his hands tends to affect his work. In addition, NF has caused issues with Brian's mobility, such as being unable to stand for long periods of time.

When he was 24, Brian married the love of his life, Kristen Peterson. They currently live in downtown Des Moines. Brian has been an advocate for NF for many years and is currently involved in many of the Children's Tumor Foundation's awareness projects including the upcoming NF walk held in Des Moines.

Wednesday, March 8, 2017

Case Study #39 - Larry Shopping for Grapes

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Having NF as a child, had its struggles. Larry was made fun of a lot for being short and skinny. The scoliosis made him shorter than others in school so they pushed him around. Back in the 60’s, he just had to deal with it, he didn’t dare report it or his life would have been worse. He also struggled in math. He had bad memory problems and still does. He just never could understand and get it. He was so excited when he graduated and was done.

Larry's mother passed away a year after he graduated high school. She was 45 and he was 17. She was a quiet lady and never discussed NF with him. She had fibromas all over her body. Larry knew he had it too but didn’t ask her as she avoided the conversation. When he was in his early teens, his mom was diagnosed with breast cancer, she waited too long for treatment and it eventually took her life. Larry lived with his sister for about a year after their mother's death, until he found a job and apartment. He is thankful that his sister does not have NF. She really helped him transition from being a young teen to living on his own at 18.

Larry didn’t start getting fibromas on the outside of his body until in his 20’s. Scoliosis had a major impact on his life so any type of sports were out of the question. He found a great Neurologist that knew all about NF and understood the problems people can have with it. He started taking x rays and MRI’s of his back and brain. He prescribed me some medications to help with the pain and a brace wrap to help with support since it appeared his ribs were supporting his scoliosis at an 80 degree curve which is why he was hurting all the time. Any corrective surgery was out of the question, it would be a high risk since he has a meningocele on his spine. I have to be really careful, the doctor said not to fall, sneeze or cough hard, not wanting the meningocele to leak spinal fluid. The brain MRI discovered UBO’s in his brain (Unidentified bright objects). They say all of us with NF have UBO’s, they just have no clue what they are. Also at the base of his brain and spinal cord there is a Posterior Fossa Arachnoid Cyst. Larry gets tired and short of breath if he stands for any length of time or walks. His ribs hurt due to the scoliosis. He uses a cane for support, helps some take the pressure off. For any distance he uses a power chair, at the store or at the park.

Larry got married at 25, and had a daughter a few years later. He was so glad she was born without NF. Sadly his marriage ended a few years thereafter. A year after his divorce his ex-wife was diagnosed with MS and she passed away 10 years later. Larry remarried and had another daughter with his second wife. She also doesn’t have NF. Sadly, his second marriage ended after 12 years. Being depressed the he would never find anyone, he found the Children’s Tumor Foundation's website. They had a link where there were others that had NF like him. He talked with others and found comfort as they all understood each other. Then there was one lady, Joan, they connected. She lived in PA and he lived in MS. They started talking on the phone, and he made a trip up north to see her. A year later she made the big move to the south and year later they were married. Larry is thankful for her. They are both involved in the "Great Steps for NF" walks put on by Neurofibromatosis Network. They have participated for four years and plan on continuing to raise NF awareness.

Thursday, February 23, 2017

Case Study #38 - Cecile Playing Badminton

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Cecile Hernandez Pesayco from the Philippines was was born with a lot of cafe au lait spots on her skin. As a child, she was very active and loved playing and running around. Sometimes she experienced severe headaches that made her stop what she loved to do. When Cecile was 13 years old she noticed lumps starting to grow on her skin. As she got older, the lumps started to grow in large numbers. She doesn't have NF only on her skin but under her skin as well. The tumors under her skin got bigger and started pressing some nerves which makes living with NF painful. Doctors said the tumors have to be removed. She has already had 8 operations to removed those specific tumors. Some of them turned out to be malignant and needed some radiation. None of that stopped Cecile from living a normal life and from doing the things that she wants to do.

As Cecile looked for answers to what Neurofibromatosis(NF) really was, she found not just an answer, but a friend, Kcat Yarza. She also has NF and together they formed the group NF Friends Philippines which has over 100 members including parents of children with NF. They try to support each other by focusing on the blessings that they receive each day and hope to raise awareness about the disorder. Despite the nerve damage NF has caused, Cecile loves playing badminton and she plays it almost everyday!