Monday, March 19, 2018

Case Study #50 - Amy Creating a Planter Box

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“Hey, there’s Amy ‘My Face is Exploding’ Young!” That’s what some classmates called Amy Young-Ames Reay during her senior year of high school when enormous bumps grew on her face out of nowhere. Amy laughed it off because she grew up in a household full of teasing, sarcasm and jokes, and knew the kids meant no harm. But at the same time, her face was in excruciating pain and the bumps sometimes burst which everyone thought was disgusting. The doctor said it was cystic acne though she later learned those were her first tumors in her nerve endings. 

After high school, Amy had a series of tumors develop and had them removed surgically but was given no explanation. When she was 21, she began having debilitating migraines and balance issues which led to finding her first brain tumor. After it was surgically removed (leaving her deaf in her right ear) and ruled an acoustic neuroma, Amy still was not diagnosed and was scared of the unknown. “What was happening to me?” she wondered. 

A few uneventful years followed and then it was like a storm hit. So many symptoms developed. MRIs found bilateral acoustic neuromas and a spine full of tumors. Amy landed in Boston and was finally diagnosed with Neurofibromatosis type 2 at age 29. Another brain surgery then spine surgery, leg surgery, neck surgery, shoulder surgery. At this point, she has lost count. Two more acoustic neuromas came back so they tried gamma knife radiation twice hoping to save her hearing, but that failed. Fast forward to today: Amy is deaf, has 7 existing brain tumors, 14 spine tumors and more peripheral tumors than she can even count. She has a cochlear implant for sound though there is not enough clarity to understand spoken words. Amy lives with nerve pain every day, frequent headaches, balance issues and deafness. 

But, she is also happy and living a wonderful life. Amy says she is surrounded by many people that she loves that love her right back. She never has to fight this alone. She has her Hearing Dog Delancy by her side always. She is grateful to be alive and thriving. Amy often says, “I may have NF2 but NF2 doesn’t have me.” If anything, Amy feels this illness has made her a better person, more grateful for the little things and with a keen understanding that life is short, be happy. She fights back against Neurofibromatosis by being an avid supporter and participant in Cupid’s Undie Run. She and her team have joined the Boston run and for two years in a row, have been the 3rd top fundraising team. She is personally the #2 fundraiser for Boston and is so proud of that! It’s important to her that she has a good time while making a difference. Cupid’s personifies everything Amy is about....”I want to be known as a fighter but also someone who never forgets to laugh.” I’ve learned throughout my life that crying changes nothing. You have a choice: let illness destroy you or overcome, living your best life. I choose the latter.

Friday, March 9, 2018

Case Study #49 - Krizelle Researching NF2

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Krizelle Alcantara was a 15-year old Filipino high school junior with a keen interest in science when she was diagnosed with NF2. An MRI scan performed after her parents grew concerned of multiple skin and scalp lesions throughout her body confirmed her doctor’s suspicions: enhancement of both hearing nerves and meningiomas scattered throughout her brain – hallmark tumors of NF2. Although asymptomatic, she underwent gamma knife surgery when she was 18 to stabilize her tumors, including the neuroma on her right acoustic nerve which left hear deaf on that ear. She also underwent surgery at 20 to take out twin tumors involving her right parotid gland and masseter muscle, which were dangerously close to leaving half of her face paralyzed.

Throughout her ordeals, Krizelle’s passion in science never wavered. Routine hospital visits for annual checkups, MRI scans, and minor surgeries, as well as studying genetic diseases in college made Krizelle realize that there is still a lot that is not known about NF2 and how to treat it. Particularly in the Philippines, there are no centers specializing in NF2 patient care, nor are there foundations focused on helping people with NF. This gave her the motivation to finish both her Bachelor and Master of Science degrees in molecular biology and biotechnology, for which she investigated molecular mechanisms that contribute to inactivation of the NF2 gene. She presented the findings of her research at the 2017 NF Conference organized by the Children’s Tumor Foundation in Washington, D.C. She also volunteered as a patient representative in the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) international collaboration, a group which aims to achieve consensus within the NF community about the design of future NF clinical trials. 

As Krizelle says “There are plenty of others in the NF community who have gone through so much more than I have. And it is the resilience and strength that I've witnessed in these people that inspires me to keep fighting and keep living. They are the reason why I am chasing this dream of pursuing research to help end NF. It is not an easy battle, but I know I am not alone in this fight. The real Dream is that one day, no person would ever have to suffer from symptoms or loss of a loved one again due to NF.

Friday, February 2, 2018

Case Study #48 - Tiger Preaching to the Congregation

"Tiger Preaching to the Congregation" ©2018 Rachel Mindrup. Oil on Canvas. 30" x 24"
Tiger Coffman was born in Houston in 1972. He has 3 brothers & 2 sisters. At the age of 5 he started playing baseball and fell head over heels in love with the game. Baseball became his #1 love after family.Tiger decided he wanted to be the next Nolan Ryan! Needless to say he's been a diehard Astros fan his whole life. At the age of 13 Tiger was pitching in the last game of the season. He was in the third inning when heard the ball hit the bat and looked up just in time to see the ball smash him in the face. Upon arrival at the hospital he was told that his nose was broken. The doctor did a CT scan. The CT scan which revealed three tumors in his jaw and the Dr asked how long the tumors had been there? This was the first Tigers family had ever heard anything about him having tumors.

After the surgery to fix his nose, they removed the tumors. When he was 15 one of the tumors grew back. The doctor said in order to get this tumor out, they had to break his jaw.
As they were getting Tiger prepped for surgery, they had just started the IV with just saline solution a beautiful, blonde headed lady in white scrubs came to his bedside and asked what he was in for. Tiger told her he broke his nose playing baseball and they found tumors and now have to break his jaw to get this tumor out. She said "God broke your nose!" To which Tiger replied "No ma'am, Hyme (his friend) broke my nose! " she then said, "You don't understand God has a plan and purpose for your life!" Tiger thought she was crazy. The surgery was twelve hours because the tumor was 6.5" long and wrapped around all the nerves on the left side of his face. When the doctor came in he told Tiger he was very lucky because he was born with these tumors but never knew they were there and had he not broken his nose he would not have found them until it was too late because this tumor was 2cm from his brain and he'd have been dead by the time he was 18. He said he has Neurofibromatosis type 1. The doctor told Tiger he would have multiple tumors on his nerves for his entire life. Tiger was then sent to MD Anderson because they were more familiar with NF.

On April 12, 1988 Tiger was invited to a youth service at Metropolitan Baptist Church. The speaker started talking about how God has a plan & purpose for our lives. That night Tiger gave his life to Jesus and became a Christian. About 6 months later he went back to the hospital to talk to that nurse and tell her he was a Christian. The lady who was his nurse that day of surgery told him that No other nurse came into his room that day, she had been the only one. When he told her that this lady had blonde hair blue eyes and was about 5 foot 6 inches tall she told him they didn't have a blond headed nurse work there in over two and a half years. Tiger went and talked to his pastor about this and he said and Tiger believes that that was an angel that God placed in his path to tell him that God loved him and has a plan and purpose for his life.

Tiger's senior year of high school he realized God was calling him into ministry. Tiger decided that professional baseball was no longer his focus, that ministering to young people was his true calling.
Tiger went to East Texas Baptist University got a degree in youth ministry and has been in Ministry since. Tiger has the privilege to travel and speak to church groups, school groups, young people and anyone else who asked him to come share his story.

In 2004 Tiger had surgery, at MD Anderson (one of the best Cancer & Tumor Hospitals in the World) going into the surgery he was told there were three tumors on C 1 2 & 3 but when they cut him open they realized there were 7 tumors from C1 to C7 Tiger was in surgery 16 hours, when he woke up he was basically paralyzed from the neck down and told he would not walk again. But by the power of prayer and the grace of God 32 days later Tiger walked out of the hospital!

In 2005, Tiger's younger brother Sonny passed away in his sleep. He had NF as well. His 2 1/2 yr old daughter found him on the floor. They used to play a game where he'd pretend to be asleep and shed kiss him and he'd wake up and tickle her! She kissed him 3 or 4 times and he didn't wake up. So she went and woke up Nancy and said Mommy I kissed daddy 4 times and he didn't wake up! Nancy, who is an RN, went to the living room and immediately knew he was gone. He had just turned 31 and his wife gave birth to their son 6 days before Sonny went home to Jesus! Tiger preached his funeral which was hard because they were very close. They ruled his death an accidental overdose on a medicine he was taking.

As Tiger gets to share his story with people, he always shares that sometimes life is hard but we have to keep going. One Tigers favorite quotes is "We can't control what happens to us but we can control how we react to it!"

Tiger has over 3000 tumors on his spinal cord and sciatic nerves and he deal with pain on a daily basis, but that doesn't stop him from living his life. Tiger loves getting to share his story with anyone who will listen especially young people. To see more of his story or to contact him to to

Sunday, January 14, 2018

Case Study #47 - Savanna Punching the Bag

Savanna Pageau was diagnosed with NF at an early age of two. She is the only one in her family who has NF. When she was 11, she developed an infection in her toe. After months of pain and the doctors being puzzled, she had to have her leg amputated above her right knee. The amputation was due to gangrene and was said to be a complication from NF. Over the years she had to have revisions of her leg and other surgeries to have neurofibromas removed. She had to grow up faster than most of the kids her age. Despite being bullied, she didn't allow the bullies to deflate her spirit. Savanna, didn't allow her having one leg to stop her. She was on her swimming and diving high school team, she did open water swims, she rock climbed, she sky-dived. Recently, she started her journey to have an rod implant surgically inserted into her femur, this will allow her to wear a leg without any pain from her neurofibromas. This opportunity will allow her to have her dream come true. She has been using crutches for over 20 years and has wanted to walk more than anything. Savanna's mother, Janie has been involved with NF awareness and has done multiple fundraising events on her own to raise money and awareness. She is always by her daughters side and has never allowed Savanna to give up. 

Savanna, has been involved with the NF Hope Concert, which is based out of Las Vegas. Besides helping the organizers with the event, she has spoken at the concert a few times, sharing her story living with NF. Last November, Savanna went to Nashville to shoot the new NF Network video with others who have NF. She wants to be more than "the girl with tumors", "the girl with one leg", "the girl on crutches". Savanna wants to make an impression. She wants to make a difference to those who live with NF and feel alone. Savanna is a NF warrior, she has overcome many challenges, being pointed and stared at and having moments of "why me". But, she wouldn't change anything. Living with NF made her into the person that she is, she is a fighter and she is understanding. Savanna has also met the most incredible people, because of NF: a family.

Friday, August 4, 2017

Case Study #46 - Jerry Woodworking Outside

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Everyone knows that joining the military will change their life. Jerry Willman did not expect the change to be like this, though. He was attempting to join the Navy and went to the MEPS center. He had two small spots on his left wrist that concerned the doctors. However, they said that if he had them removed, he would be able to try to go through again. With that in mind, he had them removed and tried again. This time, Jerry would hear the news that would forever change his life.

In October 1983, Jerry met a doctor who told him his life would consist of going home and waiting to die. He first referred to this death sentence as Von Recklinghausen’s Disease. Jerry was in shock. He did not know what to do. All of the information then was associated with Joseph Merrick, “The Elephant Man”. Ironically, weeks before his unfortunate diagnosis, he had met a man who first introduced him to “IT”, but he called it Neurofibromatosis (NF). He was living, successfully, with NF, appearing in a sideshow at the Tulsa State Fair. His stage name was “The Man with Two Faces”. One side of his face was about five times larger than the other. His name was Robert “Bob” Melvin. He was a nice gentleman, and Jerry was able to see him perform on more than one occasion. Jerry wondered if he would eventually look like him. Jerry felt mentally lost since he could not easily explain what was happening to him and Melvin was the only other person he knew with NF.

Jerry returned to high school to get his diploma. During the summer, he attended the Upward Bound Program offered by Rogers State College. Since he was unable to join the Navy, and was “sentenced to die”, he chose to return to school and work toward a degree. Jerry obtained his AA and BA in Technical Theatre from Rogers State College. He worked for a short time at Discoveryland in Oklahoma doing the play “Oklahoma!". Trying his hand at counter sales, he moved to Texas. He later worked managing and doing maintenance for a small motel. Choosing to take some time off from the motel, he traveled on a two man construction crew across seven states for about a year. Jerry later returned to Oklahoma, where he is now living and taking care of the house he grew up in. Around, the house, he tinkers with small projects using wood and other materials.

NF has inspired Jerry to do many things. In Jerry's words "I’m always advocating and iNForming people about Neurofibromatosis. I did my first NF Walk in 2010 and have continued to do so since then. I have also began running in the Cupid’s Undie Run in multiple states". Jerry was the top fundraiser for the Cupid's Undie Run in 2017. Jerry passed away suddenly and unexpectedly later that year. His legacy will live on through all who knew him.

Sunday, July 2, 2017

Case Study #45 - Angela Writing Her Blog

"Angela Writing Her Blog" 2017. Oil on Canvas. 30" x 24"
Angela Velasquez inherited Neurofibromatiosis type 1 from her mother, she was diagnosed at birth. She had her first surgery at eight days old to relieve pressure from her right eye caused by congenital glaucoma which was attributed by NF. By the time Angela was 18 years old she had had a total of 17 surgeries. When Angela was 12 years old she had a surgery to remove her right eye because she had gone blind but the eye continued to affect her overall health; shortly after that surgery she was fitted with a prosthetic. The majority of the surgeries that Angela had were reconstructive, the right side of Angela’s skull did not fuse together, which left her with a golf size hole by her temple. This was very dangerous because it potentially left her brain exposed. During her last surgery the surgeon used both a titanium plate and hard plastic mesh to correct the damaged bone and protect her brain. Angela has not had surgery since 2005, but recently spoke to a surgeon to remove fibromas that were bothersome and to do further reconstructive surgery on the right side of her face and skull.

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Many would think that a childhood filled with doctor’s appointments, needles, tests and surgeries would be difficult, but for Angela, that was the easy part because she understood from a very young age how important and necessary all of this was. The worst part of her childhood was the bullying of her classmates. Angela felt like an outcast for much of her childhood and adolescents because her classmates were very cruel, calling her names and simply ignoring her presence. Middle and high school were especially difficult because the jokes and shunning became more cruel and frequent. Angela would more often than not get home from school to the arms of her brothers and parents and cry. Thankfully, Angela has always had an amazing support system: two loving parents and two older brothers that can at times be over protective. Despite being harshly bullied by classmates, Angela met and made incredible friends in school that helped her heal and deal with ignorant and mean classmates.

In July of 2012, Angela began writing a blog, “Life with Neurofibromatosis.” She writes about her childhood and how bullying had played a role in her depression even years after graduating high school. She writes about surgeries, scars and how she uses her hair has a protective ‘’shield”. Angela even shared her suicidal thoughts and close attempt. But she also writes about positive and amazingly beautiful aspects of her life, like graduating college, being in love and finding work in her field of study. In December of 2013, Angela graduated college with a Bachelors in psychology and a minor in sociology. Shortly after in March of 2014, she began working for the Crisis Center of Tampa Bay, a nonprofit. She began working as an Intervention Specialist, answering crisis calls, including speaking with individuals that were having suicidal thoughts. In April of 2017, Angela was promoted into Supervisor of that very same department.

Angela wants others with NF to know that they are not just someone with NF, they are an incredible human being with a great purpose. That is a big reason why she writes and shares her story because she does not want others to think that all they have to offer this world if NF. Angela’s determination has given her the strength to not give up and keep pushing forward. She participates every year in the Cupid’s Undie Run to help spread awareness and is not afraid to educate a stranger about NF and why her face looks the way it does.

Wednesday, May 31, 2017

Case Study #44 - Keisha Swimming with Dolphins

"Keisha Swimming with Dolphins" 30" x 24" Oil on Canvas
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!”

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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."