Monday, November 26, 2018

Case Study #56 - Tim Mastering 5 Pin Bowling

Prep Sketch
Tim Golumbia is a 55-year-old social worker. He was diagnosed with NF1 at about the age of 12. His was a mutation as there had been no NF history in his family. He had cafĂ© au lait spots and a few growths but nothing significant. He started puberty at the age of 7 and had an early growth spurt resulting in his being taller and hairier than his peers. This resulted in significant teasing and bullying. The ill treatment from his peers intensified due the added burden of a speech impediment and a learning disability. Tim’s coordination and balance were very poor so he did not perform well in sport-related activities in gym class. Tim was shy about changing for gym or going without a shirt not because of the NF tumours but because he was teased about his appearance. School was difficult academically and socially because of his social awkwardness, lisp in his speech and clumsiness.

Tim has had 6 or 7 procedures to remove tumours on his skin. The ones removed were mostly to determine what they were and if they should be a concern. Tim has a growth in a finger on his right hand that has been trimmed twice, the last time when he was 15. Since that time, it has grown back again but he has decided that since it is not in the way or causing problems, he will leave it be. In around 2005 he had some small growths on his neck removed as they were being irritated by his shirt collars. Tim is not bothered by the presence of his tumours and does not feel it is necessary to remove them unless they are causing pain or other problems. He wears them with pride and welcomes questions and queries from strangers about what they are. An acquaintance once asked him why he never had a large tumour on his temple removed and Tim asked why the person why it should be removed. It is a part of who he is and it does not bother him.

Tim did not meet any other peers who had NF until around his 40th birthday. He attended a symposium in Vancouver and it was an eye awakening experience. He sat at a table with a number of parents of young children who inundated him with questions about his experiences and for thoughts of what they may expect to experience as parents. He also felt comfortable yet uncomfortable around other people who had NF. It was a strange experience to see others with bumps. But the level of comfort grew quickly but also gave time an understanding of how others may feel and react when they meet him. Not long after this first symposium, Tim was contacted by the executive director of the British Columbia Neurofibromatosis Foundation (now known as the Tumour Foundation of British Columbia) about becoming a board member. They had felt Tim’s positive energy and thought he would be a great addition to the board. Within months Tim was on the board and acting as treasurer. Shortly after that the President had to step down and Tim stepped into the position. He was awarded the BCNF Paul Ralfs Volunteer of the Year award for 2012 by the board of directors. Tim resigned from the BCNF board in 2015 but became vice president of the Alberta Tumour Foundation in 2016.

Tim’s learning disability affected his schooling. His intelligence was higher than normal but he performance was low. He tried attending a university but did not get past the first year due to his low marks… a few years later he tried again and succeeded. The difference the second time was
that he had a computer that allowed him to get his thoughts down in an organized manner. He also had a new passion to become a social worker. He graduated with a Bachelor of Social Work. He used that degree to enter the field of Child Protection, or Child Welfare Services. He has been employed continually since 1993 in this field.

In 2010 Tim was working one day in Nanaimo British Columbia when he was asked to assist a child services office in Edmonton Alberta. Tim was asked to interview children staying with family in Nanaimo to assist with an investigation in Edmonton. During the initial phone call, he mentioned he talked about his bumps as a way of breaking ice with children… and mentioned they were called Neurofibromatosis…. The Edmonton worker replied that she had a co-worker with NF and then asked Tim if he was single. She referred to herself as cupid and the interrogation began. 2 days later Tim was talking to Gail. It became a daily one-hour phone call for the first month at which point Tim sent Gail flowers, and Gail then booked a trip to Nanaimo to meet Tim 2 months later. The courtship continued with each visiting the other’s home twice a year. Tim Proposed in April 2012 and Gail said yes! Tim moved to Edmonton in June 2013, they were married in August 2014 and they continue to live a wonderful life together today.

Tim enjoys golfing, 5-pin bowling and walking their dogs. Tim continues to work in Children’s services and plans to retire in early 2021.

Saturday, November 17, 2018

Case Study #55 - Jake Hitting the Ice

Prep sketch for painting
Jake is a native of Edwardsville, Illinois, across the river from St. Louis, Missouri. He was diagnosed with NF2, in January 2003 at the age of 18 after he noticed he could no longer hear out of his left ear. In June 2003, one week after graduating high school, he had surgery to remove the left acoustic neuroma. Five years later, Jake lost the hearing in his right ear, and was left completely deaf. It was also discovered that he had a winged left latissimus dorsi muscle due to one of the spinal tumors. The deformity had really deteriorated the range of motion in his left shoulder. Jake’s doctor, Dr. Benecke, suggested sending him to Massachusetts General Hospital in, Boston. It was there he met Dr. Scott Plotkin, who suggested they try to treat the NF2 with the chemo drug Avastin. Jake has been on and off Avastin ever since, and the drug has been extremely effective in helping him keep his NF2 symptoms in check.

Despite the positive effects Avastin, Jake still feel the effects of NF2. He has cataracts in both eyes. According to him, that can make golf a little complicated; his playing partner will have to help him track his shots. He gets nerve pain whenever the weather changes. There are good days and bad days. And he says you can’t really predict which days are going to be good and which are going to be bad. Jake’s philosophy, “I just kind of take life one day at a time.” In January 2012, Jake had to have a second brain surgery, to remove a tumor that was right on top of his skull. The surgery was successful, in large part due to the skill of his surgeon, Dr. Curry. He had to spend a week in Boston post-op, but his recovery was amazingly fast. To quote Jake, “I was very lucky.”

Jake also describes having issues with fatigue, and he worries a lot about the health of his kidneys because of long-term Avastin use. Because of this, he tries to really be mindful of what he puts in his body. According to Jake, “I drink at least a gallon of water a day, and avoid gluten, dairy, and any kind of processed food. I’m always gearing up for the next battle.” There’s a tumor on Jake’s spine that is most likely going to have to come out at some point. The surgery is going to be a challenge but he’s prepared to deal with. He realizes the recovery will no doubt be a grueling process. While the surgery is not official yet, Jake is already working out a recovery plan. His chiropractor, Dr. Ashley Eavenson, has promised Jake that even though he won’t be able to hear the music, she will at his request, blast the Rocky theme song in the training room, while he knocks out rehab sessions.

Jake has a degree in Creative Writing, which he obtained online through Southern New Hampshire University. He’s attempting to write a book, detailing his battle against NF2, and his life as a late deafer. It’s a work in progress. “I have a long way to go.”

Jake can’t hear and that’s a major setback, but his mentality is that if you focus enough on what you can do, then what you can’t do is irrelevant. “NF2 sucks but you deal with it and make adjustments. I enjoy being active, it’s a good way to boost confidence and deal with the anxiety NF2 causes.”

Jake’s greatest love, after his little sister, nieces and nephew, is hockey. According to Jake, he picked it up late in life. “I was 31 when I started, that's old in hockey years.” He pursued it anyways because it struck him as a great way to fight NF2. Hockey is a game that requires balance and coordination, two things that NF2 reeks havoc on. None-the-less, he figured it out. Jake makes it clear that It was by no means easy. “I spent the whole summer that year, doing really brutal conditioning work, because I knew my body would have to work twice as hard, to compensate for my less than optimal balance.” That was a little over two years ago; he’s been playing ever since as much as possible. Jake’s blunt in saying, “I have no fantasies about being the best player on the ice.” He makes it clear that’s not what it’s about; it’s about knowing that he didn’t let NF2 stop him. It took him a lot of reps, but he’s gotten to the point that he feels comfortable and confident on the ice. “While I’m by no means graceful, I’ve overcome the mental roadblocks and taught my body a lot of new moves and motions.”

Jake sees playing sports as a great way to hit back at NF2. It keeps his body healthy physically, and it feeds a certain part of his psyche that nothing else feeds. Jake also hopes to show other patients, especially kids with NF2, that their disease doesn’t stop them unless they let it. In an effort to spread awareness, Jake had his own hockey jersey made. It proudly displayed the words “NF Fighter” on the front, and since he has NF2, he had the words “Type 2” sewed on the back.

Hockey is tough, and it’s not for everyone, but Jake say’s for him, it’s the best method for coping with NF2. To quote Jake, “I’ll be out on the ice either playing or training, and I’ll be just totally gassed, my legs shaking, and my brain begging me to stop. Then I look down and the “NF Fighter” on my sweater. Then it hits me. “This is it dude, this is where you beat it, right now in this moment. You’re not just training to play hockey, you’re training to beat NF2. You’re preparing for the next surgery, by making you’re making body and mind too strong for NF2 to handle. You don’t suffer from NF2, it suffers from you.” Jake has resigned to the fact that he’ll have to go under the knife again. In those moments, he likes to remember a quote from his martial arts instructor, Joe “THE Boss” Mayberry, “chicks dig scars and you come across one that doesn’t dig scars, she’s not worthy of your time.”

Monday, September 10, 2018

Case Study #54 - Gail Golfing the Course

Prep Sketch for "Gail Golfing the Course"
Gail is a 57-year-old, 2nd generation, individual with Neurofibromatosis, NF1. She was born with a large tumor on the left side of her chest. The doctors did not know this growth was NF until she started puberty and more small bumps started growing on her body. When she was 20 years old, Gail had an NF tumor on her chest removed that measured approximately 9 by 12 inches. She almost did not survive the surgery due to blood loss. However, she was determined to live. Because she survived, Gail saw this as “her calling” and an opportunity to spread awareness of NF.

Throughout the years, Gail was teased, bullied and ostracized due to her physical appearance. Besides the stares and name calling, she was asked not to swim in public pools, not to touch fruit at the market and people would refuse to sit next to her. Many people thought her condition was contagious. Gail took these situations as an opportunity to let these individuals know about NF.

Gail has had close to 40 surgeries over the years, removing bumps/tumors that are creating pain or difficulty for her. However, this has not slowed her down, as she has played many different sports over her life span, and continues to this day, including swimming in pools. She has 2 university degrees in both sociology /pyschology and social work and has spent over 31 years working as a social worker.

Gail has been very fortunate to have some amazing and loving friends and family that have accepted her for the way she is. She got married when she was 53 years to a man who also has NF.
Gail says, “when I look in the mirror, I don’t see NF, I only see my big bright smile and my mischievous eyes looking back at me.” Gail wants everyone to know that individuals that are affected by NF are just regular people. They have hopes and dreams. They eat, drink, sleep, laugh and cry, just like everyone else.

Gail has actively participated with the Alberta NF support group. Assisting individuals living with this condition and letting them know they are not alone. Gail is on the Alberta Tumour Foundation Board which supports and assists individuals and their families, as well as to educate others.

Wednesday, June 13, 2018

Case Study #53 - Ameliana strolling the Ramadan Bazaar

"Ameliana Strolling the Ramadan Bazaar" 2018. Oil on Canvas. 30" x 24" 
Ameliana Meahan Yap fondly known as Amy was born in sunny Singapore. She is the first person in her family to be diagnosed with Neurofibromatosis Type 2 (NF2) at the age of 18. During her adolescent years, she had undergone several minor operations to remove external growths on her back, neck and eyelid.  Back then, they did not link it to NF2 and only mentioned that the cells were schwann cells. They also found out, due to poor eye test, that her left retina has a scaring which was initially misdiagnose as a lazy eye until a second opinion was conducted. Apart from the scaring, she had a floating eye and underwent surgery to correct it.

She did not face any issues during her early teenage years however at 18, she started to experience a sudden ear block on her left ear which she had thought was due to swimming. It did not subside for months and she also started to experience severe headaches. Upon undergoing an MRI, it was revealed that she had a large growth on her auditory nerve which cause the blockage and hearing loss. She also had another on her right auditory nerve and several others in her brain. It was then they relooked at her medical history and concluded she has NF2.

Prep Sketch
She underwent a radiosurgery known as Novalis instead of an operation for her left growth as it was large and growing very near to the brainstem. They wanted to leave the right growth alone to save her hearing. Unfortunately, months later she would lose it overnight and eventually become completely deaf. During this time, her neurologist arranged an MRI for her spine where it was confirmed she had more tumors alone the spine region. They were left untouched but monitored since there were no issues then. The novalis had fortunately worked in shrinking her left growth significantly.

The loss of her hearing and medication to help with the brain swelling, which at one point caused her to temporarily lose her vision, made her mentally unstable and she had to make a difficult decision to withdraw from her Biomedical diploma to focus on her recovery. She had slipped into depression feeling lost with the now silent world and facing rejections from family members, friends and later on while trying to resume schooling and eventually on getting a job. Thanks to her supportive love ones especially her partner, Damian, she was able to keep fighting on even when things look bleak.
Damian had also helped her cope with learning a new way to communicate with each other via texting, writing and creating their own sign language. It spurred her on to attend sign language classes that brought her into the world of the Deaf community.  Being with other Deaf individuals, she learned how to adapt better into the silent world and became more positive. During the same time, she was offered a job as a Junior Operation Executive at a translation company where she liaises with translators from all over the world online. The job role had boost her confidence and self-esteem as she was given an equal opportunity and treated the same way as hearing individuals. She did not feel she was seen as different.

After gaining 5 years of experience, Amy decided to take a leap of faith and challenge herself further by switching to a multinational company to become an administrative assistant for office support. Her job there requires her to communicate with individuals directly unlike at her previous workplace and handle more roles. She hopes with different roles, she would eventually find out what is her niche and at the same time she would like to create awareness for people with special needs and illness. That through her presence working in the company and constant feedbacks on how the company can assist her, that it will be a more inclusive place which might open up more job opportunities in the future for this group

Being an active person, she joined a dragonboat team comprising of deaf paddlers and hearing volunteers. Later she also signed up to a gym and started to do more strength training which had helped play a part in improving her balance tremendously. Yet again with the support and encouragement of Damian, she has also tried more things such as going back to cycle on 2 wheels and hiking. Still, her favorite is swimming as she loves being in the water. Together, they had also swam with wild dolphins in Perth during their holiday.

Amy believes that with NF2, every moment is very precious and therefore we should seize each and every single day. We should not let the future scare us and prevent us from attempting new things or even revisiting things we used to do. She believes to that as long as you know your limit, give it a try. At least you won’t have to look back wishing you had done it back when it was possible.

Monday, June 11, 2018

A Portrait of Progress - Ashok's New Face

"Ashok Visiting Creighton University" 30" x 24" 2018 Oil on Canvas
This is the prep sketch for a new painting of Ashok post 1st surgery. He dressed up in his national attire while my friend took photos of him for me to use as reference. He has nostrils now and I can tell where his mouth is formed. Drinking with a straw is now something he is able to do post surgery. I could understand him much more clearly on his 2nd visit to Omaha after the surgery. Progress is being made! I promised Ashok that if we could raise money for the last surgery where he would get his prosthetic eye, I would paint a life size portrait of him!

For those of you new to the journey, I will start at the beginning:

Ashok Shrestha suffers from neurofibromatosis (NF), a genetic condition that results in the development of multiple tumors in the body. In 2016, he began raising funds to travel from Nepal to Presence St. Joseph Hospital in Chicago, IL, USA to have surgery to remove the tumors which have disfigured his face.

Prep Sketch - "Ashok Taking Photos at Creighton University"
Ashok's visa was approved, and he arrived in Chicago in December of 2017.

After several consultations with the medical specialists and many tests, it was determined that Ashok required two surgeries: one for the tumors on his face and cranial reconstruction, and one to place a prosthetic eye. The cranial reconstruction is of course a risky and difficult procedure due to the exposure of the brain during the procedure. Ashok's skull will need to be literally taken apart and completely reconstructed, and the brain will lack support and protection during this most delicate part of the procedure.

In addition, the cost of lodging in Chicago has been higher than he anticipated, and he needed someone to help him with meals and other needs after his has been discharged from the hospital, while he is still recovering from the surgery. He has no family and no traveling companion to provide him with day to day assistance and care.

Original painting done in 2016
"Ashok Chatting with Friends"
Ashok's arrival in Chicago coincided with my art exhibit in Norfolk, Nebraska to raise NF awareness. It featured paintings of people with NF. This painting of Ashok is among the featured paintings in this exhibit. Ashok made a trip here to Nebraska to participate in the exhibit. My friend Mary and her husband offered him a place in their home while he was here. I was able to schedule several media interviews for him during his visit regarding neurofibromatosis in general and his situation in specific.

Out of these interviews came a request for a US-based GoFundMe page to facilitate the additional fundraising needed to cover Ashok's surgeries, as well as any lodging and meals while he is in Chicago, and any after surgery care he requires during his recovery. My friend Mary stepped in and did all the logistics.

To read the story of Ashok's first visit to Omaha and his interview with the Omaha World Herald, click here:
http://www.omaha.com/livewellnebraska/plus/grace-disfigured-nepali-man-in-u-s-for-surgery-comes/article_89f10aec-d4a8-587a-b820-352dbf683e36.html

To see more of Ashok's story so far, you can read this article:

We had many setbacks during this journey including the hospital reviewing his case and more than doubling the expected costs of the surgery. We are blessed that so many people stepped up and donated--including my friends, family and Creighton University along with the NF community and Nepali communities in Chicago and Omaha. In fact, all bills received for Ashok's first surgery have been paid in full! Thank you to each and every one of you who have made this possible!

You can see the difference in Ashok from this before and after picture. Dr. McKinnon was able to remove about 85% of the tumor:
Before and after the first surgery


The amounts paid specifically for the 1st surgery and recovery were:
$25,000 to Dr. McKay McKinnon
$26,500 to Presence St. Joseph's Hospital
$3,528 to Midwest Anesthesia Partners

The Chicagoland Nepali Friendship Society raised funds which covered a live-in caregiver for Ashok during the first month of his recovery. Members of the Nepali community in Chicago have also continued to provide Ashok with an apartment as he recovers and waits for his next surgery.

Thanks also to the family of Sheila Drevyanko, volunteer with the Iowa Chapter of the Children's Tumor Foundation. Her family has provided significant support, including transportation to and from the hospital and most doctor's appointments, furniture for the apartment, help with filling prescriptions and much more. We appreciate their "feet on the ground" support in Chicago.

We have come so far, farther than we would have thought possible! When the hospital nearly tripled their fees, none of us knew how we would ever have the funds necessary, but you all came through.

Please continue to share this campaign and contribute as you are able. We have only weeks before Ashok will be ready for the second surgery. Estimated cost is approximately less than $20,000. It isn't nearly the hurdle of the first one, but still... no small sum. All help is much appreciated!

https://www.gofundme.com/ashok-shresthas-surgeries

Sunday, May 27, 2018

Case Study #51 - Ivan Selling Mung Bean Cookies

Ivan Selling Mung Bean Cookies - Oil on Canvas. 30" x 24" Rachel Mindrup. 2018
Ivan Ardian was diagnosed with NF1 at the age of 14. Living a life with an NF disorder in Yogyakarta, Indonesia is not easy. Because of the hardship it brings it has strengthened him mentally as their is the belief that NF is a test from God that must be lived and endured. Ivan has had psychological pressures from the environment because he looks "different". People give him strange stares and they bully him. The call him "Gotri" which is Javanese for "steel balls or buckshot". He does not get the same opportunity as those without the disorder. Ivan has one large tumor on the side of his left hip and one on the left side of the back of his head which causes severe headaches.

Prep sketch for painting
But all that adversity makes Ivan train harder and makes him stronger as he faces the challenges. He does not seek medical treatment because he cannot afford it. NF makes it difficult for him to get a job. He is married with 2 children, Mutia and Mizan. Fortunately his wife loves and accepts him even though he has no permanent job. As a husband Ivan feels he has to fight, to do everything he can to earn money for his family. He has multiple jobs from: driving city tour car for tourists, minor trouble shooting of restaurant equipment, setting espresso coffee machine, etc. His most steady job is currently selling Mung Bean Cookies to survive, but the NF keeps him in a poor condition.

His daughter Mutia is in the 2nd year of high school, and Mizan is in the last grade of kindergarten. He is preparing to enter primary school. Ivan has to pay the school debt to keep them in school. He prefers to work, he hates having to ask for money but he has no idea, he feels he is at a dead end. He welcomes any options for jobs, either in Indonesia or abroad. Please contact him if you have any ideas.

Monday, March 19, 2018

Case Study #50 - Amy Creating a Planter Box


"Amy Creating a Planter Box". oil on canvas. 30" x 24" 2018.
“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. 

Prep Sketch
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.