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

Prep Sketch

“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


Krizelle Researching NF2. Oil on Canvas. 2018. 30" x 24"
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.

Prep Sketch
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 www.tigercoffman.com