Case Study #68 - Rachael Driving the Boat

"Rachael Driving the Boat" 30" x 24" Oil on Canvas. 2019

Rachael Crosby was two years old when she was diagnosed with NF1 due to a spontaneous mutation. She passed it down to her two sons: Dawson and Ashton. NF caused her to be in speech therapy until the 4th grade. She had a very large plexiform removed from her inner thigh when she was a teenager and also a large fibroma removed from the bone in the shin when she was a child. She has had several fibromas removed from her abdomen and back. Rachael has had to have multiple surgeries where fibroma covered organs have been removed such as her gall bladder, tonsils and appendix. The PCP has told her that they believe her organs failed faster due to the NF. Rachael also has battled cancer once before and had to have a full hysterectomy at age 23 because of it.

Prep Sketch for "Rachael Driving the Boat"

Rachael wishes she didn’t have NF but tries to stay as positive as she can being as active as she can be. Her motto is “I live for today because tomorrow isn’t promised to anyone.” She loves fiercely and fully as she always knows there is someone else worse off than her. She tries and makes the best of everyday and tries not to sweat the small things. She always over analyzes before speaking when upset because she does not want the words she says to possibly be the last words someone hears or be the last that she possibly says.

Her son Dawson had ADHD, ODD and Dyslexia which all caused some learning disabilities for him. He had a large plexiform removed when he was 7 that was rope like and wrapped around his collarbone and shoulder blade and went down into his rib cage. He also had kidney issues. He passed away at age 13 due to brain cancer. Ashton has a large fibroma in his rib cage and sternum area and has a little learning difficulties but for the most part Rachael believes they all have a mild case compared to some, but continues to raise awareness for both NF and childhood cancer because she believes they both deserve a cure.

Case Study # 67 - Stephanie Awaiting the Train

"Stephanie Awaiting the Train" Oil on Canvas. 30" x 24" 2019.

Stephanie Forbes was born and raised in Sacramento California. She grew up the oldest of three kids. Neither school nor home life were easy for her during these years. Doctors diagnosed her around the age of 5 with Neurofibromatosis. Her NF is a case of genetics passed down to her as her mother also has NF. In school, She suffered relentless bullying at the hands of her peers. She suffers from a large plexiform tumor on the side of her face that lowers her ear. Doctors are not able to operate on it at this time. In addition to that, she experiences much pain throughout her body. Stephanie had many operations and procedures growing up, many times having to travel several hundred miles just to get an MRI.

Prep Sketch

Stephanie is now the mother of two and grandmother to one. Michael, her son, was born in 1996. Cecelia, her daughter, was born in 2002. Michael had a daughter named Amaya who was born in 2017. Stephanie met her now husband, also named Michael, on a Facebook page for adults with Neurofibromatosis. They enjoy telling the story of how he was having a bad day so she mailed him 2 dozen snickerdoodle cookies each with a positive affirmation of uplifting notes between them. After several years of writing back and forth and many hours of telephone conversations, Stephanie and Michael met in person for the first time and fell in love ~ quite possibly even before that initial meeting. Stephanie enjoys photographing infants and nature. She also enjoys writing poetry, painting, pottery and many other artistic activities. Michael has a love for trains and on this day they both sat and waited for the trains to come down the track.

One of the best attributes about Stephanie is her kindness and compassion toward others, especially those with disabilities. Her experiences as a child and young adult shaped her to be more empathetic and understanding of others needs, to a fault Stephanie will often put others needs in from of her own. She and her husband are both very involved with NF Midwest helping with their annual walk and fundraiser in Naperville, Illinois every summer.

A Portrait of Progress - Ashok's New Face (#25, #52, #57, #69)

"Ashok Holding up the Bean" 2019. 30" x 24" Oil on Canvas.

September 2019 Update:

Prep Sketch for "Ashok Holding up the Bean"

I am starting the next painting of Ashok post 3rd surgery. This will be the fourth oil painting that charts his progress through the surgeries with the most recent surgery focused on the addition of his prosthetic eye. The eye was an additional $1500 that my drawing friends in Omaha helped fundraise. My friend Regina and I drove out to Chicago to spend Labor Day weekend with Ashok. On the first day he took us to the Hindu Temple of Greater Chicago located in Naperville, Illinois and then later that evening we drove into the city and visited Cloudgate (the Bean) and Millenium Park. Ashok is an avid photographer and took tons of photos, but in a fun turn of events, I was able to capture a whimsical one of him experiencing "the Bean" as most people call that sculpture. The second day was devoted to driving out to Rochelle, Ill and going to a place called the Kitchen Table courtesy of our friends Michael and Stephanie Forbes--a couple who both have NF. The restaurant is a "pay what you can" community style establishment. This was Ashok's first time trying grits. Afterwards, Michael took us to the rail line where the BNSF and the UPRR cross which was a lot of fun to experience. In the afternoon, I spent some time drawing his portrait from life.

December 2018 Update:

Ashok Playing Jenga 30" x 24" oil on canvas. 2019 

I am starting the next painting of Ashok post 2nd surgery. This will be the third oil painting that charts his progress through the surgeries. His second surgery happened in July 2018 and the hospital bill has been paid. We are just trying to get his doctor bill paid off as well as the anesthesiologist's bill. Ashok is doing well and has connected with many friends who also have NF or have family with NF due to his involvement with NF Midwest. On Christmas Day he was invited over by a couple (both of whom have NF). They made cookies, played some games and had a wonderful time. This was Ashok's first time playing Jenga. I thought it made for a fun painting and it reminded me how much fun my family has just playing board games together. We are hoping that once the 2nd surgery is paid off, the 3rd surgery will be scheduled in the beginning part of 2019.

June 2018 Update:
This is the first 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!

Prep Sketch for "Ashok Playing Jenga" - Post Surgery #2

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.

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.

"Ashok Visiting Creighton University" 30" x 24" 2018 Oil on Canvas

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.

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.

Prep Sketch 

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:

http://www.omaha.com/sponsored/creighton/art-is-everywhere-nepalese-man-gets-new-lease-on-life/article_e0b56fd5-08d1-5ccc-953d-3e1ce4e6ce9c.html?utm_medium=social&utm_source=facebook&utm_campaign=user-share

Original painting done in 2016
"Ashok Chatting with Friends"

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:


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.

Before and after the first 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