Tuesday, July 28, 2020

Case Study #85 - Laurie Sewing a Baby Bib

"Laurie Sewing a Baby Bib" 30" x 24" Oil on Canvas. 2020.

When Laurie was born in 1973, the doctors noticed cafe au lait spots, one of which was wrapped around her torso. They also noticed small tumors on her left buttock, and one on her right leg. After a few months the doctors told her parents the news. Laurie had Neurofibromatosis type 1. The doctors knew very little and assumed her life was going to be short and painful. As she grew the signs of NF1 became more apparent, Laurie spent many nights sleeping with her parents begging for them to stop the pain. They wanted to but they couldn’t and the doctors didn’t know how. As Laurie grew her parents noticed that her legs were different lengths and she had developed a major limp. Once the doctors knew the difference in the length, Laurie had to have a lift built on the bottom of her right sho
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e.

When Laurie was eight she went to John Hopkins Hospital in Baltimore, MD where she had the first of many surgeries including the debulking of a plexiform tumor in 1981. Laurie would continue to have many surgeries to debulk and remove tumors. Those tumors are and have returned, getting them out completely is never going to happen. As a school girl, learning was a challenge. Laurie struggled to make friends and would be bullied daily from classmates. She was constantly reminded of how stupid she was and when Laurie couldn’t pass a test it was a reminder. In physical education classmates would never want her on their team. During PE class the other classmates would end up throwing/kicking balls that would purposely hit her where the plexiform tumors were. Teachers never really seemed to care. 

Laurie hated school. She wanted out so badly. Laurie graduated high school and went on to earn two associate degrees, through a local community college. As an adult Laurie has had to continue to have surgeries, some of been pretty challenging to recover from, but she has learned to manage. Because the risk that the plexiform tumors may become cancerous, routine MRIs are normal, but now she is used to having them that she can easily sleep through them. Daily life is filled with chronic pain, some days it’s rough but getting up and facing the day is important. 

Laurie has spent 28 years in the classroom, the first five years she worked in a child care center as an aide for infants through 2 year olds. The second five years she was in charge of fifteen two year olds and 2 assistants. She loved those little children and found that age to be entertaining and challenging. The last eighteen years she has been an instructional kindergarten assistant which was her calling. These past eighteen years have been wonderful for her, despite being in severe pain all the time. Her job has been her happy place. Those kids have given her a purpose, a reason to actually want to get out of bed, and a reason and a purpose to keep up the fight.

Saturday, July 18, 2020

Case Study #84 - Michaela Ringing the Bell

"Michaela Ringing the Bell" Oil on Canvas. 30" x 24" 2020.

Michaela was born in Rome, New York. No one in her family had NF and it was only discovered during a routine wellness exam at the airforce base that her dad was stationed at in Texas. The doctor looked at her skin and asked her if she knew she had it. She did not.

Growing up, Michaela enjoyed learning German and enjoying those traditions as her father met her mother when he was stationed in Germany. She has two younger brothers. One is now a dentist and the other a real estate broker. She has lived in Albuquerque, New Mexico and has lived in South Carolina since 1995. She has one son who is does not have NF and will be graduating soon from Winthrop University.

Michaela has had to have some of her NF tumors removed and more recently has battled both sta
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ge 4 breast cancer and brain cancer during her adult life all within the span of less than two years. While NF doesn't necessarily cause breast cancer, those with NF have a five times greater chance of hav
ing it compared to the unaffected population (per information from the National Institute of Health). Michaela just recently finished her last round of radiation for breast cancer which was #53. Earlier in the year she had to have gamma knife surgery for her brain cancer. She receives her care at the Medical University of South Carolina. Prior to battling cancer, Michaela worked as an elderly caretaker and loved it. The constant toll of being on chemo and radiation leaves her feeling fatigued quite often. Michaela loves kayaking, yoga, movies, music, travel including cruises, swimming, drawing, reading and going to the beach along with tai chi gi gong meditation.