A battle of true Grace
October 30, 2017
She sat on her bed and looked into an abyss of darkness, preparing herself for another sleepless night of endless headaches and a never-ending pattern of coughing. For Grace Hartman, junior, this became her nightly ritual starting late December 2016.
As Grace’s condition deteriorated, she received a CT scan in mid-January informing her that her sickly state was due to a minor sinus infection. Little did the doctors know, Grace was included in the 1 of a million people suffering from the first stages of Granulomatosis with Polyangiitis or Wegener’s disease.
“If I got at least three hours of sleep per night, I felt good,” Grace said. “I remember one night, sitting on the porch with my mom crying my eyes out, begging to go to the hospital, but the doctors just thought it was steroid psychosis from antibiotics I was on.”
According to Grace, Wegener’s disease is an autoimmune disease causing inflammation in blood vessels, affecting a strand antibodies within her body. Rather than protecting her body from diseases, these antibodies attack blood vessels and release immune proteins causing a blockage of blood flow. This can result in death of tissue, cartilage or organ failure. When she first learned about her disease, Grace said she was fearful knowing the severity of her disease was life-threatening.
“In February, things became so terrible that I couldn’t function,” Grace said. “Looking back, I don’t know how I went to school. At that point I was on seven different antibiotics and went to the hospital about 10 times with five different doctors.”
As March approached, Grace’s condition worsened making it hard for her to complete daily tasks. By the end of the month, Grace found herself short of breath while walking and required assistance to sit up.
“I remember during that time I had a terrible pain in my side, and it turned out to be a broken rib from coughing so much,” Grace said. “I was so sore and it felt like pins and needles were attacking my whole body, but at the same time I couldn’t feel anything. I was constantly throwing up and I lost a total of 20 pounds.”
Grace was then taken to St. Louis Children’s Hospital where she spent four days of undergoing testing. After testing positive on her Anca test (test specific to identifying Wegener’s disease), Grace’s doctors determined her diagnosis to Granulomatosis with Polyangiitis. Grace was treated with Rituxan IV infusions with chemotherapy. These infusions cannot strengthen pre-existing beneficial antibodies, but can only be used in attempt to kill the harmful strands.
“I remember waking up at five in the morning and being surrounded by about 25 doctors,” Grace said. “I was the strange case everyone was interested in. For the days I was there, I heard the doctor’s talk about Wegner’s, but they warned me not to look it up because they didn’t want me to be scared.”
Grace’s mom, Liz Hartman, also played a role in Grace’s journey by searching for medical professionals who could identify her daughter’s diagnosis. Despite the doctor’s initial prediction of a sinus infection, Liz was determined to search for a doctor who could treat Grace’s symptoms.
“It was hard seeing her so sick and in so much pain that she couldn’t even make it through the whole school day,” Liz said. “All I want for her is to have a normal, happy life as a high schooler like any kid should.”
During her time at the hospital, Grace was surrounded by family and close friends including Poppy Rost, junior. Rost visited Grace throughout the discovery of her disease and stood by Grace before and as she recovered.
“I knew how serious her disease was but it didn’t sink in until I saw her,” Rost said. “She was in a solitary room where the doctors had to put on special protective gear. She looked so fragile and whenever she wanted to do something, she always needed her dad to help her sit up.”
Even after chemotherapy, Grace continued to feel the symptoms of Wegener’s disease within the muscles and cartilage in her body. Due to the failure of blood flow, Grace’s nose cartilage collapsed. With her current condition, Grace cannot reconstruct her nose until further recovery.
“At first it was hard recognizing myself,” Grace said. “I was looking at some old pictures with my friend the other day and it was like looking into someone else’s life. I don’t feel like the same person, and I don’t even look the same as I did in that life.”
According to Grace, she is still in recovery and has a high probability of relapsing within the next two years. Even with her current medication, Grace said she still has a 25 percent chance of developing a terminal brain infection called Progressive Multifocal Leukoencephalopathy (PML). Despite her weak state, Grace said she motivates herself by looking at her journey through positive eyes and with a wider perspective.
“I could be dead if I was being treated 10 years ago if it weren’t for the medication they have today,” Grace said. “I always tell myself that it could be worse. Even when I don’t believe it I always tell myself that motto because that’s all you can really do.”