By Sharon Massey, mother
Jessica was a happy 10-year-old, just finishing 5th grade. I noticed subtle changes in her playing – when a playmate would come over, she would sit around instead of playing – and she cried easily. She ran a low-grade temperature and would say, “I feel hot inside but cold outside.” This never made any sense to us. We continued taking her to doctors at least once a month hoping they would see a change in her. She was losing muscle, becoming weaker, and running low fevers. The doctors couldn’t find anything wrong.
After six months, we demanded some explanation for what was happening to her. They sent us to Duke University Hospital, where doctors diagnosed her within an hour with dermatomyositis. We were both relieved and scared. What did it mean?
We stayed at Duke for three days, and it took me that long to learn how to pronounce this new word that had invaded our lives. Jessica was a frail 45 pounds and 4’5″ tall. She was immediately given IV prednisone intravenously and stayed on heavy doses. By the third day, she had improved, able to walk without limping or lagging behind. This is the beginning of our long journey, which has now lasted 12 years.
The school years
Jessica remained on prednisone for four years, gaining 45 pounds, but not growing taller. We tried to keep her on a good diet, but she was always hungry. She had stomachaches, reflux, nausea, and felt lousy. Prednisone did make her stronger, able to do most things, and the tradeoff was worth it.
We saw an endocrine specialist at Duke to discuss growth hormones. They had never treated a child on prednisone with growth hormone, but with growth hormone, but we decided to start daily hormone injections. She was 4’6″ when she started and reached 5 feet after three years – with no side effects. Everyone was pleased with her growth; this was a good choice for us to make.
It was an effort going to school but she managed. She missed class a lot, but the teachers were understanding. It helped to have her identified as “other health impaired,” which allowed her more time for tests, tutors and other considerations. Her true friends remained loyal, visiting, bringing homework, and calling.
High school proved to be another hurdle. Jessica’s treatment was trial and error, and these adjustments took their toll on her education, having fun, being with friends, and taking part in activities. She struggled through these four years, but she had finally made it to graduation. What would be next?
An eye toward the future
Jessica’s grades were not at the top, but she had made great strides in accomplishing all of her work. We began to explore smaller colleges and found a perfect fit for her – a small women’s college in downtown Raleigh. She entered Peace College in the Fall of 2000 and was scared to death; so were we. She was still on methotrexate and Voltaren (a nonsteroidal anti-inflammatory drug, or NSAID) when she started school, weaning after two years. After living on campus for two years – doing well and loving it – she moved into an apartment with friends.
She graduated from Peace on May 8, 2004, with a degree in Marketing and Communications. We had a big celebration at our home because this was a celebration like no other. She’s now working part-time as a Marketing Coordinator until a full-time position is available – she’d love to be in New York. She currently lives at home until she finds a roommate.
We’ve had many ups and downs, and we’re not yet in the clear. She is in physical therapy for juvenile rheumatoid arthritis, and she has learned to warm her fingers and relax. She turned 23 in August and moved to adult doctors instead of pediatricians. I was especially anxious, as pediatricians are so gentle with younger patients, especially helpful during emergencies. We’re satisfied, though, with her new doctors and hope to continue without any complications.
We take each day and embrace it when it is good and when it is bad. She continues to go full steam ahead with all her activities. She is no longer on any medications but continues to have problems with contractures and reduced range of motion in parts of her body. We are so grateful that she has improved so much since she was diagnosed at 10. We have certainly come a long way but never alone, with our church, doctors and friends always by our side.