‘A book about us’
Since passing at age 15, a medium urged her to write a book about her son
Josh Allan Mickelson was born Saturday, Nov. 28, 1981, in Warren, with a chronic, life-threatening lung disease.
His mother, Debbie Sumner, chronicled his life, their transplant experience, their normal day-to-day routines, and how they dealt with his lifelong challenges and his death at the age of 15.
It’s now a book, “Taming Josh’s Dragons: A Mother’s Tale of a Life Too Brief,” published in December of 2019.
“This is the first time I’ve written,” said Sumner. “It took me eight years to get it down. It was very difficult due to get medical records that I requested. There were a lot of things in there that I wasn’t aware of and had to push (it) aside multiple times.”
Sumner retired from Warren General Hospital six years ago following a 43-year career in the medical imaging field. She began training at Hamot Hospital School of Radiologic Technology, Erie, at the age of 17. She officially began her career at Warren General Hospital when she was 19 and was promoted to a management position at age 29.
“(But) this is the story of Josh, a courageous child who struggled his entire life with a chronic, life-threatening lung disease,” said Sumner.
Josh was transferred to Buffalo Children’s Hospital, Buffalo, N.Y., within hours of his birth, where he remained for the next four months. While there, he underwent many medical procedures including an open lung biopsy that helped finally reach a diagnosis for his lung disease. He underwent a double lung transplant at 13. Four months later, a lung biopsy diagnosis of Obliterative Bronchiolitis came back.
Obliterative Bronchiolitis is rejection following organ transplantation from another human being, a condition that develops in almost 50% of all patients who receive a lung transplant from an unrelated donor.
Josh passed in May of 1997. In March of the following year, Sumner woke in the middle of the night with lines rhyming in her head. She got up and wrote a six-page “ode” to her son. This ode can be found in the back of the book.
Fourteen years following Josh’s passing, Sumner visited a local medium who told her that Josh was communicating that she needed to write a book.
“‘A book about what?,’ I asked, (and) he said, ‘a book about us,'” said Sumner.
“After losing Josh, it naturally was very difficult to heal, but I was eventually able to find peace by facing my grief in my own way. I hope, through this book, to help others in similar circumstances.”
Sumner hopes her book will help parents of a child with a life-threatening illness, parents of a child who requires or has had a transplant, patients being considered for transplant, organ and tissue donors and their families, organ and tissue recipients, families who have lost a loved one following a transplant, families who have lost a loved one on the waiting list before a donor became available, patients on the transplant list, the courageous people on the entire spectrum of organ and tissue donation and transplant, parents who have lost a child and those dealing with grief.
A lot of people.
“I hope my explanation of how I handled it will help others,” said Sumner.
In addition to her and Josh’s experience, her book also includes information from the Center for Organ Recovery and Education (CORE), information about organs and tissues that can be transplanted, myths about transplantation, and information about living through transplantation and donation.
“There’s a lot of information in the book that will hopefully be helpful for a lot of people.”
Sumner has also started a Transplant Support Group — Close to the Heart — established in memory of Josh and to help others living through transplants and donations.
A copy of her book has been donated to each of the Warren County libraries.
“I will never forget Josh,” said Sumner. “I’ve had a lot of comments from people who knew him, like teachers and people he met, who were impressed about how he handled, in spite of his disease, life and went on and was kind and courteous to others. It’s very rewarding to hear that.”