In 1983, I met Jeff - an incredible, bright, energetic 7-year-old boy who was diagnosed with Ewing's sarcoma. Ewing's sarcoma is a cancer that usually occurs in the long bones of the arms or the legs. It usually occurs during adolescence, so Jeff was very young to be diagnosed with Ewing's sarcoma. The tumor involved all of his femur, or thigh bone. With bone cancers, the only chance for achieving long term remission or cure includes surgical removal of the tumor and about a year of chemotherapy treatments. For some teenage patients, a titanium rod or a cadaver bone is used to replace the affected bone, resulting in 'limb salvage' surgery and the retention of the young person's leg. However, in Jeff's case, the oncologic orthopedic surgeon determined that, due to the size and location of the tumor and Jeff's age, the only option was to amputate his leg at the hip. My job was to prepare Jeff for the surgery. More about that in a future post. For now, I need to stay on the topic of 'the family affair'!
Jeff was the youngest of three children, with thirteen and fifteen-year-old sisters. His mother was a stay-at-home mom who spent all of her time at the bedside of her little boy, and Dad was a successful business man who visited Jeff and Mom in the evenings. They were a strong family, and they put all of their focus on Jeff and his needs. Their large, extended family.was there to help, also.
Over the course of the next year, I had a lot of opportunity to observe Jeff and his family as he spent most of the year in the hospital due to complications of his disease, surgery and chemo treatments. His spirit was indomitable; his zest for life never wavered. Nor did his family's support. Mom, literally, did not leave her son's side for any reason. At one point, Jeff was in the hospital for 7 weeks and Mom did not go home during the hospitalization, even though home was only 15 minutes away. Dad came straight to the hospital from work and stayed until about 10:00 p.m.. Jeff's sisters came to the hospital a couple of times a week for about an hour. Extended family members provided care for the sisters, cooked meals, mowed the lawn, shoveled the snow, did Mom's Christmas shopping and much more.
And Jeff's family began to fall apart. Mom was exhausted and overwhelmed with her son's declining health. She had lost her connection to Dad and to her two daughters. She knew that had happened, and expalined over and over again that she had had no choice; after all, Jeff needed her constantly. Dad began to become more distant from his family. He frequently encouraged his wife to come home for a few hours and to start spending time with her daughters again. After a few months, he quit coming to the hospital every evening and only visited every once in a while. Jessie, the thirteen-year-old sister, began to experience declining grades and also started acting out at school and with extended family members. Jessie and Dad became very close throughout Jeff's illness. Fifteen-year-old Erin became extremely rebellious with Dad. She started hanging out with a different group of kids, a group that had a reputation for getting into trouble. Dad caught Erin sneaking out of the house several times, and one time he could not find her anywhere for 2 nights. Dad called the police and reported her as missing. After that, Erin refused to even speak to Dad. Erin finally confided to her mom, at the hospital one weekend, that she had been experimenting with drugs and that she was pregnant.
When I met Jeff and his family, I was at a very early stage in my career at the hospital Surely, I thought, their problems were very unique; most families do not have these types of problems. However, I soon learned Jeff's family displayed very typical issues of a family with a seriously ill child. Of course, some families exhibit far fewer challenges and some exhibit even more. But it is universally true that, when a child is diagnosed with a serious illness, the whole family suffers in some way. The impact of the experience on the family cannot be eliminated, but there are ways to lessen the impact.
Today, we ensure that the ill child and their family members receive support along the way. Palliative care is providing support for the journey. Palliative care focuses on the quality of life of the patient and family in the physical, psychological social and spiritual realms of existence. When palliative care starts at the time of diagnosis, it is possible help families predict difficulties and to avoid or lessen the effect of most of them.
Our team of physicians, educators, social workers, psychologists, nurses and more are caring for families in a very proactive manner, enabling them to predict where their pitfalls may lie, and providing them with the tools that can enable them to avoid those pitfalls. It is very difficult work for families, but when people love and are committed to one another, positive outcomes do occur.
Almost 30 years later, I am amazed at how much better understand children, families and serious illness than we did in 1983! Palliative care used to be synonymous with a type of care provided at the end of a person's life to help ensure a "good" death. Now, we know that attention on palliative needs of a patient and family ensures the best quality of life for all, whether the patient proceeds to cure; transitions to adult healthcare; or progress to end of life.
I am proud to be part of this bold, new form of care! I do not often see families with the complications experienced by Jeff's family. I wish we would have known then what we know now!
No comments:
Post a Comment