Merilee Brown, MD CCFP, Family Medicine Teacher, University of Toronto, Queen’s University, Rural Ontario Medical Programme, Recipient, Associated Medical Services - Mimi Divinsky Award
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It started innocently enough with headaches. My four-year-old neighbour, David, was having headaches. Then he had blinding headaches: headaches that made him cry out in pain and sleep over 20 hours per day. He was taken to see his family doctor. He went for blood tests. His family doctor couldn’t find the cause of his headaches. He went to the pediatrician. He went for a CT scan which we were told showed nothing. The pediatrician said the headaches and the sleeping were behavioural. David kept getting worse. Then they saw another pediatrician who ordered another CT scan, which showed a baseball-sized tumour in his sinus cavity. Rhabdomyosarcoma. One in a million. They asked the radiologist to look at the first CT scan again — sure enough, the tumour was there, but in the sinus, not in the brain where the radiologist had expected.
David went to The Hospital for Sick Children (Sick Kids). He had biopsies. His family met with the team. The tumour was inoperable — too close to the pituitary gland. They discussed the plan with the Sick Kids team: radiation to shrink the tumour, then chemotherapy. The next year-and-a-half passed in a haze of radiation treatments, consultations, blood tests, chemotherapy, hospitalizations, and medical appointments. There were good times: lunches at McDonalds, camping, going to the cottage with
friends, a trip to Disneyworld, Dairy Queen chocolate soft serve, meeting Robert Munsch. David accumulated “bravery beads”: a string of beads representing every blood
test, procedure, radiation treatment and chemotherapy injection. The really painful procedures had special beads. David’s bravery beads were over 20 feet long, punctuated
with lots of “special” beads. He discovered amazing talents: at age 5, he could swallow
enormous pills. He had a maturity far beyond his years and was always concerned about the feelings of others despite his own suffering.
David’s bravery beads were over 20 feet long
Through this journey, there were losses. David first lost his hair, then his teeth had to be removed as the chemotherapy slowly rotted them, causing him pain and frequent
infections. He lost friends he had met in hospital to their diseases. Eventually, as the tumour progressed, it pushed on his optic nerve and he lost his sight. For David, this was the worst loss. He “really, really, really, really, really, really wanted to see colour” and told his mother so every day. Then, it happened. Sick Kids had no more treatment
options to offer. The tumour continued to grow. David was tired of treatments that made him ill, tired of hospitals, tired of tests, tired of doctors. He and his parents decided that there would be no more tests, no more treatments. He would come home.
Coming home meant that he would need someone to take care of him, a physician who could tend to his needs, help ease his pain, check in on him regularly. Since I was one of our small town’s palliative care physicians and I lived five doors down the road from David, the job fell to me. I was terrified. I didn’t know anything about pediatric palliative care. I was terrified that I would not be up to the task. This was a child that I had
known since he was born, a child that I loved. Sometimes we are called upon to do something that takes us beyond what we think we are capable of, beyond what we are trained to do, beyond our level of comfort. Taking care of David was my call. After all,
there wasn’t really anyone else to do it. I just hoped that I would be “good enough.”
So I started to go over to check on David and have tea with his parents. I drank a lot of tea over those few months that I took care of David. I talked to lots of people: his caregivers at Sick Kids, his oncologist, the palliative care team, colleagues who were palliative care “specialists” — not regular family physicians like me. Sometimes their advice was really helpful, sometimes it wasn’t. So I muddled through the best I could, hoping that I would be good enough to help David. For a while, things went well. He had very little pain and went out every day to Dairy Queen for chocolate ice cream. Friends and family and neighbours and church members came to visit and drink tea. David
had a lot of good days and a few bad days. The tumour continued to grow and started to encroach on his airway. At first, it got better with some steroids to shrink the swelling, but the tumour kept growing. It started to make him short of breath. I talked to him and his parents about what to do when the tumour started to close off his airway. I talked to Sick Kids. I talked to my local palliative care team. I talked to anyone who would listen.
Everyone agreed that to allow the tumour to block off his airway would be unacceptable. We decided to use midazolam, a medication which would make him unaware of the awful tumour impinging on his throat, and hopefully give him peace. I had no experience doing this at home. I had used a continuous midazolam pump in hospital when there
were end–of-life symptoms that we could not control in other ways. I knew what I was asking of David and his parents. I was asking his parents to take away David’s ability to respond to them, to say that he loved them. I tried to arrange the midazolam in our local hospital. I was told in no uncertain terms by the nursing administrator that this would not happen. The nurses in hospital were not trained to do this. Like I was? Nevertheless, I
had made his parents a vow that I would do everything I could to allay David’s suffering.
So I talked to Home Care. Apparently what was impossible in hospital because the nurses were not equipped to administer and monitor the drug was not a problem in the home with little or no nursing care or monitoring. So we started the midazolam, initially at a woefully inadequate dose but slowly titrating up until he was finally at peace. Two days later, in the arms of his mother and father, accompanied by his pastor reading the 23rd Psalm, his church elders, and me, David died.
Sea of orange
His funeral later that week was a sea of orange. Orange was David’s favourite colour, his symbol of personal triumph over the cancer. So we all wore orange in honour of David’s indomitable spirit, which could not be quelled by death. I still wear my orange shirt, purchased in honour of David. For me it symbolizes something different – the
spirit of muddling through, of being just “good enough” when called upon to go beyond what I felt I could do. Several years have passed since David died and I still have tea with his parents from time to time. Reflecting back over that bittersweet time, I think that by muddling through, doing the best that I could in a difficult situation, that I might just have been “good enough.”
The Author: Merrilee Brown MD CCFP is a family physician who does office practice, emergency, obstetrics and acts as a palliative care consultant. She is an award winning teacher of Family Medicine to medical students and residents for the University of Toronto, Queens University and the Rural Ontario Medical Programme. In 2008, Dr. Brown became the first winner of the Mimi Divinsky Prize in Narrative medicine as presented by the Canadian College of Family Practice. She lives and works in Port Perry, ON, is married to Steve Gray, an accountant and coffee roaster, and has two children, Alastair, and Sophie. She also is known as a great baker of chocolate chip cookies.
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