Excerpt from Giants Among Us: raising a giant in an average-sized world
Things Happen for a Reason – Part 1
It would be November 2009 that through a series of coincidences, connections and calamities we finally got Adam seen by the top Canadian expert on endocrine diseases and cancers. Who would have believed that one of the physicians who authored the American Medical Association’s guidelines for the treatment of gigantism and acromegaly worked out of a Toronto hospital? Adam was months post-operative when we got to Dr. E____ but his participation in this medical journey has been paramount.
I had first heard Dr. E___’s name years earlier when my hair wizard and chic-pal Vicki told me he was caring for her mother, diagnosed with acromegaly in her fifties. The doctor’s name meant nothing to me at the time, (nor did his discipline endocrinology, for that matter) a year or two before Adam’s tumour was found; but when I needed an endocrinologist, and Vicki’s experience with early symptoms of the disease, I had both. She diagnosed Adam. Literally. What were the chances that my hairdresser knew everything about such a rare disease? But she did.
This was one of those moments that could make a person believe in a higher being, in fate, or serendipity. This was way more than just good luck. Although having a sick child, I now know, can make a parent believe in a lot of things they might not have considered valid before. It if had been dumb luck, I would have taken it gladly any way.
It was January in 2009 when I showed Vicki Adam’s grade 10 school photo and she reacted by bluntly saying he had the same disfiguring disease as her mother. A month later when I took Adam to his pediatrician to discuss his severe joint pain and headaches, I had some warning when Dr. Tobin alluded to the same diagnosis. I knew where the probing questions were leading because I had heard acromegaly from Vicki and followed up our talk with an Internet search that is when I learned about gigantism. I remember the day another month or so later when I returned to her hairdresser’s chair and told her that Adam’s pediatrician confirmed it, that he indeed had the worst form of the disease and a very large, barely operable tumour. Vicki was, and remains today, sorry that she was right. Had it been a different client, she tells me, she might have not said anything for fear of risking offence. Her comfort with me, and perhaps her trust of my even-temperedness, resulted in Vicki saving us time, very precious time.
One of my first actions after his formal medical diagnosis, using the internet basics I had gleaned, was to contact the largest pituitary medical research facility, located in California. Canada, I was disheartened to learn, has nothing of the kind. It was not simple getting an email for a real person in a large administrative complex, so I eventually found the name of the top doctor and, I do not know where I found the guts, but I just emailed him, copying the format of the other institute emails. Dr. Schlomo Melmed had his second-in-command respond by phone to my plaintive email within five minutes of my pressing send and after talking symptoms with me, tell me that my son was fortunate (to live where we do, he luckily qualified himself quickly) because the top Canadian expert lived near us, who was an endocrinologist who himself trained with Dr. Melmed in California. It was Vicki’s mother’s Dr. E____.
It is worth telling here that another “it happens for a reason” situation got Dr. E____ for Vicki’s mother, which in turn, got the doctor for Adam. Vicki’s chair was fortuitous for her mother years before Adam’s health was the subject of salon-time chatter. Insert comments about how women tell their hairdresser everything here. Dr. E___’s predecessor in the endocrine clinic at Mount Sinai Hospital was a retired gentleman who had been taking his elderly, nearly-blind wife to Vicki’s salon for years. When her mother was diagnosed with acromegaly, the adult form of gigantism, the client’s husband got her to Dr. E____ right away. Had the lovely, petite woman I had seen many times getting her hair done with her husband guiding her to the chair by the elbow not appreciated Vicki’s hairstyling talent, my boy might not have gotten to Dr. E____. But that was still difficult months away.
After the phone call from California I was armed with the names of the best endocrine expert in pituitary tumours (and to my horror, pituitary cancers) and the neurosurgeon with whom Dr. E____ worked exclusively. But that having of information was, in and of itself, no solution at all. It was not like I could just stroll into his office in one of the huge downtown hospitals or his classroom at the University of Toronto medical school, introduce myself and say “have I got a case for you, Doc!” The system was about to teach me how patient advocacy works, and the true and multiple meanings of the word ‘patient’, the hard way.
I learned that Dr. E____ accepted patients only very selectively. In fact, research was his primary focus now. Adam’s favourite doctor, his pediatric endocrinologist, Dr. Kirsch told me that she would need to refer, and that I would need to really “stack the deck” in Adam’s favour in order to get him into Dr. E____’s pituitary clinic. And, she counseled, just a referral would not likely be enough. “Stacking the deck” in medical parlance means you have to be diagnosed with something rare, that is further distinguished by scientifically fascinating anomalies, be given a very limited life expectancy, and it would not hurt to know a lot of the doctors’ colleagues and supply reporting letters from them. I knew I was not going to be able to get Adam in front of Dr. E____ before the scheduled surgery (at the other hospital) and for the first of what were innumerable instances, I had to choose the best of possible and essential outcomes. Surgery within a couple of weeks with the neurosurgeon I had found, and under the care of that hospital’s staff endocrinologist was option one, or wait months to be taken on by Dr. E____, go through fresh testing, office visits and meetings with his team, clinging to hope of access to his surgical colleague. Adam did not have months. He was losing his vision. The sooner the tumour was out his vision damage could be arrested and he might stop growing. He had been growing at a rate of an inch every two or three months, so a few weeks mattered greatly to his health and overall outlook.
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Patti M. Hall is an author, educator and writing coach living in Bradford, Ontario with her two very tall sons. Hall is a non-fiction writer specializing in the stories of individuals who demonstrate resilience in the face of trauma and personal challenge. She is the author of two manuscripts awaiting publication: Promises Never Die: Living Your Best Days Even Through Death and Dreams Under Construction: The Life and Legacy of John E. Bahen. Promises Never Die tells the story of a 46-year-old man dying of advanced pancreatic cancer. Hall is currently working with a publisher on the first edit of her newest novel, Giants Among Us: raising a giant in an average-sized world, is her own story about living and coping with child who has a rare, stigmatizing, life-shortening disease.
An instructor and coach of creative and memoir writing, Hall has more than ten years experience supporting writers in telling the story they were born to write. Hall is a member of the International Association of Journal Writers (IAJW), the National Association of Memoir Writers (NAMW), the York Region, Durham Region and Simcoe County Writer’s Communities (YRWC, DRWC, SCWC) and the Bradford West Gwillimbury Writer’s Circle.