Alex’s difficult birth incited his mother, Brigitte Duclos, to monitor his growth and development very closely. “I experienced an extremely difficult delivery. At the time, I had no assurances that my son would not suffer any after-effects,” the young mother explains. The least that can be said is that her watchfulness paid off, because although today Alex displays very little signs of after-effects from his difficult passage into this world, his mother’s vigilance and watchfulness may have played a role in saving his life. “From the time he was two-and-a-half years old, I began to notice ‘little things’: Alex lacked coordination when running; ometimes he stumbled and fell for no apparent reason; sometimes he choked on his food,” Brigitte relates. Upon her insistence, Alex’s pediatrician ordered various tests but the specialists consulted over the years came up with nothing conclusive.
Then between December 2008 and April 2009, Alex came down with three bouts of pneumonia, two of which led to his being hospitalized. During his second hospital stay, Brigitte insisted he be given an MRI (Magnetic Resonance Imaging); he had been waitlisted for one for at least a year.
The brunt of the battle
The diagnosis was devastating. It came last Thursday, April 9. It confirmed the presence of a brain tumour of the brainstem with difficult prospects of removal. “When I heard the news, my heart sank. I couldn’t believe what I was hearing,” Brigitte relates. After much research and serious thought, Alex’s parents turned to the neurosurgical team at The Children’s. “The Division of Neurosurgery at The Children’s has an enviable reputation. Now we understand why. Never in our wildest dreams, would we have expected a neurosurgeon to give so much of his time to explain the situation and all the treatment options. But that is exactly what Dr. Jean-Pierre Farmer did from our very first visit! Based on his assessment of the morphology of the tumour and its clinical evolution, he felt there was room for hope.
Our spirits were buoyed instantly,” recalls Alex’s dad, Stéphane Lacombe. On Thursday, April 30, around 8:00 a.m., two nurses appeared to prep Alex for surgery. As they saw him off, their hearts in their hands, Brigitte and Stéphane huggedtheir son lovingly. “Love you a bunch mom, a big fat bunch,” whispered Alex. Then, accompanied by his two nurses, he bravely stepped through those well known sliding doors beyond which his parents were not allowed.
The surgery performed by Dr. Farmer, Neurosurgeon and Surgeon-in-Chief at The Children’s, lasted more than eight hours. Using brain neuronavigation technology and complex electrophysiological monitoring to reduce risk, he managed to remove 40% of the tumour, preserving vital functions such as respiration, swallowing as well as limb and facial movements. After surgery, Alex was transferred to the Intensive Care Unit. “Seeing your child in a huge bed, surrounded by equipment, his little body plugged in to all those machines, is a heart-rending sight,” Brigitte recounts. However, to everyone’s surprise, Alex bounced back rather quickly and was discharged from The Children’s four days after surgery instead of the minimum 7-day recovery period.
Patience and a positive outlook in battle
A few days later, the Pathology Department’s report confirmed Dr. Farmer’s diagnosis. It indicated juvenile pilocytic astrocytoma of the brainstem, a benign tumour, albeit hard to reach. The prognosis was indeed hopeful. The treatment protocol recommended by our specialists to wrestle the residual tumour calls for 70 chemotherapy sessions over as many weeks using vinblastine to decrease tumour mass. Alex and his parents will need to muster all their courage and patience, but Dr. Farmer is confident. Chemotherapy is expected to weaken the tumour considerably. Moreover, the team of specialists has other treatment options in the pipeline: either radiation therapy when Alex is older, even a second operation later on.
Of the 70 weeks of treatment scheduled, about 15 have already been completed. And Alex is none the worse for wear. The dosage is not very strong; he has had no side effects and has not lost his hair. He leads such a normal, active life that it is difficult to believe that he has a brain tumour. Like his friends of his age, he is entering First Grade. He will soon undergo his first follow-up CAT scan to assess the effectiveness of the treatments. The scan needs to be repeated every three months. Meanwhile, Brigitte and Stéphane are optimistic. In their opinion, the family-centred approach, which characterizes The Children’s, makes a world of difference. “We have complete confidence in the expertise of Dr. Farmer and Dr. Nada Jabado (Alex’s oncologist) and the nursing staff. Their team approach is most reassuring. We know our son is in good hands, and we have a confident, positive outlook for the future.”
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