Life changes fast. Life changes in the instant. – Joan Didion
Last Sunday my existence was forever altered when my husband Craig and I were hit with the devastating news that our beautiful 21-month old boy Gavin had a brain tumour.
Gavin hadn’t been feeling well for a few weeks. Looking back, there were signs that something wasn’t quite right. I couldn’t shake the feeling that his symptoms added up to something worse, but I had no idea what. He walked with his head tilted to one side for awhile, it seemed to be torticollis, a minor neck problem that we tried to treat with chiropractic visits. And then everything started cascading – he complained of pain around his ear and head, he experienced morning nausea, throwing up every day for 10 consecutive days and having little appetite. He was diagnosed with an ear infection and prescribed antibiotics. He had periods of good energy followed by lethargy and listlessness. On Sunday the 13th he frightened us by vomiting continuously for several hours when we were out of town at the family cottage. We had a terrifying drive back to Toronto as Gavin slept, paper-pale and breathing shallowly, and then spent 6 hours in the emergency room of our local hospital, before finally being treated for “flu” and dehydration, and turned away.
Throughout the following week, I kept a close eye on him and spent a lot of time on the couch watching DVDs with him, something he’d rarely been permitted to do before. I was dismayed to find that his balance completely departed, and he fell over constantly, often hurting himself in the process. He lost interest in his normal activities and didn’t want to go out anywhere. I finished a round of antibiotics on the advice of our pediatrician, and wondered if he was suffering from some sort of allergy or inner ear infection. Finally, last Sunday, after 3 trips to pediatricians and one to emergency, we decided to take him in to the Hospital for Sick Children in Toronto.
On the way to the hospital he seemed to perk up and wanted some food, but as soon as we arrived rapidly went downhill. Our doctor in emergency was patient, empathetic and thorough, meticulously noting everything that we told her. I felt like this was a doctor who was finally trying to see the big picture. She ordered a CT scan “to rule everything out.” Which meant Gavin had to have an IV put in. It took Craig, two nurses and I to pin him down and several tries before it was in properly. Amazing that a toddler weakened by two weeks of puking was able to kick, scream and hit with such vigour. But that’s what we’ve learned about our little man, he’s truly a fighter. With the IV in, he was exhausted and slept through the CT scan. I watched the technician as I stood by the machine in a lead apron, but found I couldn’t get a read on her facial expressions. As we left she said, “Have a good night!” And we both said, “Thanks!”
We wheeled Gavin back through the halls to emerg., and I went out to phone my sister and get a drink. When I came back in Craig was sitting next to Gavin holding his hand, but quickly got up and came towards me. The look on his face sent my stomach down to my shoes and before I could say anything he wrapped his arms around me and said, “Gavin has a brain tumour.” Everything that happened after that is vague. I have no idea what I said – shock buckled my knees and I felt a wave of nausea sweep through me. I kept gasping and felt my face working in sobs but no tears came. Tears are the body’s way of releasing the mind’s grief, and I had no tears for countless hours after I was told the news. My baby, my beautiful, sweet, cheerful and funny little baby had this thing growing inside of him, and we’d had no way of knowing.
We were told a lot of technical things about the tumour, where it was, what it was doing and affecting and what the possible outcomes would be. The only known was that surgery would have to be performed, perhaps immediately, but we would not know if the tumour was putting pressure on the brain until after an MRI. A very detailed MRI was needed to perform the surgery in order to make a plan for extraction. We learned all of this from various doctors, some teary-eyed and others stoic. We fell apart, and tried to pull ourselves together for Gavin. My whole body felt icy and shook constantly, to the point that my teeth chattered. We waited in emergency to go to MRI, and I kept nodding off only to wake up still in the midst of this nightmare.