Wikipedia informs me that “deglutition” is the scientific word for swallowing. Huh. You learn something new every day.

We had an appointment with the feeding clinic at Bloorview earlier this week, which explains why I’m parsing Wikipedia entries on swallowing and dysphagia. You may remember that Gavin continues to suffer from slight dysphagia. (swallow difficulty.) His last hurdle is thin liquid. Although it is counter-intuitive, thin liquids like water or apple juice are actually the most difficult things to swallow with Gavin’s condition.

Clearly, I haven’t been blogging much of late. I’ve had my hands full with other ridiculous life challenges and I’ve been taking a break from blogging, correspondence and housekeeping. Judging by the real and metaphorical dust bunnies around me, I’ve got some catching up to do.

But first I thought abeanslife readers might be entertained by some recent observations from the chatterbox. Every day he says something that amuses me, surprises me, or lances me straight through the heart. Enjoy.

I’m processing some new information. Clinic days are hard, and I feel pretty emotionally fragile after 5 hours spent at the hospital today. Overall, it was a good day and we are still happy to celebrate Gavin’s great scans of last week. But - this morning in audiology we learned that Gavin has, in fact, suffered some hearing loss.

I am trying not to react to this news like our world is about to fall apart. Since the beginning of treatment, I have been constantly reminded that “in the grand scheme of things” hearing loss is not the worst that could happen. Of course that is true, but it’s still difficult to accept. I was always so happy and triumphant that Gav’s hearing tests came back normal.

The results are in and Gavin’s MRI from today looks great. We are busy celebrating at home while Gavin has a well-deserved rest after a busy day.

As ever, many thanks to our family and friends for your never-ending support and love. We feel incredibly lucky tonight!

I am in the clutches of a particularly bad case of scanxiety. We finally got a date for MRI - it is scheduled for next Tuesday morning, January 24th. It comes the day after our six-month check-up with Dr. Dirks of neurosurgery. I would have preferred to have the scan done before the neurosurge clinic date but hospital scheduling is what it is. I am anxiously awaiting both appointments.

I’m not really sure why I feel so insecure this time around. I’m asking myself if I have seen any frightening symptoms, and the answer is, Not really. I mean “strange behaviour”? I’d like to meet a three-year-old who doesn’t act oddly. Most of the time. Vomiting, headaches, gait changes, lethargy? No.

Cancer. The big C.

Tumours, chemo, radiation, side-effects. All of it is inexpressibly ugly and sad. We spend our lives fleeing it, and living in fear of it. And yet it touches all of us - we all have known someone who has succumbed to a cancer of some sort. We also all know someone who has survived, sometimes for many long and healthy years of life. When it touches the people closest to us, our children, our parents, our brothers and sisters and best friends, it wounds us. When it invades our own bodies, it’s a betrayal of the highest order. We think, how? How could my body be doing this to me?

Yesterday marked one year since Gavin was released from his stint in the ICU and was able to begin the process of recovery. I remember walking beside his bed as we wheeled him back to his old room on 8B, which was packed to the ceiling with toys and gifts from the Gavinator fan-club. In a very surreal moment, as we crossed the Atrium, a burst of music drifted up to us from the main floor, where a visiting steel drum band was playing Christmas music. Has there ever been an instrument so full of infectious joy as a steel drum?

Gav wasn’t an early walker, but nor was he late. He took his first solo steps in a hotel room in San Francisco a few weeks after his first birthday. He then spent a long flight to Sydney tottering up and down the aisles of the plane. A few months later, he was walking all the time, but not stable. I was concerned enough to take him to our pediatrician to note that he seemed unbalanced in some way. She didn’t see anything alarming in his gait, so we decided to see if things improved, and they did. Several months after that, there was a quick deterioration and we found ourselves in the ER one June evening learning the worst news of our lives. I was later told by neurosurgery and neuro-onc that it was not likely that my earlier fears were due to tumour growth. Gav’s tumour was fast and aggressive, and probably grew to the size that it did in about three weeks.

Gavin and I, and Bubby and Da went to hospital this afternoon to meet with the neuro-onc team about yesterday’s MRI. I am happy and relieved to report that the scans of his brain and spine came back clear! There is no better feeling than knowing that this cancer has not returned and that I can now shelve that terrible feeling of dread until January. I think the doctor on service was supposed to call me last night - at least, that’s what I understand from talking to our contact nurse. For every other scan, we’ve heard from the team either by email or phone that the scan was clear, so I was terribly worried that they were bringing us in to deliver the bad news in person. Sigh of relief, all is well. It was a short two-hour visit to clinic, everyone is pleased with Gav and we celebrated with seasonal pumpkin lattes and cookies afterwards.

I love autumn. Flaming fall leaves, pumpkin pie, jack-o-lanterns. As blue skies and sunny days give way to chilly nights, we Canadians celebrate Thanksgiving on the second Monday in October. Like our American friends to the south, the holiday is mostly about stuffing ourselves with turkey and potatoes, minus the Pilgrims at Plymouth bit.

Pumpkin Family

This year, Gavin, Craig and I celebrated Thanksgiving with our family at the cottage. Bubby and Da were there, plus the Vancouver contingent. It was a weekend of spectacular sun and record-breaking warm weather. We hiked through Hardy Lake, canoed, picnicked, and jetted around in the boat for the last ride of the season. And stuffed ourselves with turkey and trimmings. Bean busied himself playing with everyone and carving pumpkin tea-light holders with Bubby.