A Big Three Weeks

Wow. Okay, where do I begin?

First. Beanie is now 4 years old! The family gathered at the cottage to celebrate on Labour Day weekend. Auntie Lauren and Uncle Duncan flew from Vancouver to be with us. There were boat rides, hikes and canoeing. There was a mountain of presents. There was a Spider-Man cake, hand-crafted by Craig. There were swims, great meals and no mosquitoes. There was star-gazing. There was wine. There was play.

On Thursday Aug. 30th, we had a long-standing appointment with Nephrology at 1:30 to discuss Gav’s hypertension. The week before I’d been hassling MRI again for a sometime-in-September appointment. Now that Gav is a certified expert at holding still for scans, we no longer need sedation, which bumps us up the appointment list. So it was a shock when MRI called booking us in for that same Thursday the 30th, four days before Beanie’s birthday.

My initial reaction was NO I can’t handle this stress before Gav’s birthday. But I took the appointment, and decided that we were going forward, sure that the scan would be clear.

So we went to Nephrology and talked blood pressure. In May, Bean experienced a sudden dip in BP reads, and the Nephrology docs advised us to hold meds but continue to take daily reads. In those last few months, Gav’s reads have remained stable, and he’s started to become seriously cranky with twice-daily BP.

With the MRI looming ahead in the afternoon, it was hard to focus on what the doctors were telling me. Wait, what? Gavin’s blood pressure is completely normal? We no longer need to take reads? See you again in TWO years?! A completely unexpected gift. With happy tears I took Gavin off to MRI.

It is a weird thing, when something medical goes on for a long period in your life, and it suddenly resolves, you can’t quite grasp that these docs don’t need to see you anymore. I remember this feeling from when Gavin got discharged from Chest, I couldn’t really understand that his lungs were now okay, and were going to continue to be so.

I’m looking forward to this feeling when the team tells us he no longer needs scans. But that is still many years away.

In MRI things went awry. Getting IVs for Gavin is never fun, never simple, and never just takes one poke. Three pokes, three nurses, one walk to calm down, a screaming and hysterical Gav and finally it was done with a few minutes to settle before being taken to the machine. He went off with Daddy and Shaun the Sheep for company.

This was MRI 2 with no sedation and he nailed it. They got great, clear pictures and his kidney function was good enough to use contrast this time.

The next day I hovered over my phone going, “Ring, ring!” Finally, it did. Lindsay was on the phone to say the preliminary results were in and scan was stable. That evening I spoke with Dr. Huang and she was really pleased with the results too. Another huge sigh of relief and we carry on until December. Uncle Duncan showed up from the airport and we all jumped in the car to head to the cottage, consciences clear and anxiety at bay for another three months.

The following week was our clinic appointment. I may have mentioned before how I loathe clinic. The endless hours spent sitting around – the one hour wait with a four-year-old in an examination room. Gavin is usually in a state of total nut-ness by the time we see the doctor and I try to discuss Gav’s health with my son flinging himself off of every surface in the room. This visit was no different, and my discussion with the doctor left me disheartened. We have four neuro-oncology docs and they have vastly different personalities. The one I spoke with that day is the most conservative of the bunch, the one who (it seems) is not quite convinced of Gavin’s super-powers. He’s sparse with his praise. It saddens me, because meetings with him rob me of my elation and pride over Bean’s successes.

But, this is the road. As mother to this child, I have to stay focused on what’s important and not get caught up in frightening stats. I need to be the biggest believer for Gavin, no matter what one doctor’s professional opinion might be.

With that behind us, the next big event was… SCHOOL!

He started on Wednesday the 5th and wore his Spider-Man shirt for good luck. He was so excited, and didn’t shed a tear. Neither did I. I watched with happy pride as he marched into school with his class-mates. I was told long ago by my friend Christine to picture him on his first day of school. I have, many times. That day has finally come and it feels incredible.