As October flies past, I’m looking back over the last few weeks with continued thanks that Gavin has been mostly well. His episodes have ratcheted down from daily to a few times a week. He manages them, having short lie-downs at school or home until they pass. I still have no idea what could be causing them, but with a clear MRI under his belt, our major worries are on the shelf.

On Labour Day weekend, the Gavinator blew out 5 candles on his Iron Man birthday cake.

His wish was fulfilled to celebrate his special day together with the family at my parents’ cottage in Muskoka. In keeping with tradition, there were many presents to be opened and fun to be had in the water on the last weekend of summer.

Emotions were running high after the failure of ICP monitoring and the immense stress Craig and I had been under after the previous few days in hospital. But Bean took the whole episode in stride and was only concerned that he wouldn’t be able to try out the “Bongo” - the new water trampoline that Bubby had recently acquired. So although he had a fresh incision that wasn’t supposed to get wet, we solved that problem by wrapping his head in plastic wrap and topping it off with a hat. Bongo time!

I am trying my utmost right now to quash some very discouraged feelings I’m having.

The good news is that we were discharged from hospital today. The bad news is that we are no closer to understanding what it is that is plaguing Gavin.

The past two days in hospital passed quickly, and we were lucky enough to have visits from loads of friends. (Thank you, thank you, lovely people!!) Gav feels that he has really hit the jackpot as everyone who came brought fun presents, so he has been busy bragging about all of his new Lego. Despite being tethered to a monitor, he dealt with all of it well, and loved keeping the unit volunteers busy playing with him.

All went well today. If by “well” you mean that there is now a wire poking out of the top of my son’s head. Despite how squeamish that makes me, we are handling it.

We hit the ground running at 9:30 this morning with a visit to the blood-work lab. I didn’t want Gav to get any more upset than he needed to, so we withheld that information until the last possible second. With every poke Gav gets from a Sick Kids phlebotomist, I radiate gratitude that they are so very slick and so very good at their jobs. That hardly hurt at all! said the relieved Bean.

The Gavinator is watching Shrek. He is feeling most terribly yucky today.

We went to the hospital this morning, first to meet with neuro-onc., just cuz, and then for a 10:45 appointment with Dr. Dirks. I thought it a tad ambitious that our contact nurse booked us for a 10:00 meet with them, to supposedly have us downstairs 45 minutes later.

When I have never, ever, got out of cancer clinic in less than 2.5 hours. So I showed up half an hour early. And sat there for over an hour. And then left without seeing anyone to go to the appointment with Dr. Dirks.

This morning started off as it usually does, with my son wandering into my room around 7:00 and jumping into bed with me for a snuggle. As always, I was barely coherent, kicking my way to the surface of consciousness as I got the report on his night’s sleep. His “awesome” dreams, his nightmares, his thoughts. Eventually, he dragged me out of bed and we made our way downstairs for breakfast.

With the golden light of August streaming through the windows and jacketed cool mornings, yes, we know summer is making its way to the door. There are a few scant weeks left before school is back in full swing, with Gav celebrating his 5th birthday on the very first day.

If it weren’t for the 5-day holiday we’ve just returned from, I’m not sure if I would feel that summer has happened at all.

My son and I are being hermits today. We are getting pretty good at it, with Gav lying on the couch and me restlessly prowling around the house.

I can’t say that his health has improved much since my last post. If anything, in some ways, things have taken a definite downward turn.

He did make it to the last day of school, and then had a blissful almost event-free 10 days. Then a bout of motion sickness in the boat at the cottage, a fall and a cranial collision with his cousin, and the next day, a little over a week ago, the arrival of some frightening new symptoms.

Here is one thing I’ve learned: when you are asking yourself the question, “Should I go to the hospital?”, 99% of the time the answer is YES. I’m sure there are many doctors who would disagree with me, having had their time wasted by too many kooky hypochondriacs, but in general only good can come from making the decision to go.

So. I’ve had to make the decision to go twice in a 24-hour period.

Is the number of days that have passed since D-day.

Good days, bad days, awesome days, terribly awfully crappy days. Mediocre days that were completely ho-hum. Hospital days. Days of sunny skies and days of ridiculous freezing Canadian weather. Laughs and fights and fun and learning so many new things. Family, friends, and the wonderfulness of holidays and ordinary kicking-around-the-yard days. Lying face-down on the bed weeping and wanting to scream from a mountain-top, “WHY ME?” days. Incredible days basking in the wondrous beauty that is our world. Days of feeling so blessed for all the lovely people who love me - yes, you.