Holding Steady

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.

October 7th found us in clinic, days which, as you know, usually leave me frustrated, anxious, or both. This time was no exception. One of the staff doctors in neuro-oncology has the special ability to instill fear and anxiety in me, partly due to painful memories, and partly due to the fact that I think he’s simply seen too much, and can no longer believe that everything will be alright, with anyone, ever. So though I should be leaving these appointments in a celebratory frame of mind, I often don’t, but feel the shadow of doubt cast over my certainty of Bean’s wellness.

Any cancer parent knows that our fears and doubts are our constant companions. We can choose to let them rule us, whispering in our ears day and night, or we can keep them in a small, quiet box,  firmly ordered to just STAY THERE where we can keep an eye on them, knowing if we open the lid even a crack, they will burst through and start scratching apart our joy.

To keep my joy intact I know I have to watch myself well, eat well, sleep well, go to yoga, visit the Buddhist temple a couple of times a week and breathe light. I need to surround myself with people who broadcast positivity and whole-hearted belief in Gavin. There’s just no room for anyone who does any less. There should never be room for anyone who does any less – but I consider myself blessed to have the most beautiful people in my life, family and friends both.

To remove one of those boxed-up fears permanently, we’re getting closer to an event that’s been on hold for the last 2.5 years. The week before last, I met with plastics to discuss Gav’s upcoming skull surgery.

To that end, Gav will have a CT scan this week to properly map the defect area. For anyone who’s wondering how we got here – you may remember that back in 2011 we discovered that Gavin’s shunt had been blocked for a very long time. (Can read here) The shunt blockage caused increased pressure, which was released in the small defect left behind from surgery. Over time, the pressure eroded Gav’s skull, which was eventually reabsorbed by his body, making a small hole into a very big hole.

Craig and I chose to wait until he turned 5 to address this, as we wanted to give his skull time to achieve its majority growth, which (apparently) it now has. The hope is that we will only have to do this surgery once, and it will probably happen sometime in early 2014 as it takes several months for the plastic plate to be ordered and delivered. I’ve also learned that if  we had to pay out of pocket for this device, it would cost us a cool $10,000, so once again give a cheer for Tommy Douglas and universal healthcare.

Once the surgery is done, I will have to adjust the way I parent Mr. Gavin. The past couple of years have been spent helicoptering him in a most spectacular way, and saying things like, Watch your head, Look out for that, and BE CAREFUL, over and over and over. I’ve removed sticks and sharp objects from other children’s hands when they’ve been a little too reckless with them, I’ve leaped across rooms to cushion his falls when he stumbled, I’ve spent $1,500 on protective helmets for his head (money well spent) and I’ve worried to have him out of my sight for even a minute, knowing that things going just slightly wrong could result in another traumatic brain injury for him.

Our meeting with Dr. Phillips of plastics at Sick Kids was brief – the surgery is not a difficult one for him and he actually did the exact same surgery last week. He doesn’t foresee any issues and the time in hospital will only be a couple of days if all goes well.

Let the countdown begin!

An aside about plastic surgeons:

If you’re like me, when you think plastic surgery you think big boobs and collagen lips and crazy Joan-Rivers-faces. I never really thought about what a pediatric plastic surgeon does – because obviously they don’t really do all that other stuff.  Here’s what they do: they repair holes in kids’ heads, they fix birth defects like cleft palates, they address vascular abnormalities and repair and rebuild what is not quite right, giving children a quality of life they would never have had without access to them. They do amazing work. Work that puts their nip/tucking counterparts to shame. It’s really wonderful to have so many teams of astounding surgeons doing work at Toronto’s Hospital for Sick Children, and as always, makes me grateful to live in its radius.