Gavin now has a small bandage on his chest where the central line used to be. The bomb-squad swept in and made off with that particular time-bomb and we are awash in relief to find it gone.

Before being thrown headfirst and unwilling into the deep end of the oncology pool, I had only the vaguest notion what lines and ports were. In all honesty, I found the concept of them kind of creepy and repulsive. The thought of this catheter permanently placed in one’s chest… Well, I didn’t have to think about it much, so I didn’t.

I am anxious. This is a big week we’re having. Tomorrow, finally, after many months of waiting, we are going to be rid of the central line. Unfortunately, in order to achieve this, Gavin will have to go back to IGT and go under general anesthesia.

I’m keeping focussed on a quick and successful procedure, and hope that Gav recovers okay, as he has had a few bad reactions to some of the anesthesia meds before.

Let the sun shine in

Notice anything different? After over 10 months of tube-feeds, losses, insertions, swallow studies and endless rolls of medical tape, we have come to the end of an era.

Two days ago, the Bean’s Daddy and I came to the mutual conclusion that Gavin’s NG tubey had long outstayed its welcome. We had a brief kitchen confab with Gav, yanked the tube and dumped it in the garbage. My Bean’s beautiful face shines out at the world again, unmarred by hypafix.

Just, there are times when I’ve just thought about, on my worst day, just, you know, leaving our house and going some place. Like checking into a hotel and just being in a quiet room by myself. Just sitting in a quiet air-conditioned room, sitting down, eating my lunch with no one touching me, drinking a Diet Sprite, by myself.

– Tina Fey

What do you do? This is one of our go-to conversation starters in North America. I cannot speak for the rest of the world, but usually, within five minutes of meeting someone in Canada, he/she’ll ask you what you do. Our answers define us and give the asker an impression of who we are. Based on the answer we may continue the conversation, or glaze over and move on.

When Gavin was a wee baby, I swore that I would not expose him to the evils of television too soon, if at all. He did not respond well to “Baby Einstein” DVDs, so I took that as a sign that screen time was not for him. However, about a year ago, we somehow got sucked into the world of Max and Ruby. For the uninitiated, Ruby and her little brother Max are bunnies that were originally created by Rosemary Wells in her very sweet books about their adventures. The TV series is a very innocent and lovely portrayal of their shenanigans and completely lacks the manic shrieking so present in other kids’ shows.

As the weeks slip by, we are now beginning to live a somewhat normal life, but also to get a glimpse of what the coming months and years will bring medically. Now we watch, wait and maintain. Gavin is officially out of active treatment and back in the care of the neuro-oncology team. It has been an adjustment leaving our friends in BMT and starting Gavin’s maintenance treatment with neuro-onc. There have been many things to consider for his health, many tests to do, and many adjustments to be made.

Over the course of Gavin’s treatment, you’re going to come into contact with hundreds of nurses, doctors, and therapists. And you’re not going to get along with all of them.

– Darcy

I have decided that in the interest of fostering understanding between parents and professionals in the world of pediatric oncology, it should be a necessary component of these professionals’ training that they actually care for a child with cancer for a period of several weeks. I mean, 24 hours a day, 7 days a week, get up at the crack of dawn, go ’til you drop care. This might help some of these individuals to understand what we, as parents, go through in the months and years of our children’s treatment. Perhaps they could then understand that so much of the advice that they offer is meaningless or impossible to apply. Perhaps then they could have more sympathy with how difficult it can be to get a toddler to eat 1,000 calories a day and drink more than a litre of fluid, or collect all the urine from one day from said toddler. (That’s right, I said pee.) Perhaps if they ever had to pin their child’s arms to his sides while he screamed and shed hot tears as an NG tube was inserted, there might be more sympathy for how hard it is to have one. Maybe if they had to chase an active and curious toddler around the house and try to get him to HOLD STILL to do blood pressure reads. On top of those things, they would have to hold this child’s hand during ECHOs, ECGs, EEGs, CTs, X-Rays, and GFRs. They would have to cajole and threaten to get to appointments on time. And, they would have to feed, dress, change, bathe, play with and socialize this child. Sounds like a good job, huh?

Today has been mixed for me. I find lately that when some sort of hurdle is thrown in my way, my ability to leap over it emotionally has been drastically reduced, and I have a big stumble before I’m able to get up and move on. I seem to be suffering from frayed nerves. (I wonder why?) I startle at loud noises. When Gavin falls down (which is often) I cannot help but scream and rush to his side even though he hasn’t hurt himself. Tears come, everywhere, unbidden.

I recently got an offer I couldn’t refuse: an all-expenses paid 4-day weekend in Naples, Florida with Bubby and Auntie Loz. I think my family were feeling sorry for me. I was feeling sorry for myself. I really needed to get away from my daily routine and have some quiet time on the beach with my thoughts and a book. That or a gigantic cocktail of the kind in which they specialize in Florida.

He built a small house, called a cocoon, around himself. He stayed inside for more than two weeks. Then he nibbled a hole in the cocoon, pushed his way out and… he was a beautiful butterfly!

– Eric Carle

Gav in Central Hall AGO

We are slowly making our way out of the cocoon. As the weeks turn to months we are beginning to feel a teeny, tiny bit more comfortable with exposing Gavin to the wide world again. It is hard, we must still exercise every caution, but we no longer feel the need to sanitize everything in sight and keep Gavin in a bubble. If I happen to hear a kid with a seal-like barking cough in public, I still run for the hills spritzing hand sanitizer on Bean as I go, but I think we are getting a bit better. It could be that Gavin himself has had a runny nose for the last five weeks straight. Some sort of virus is giving his immune system a bit of a test but he still seems happy and energetic.