Two Weeks

Happy Australia Day! On this very day, TEN long years ago, my lovely London flat-mates invited me out to celebrate Aussie day with them. It was a typical January night in England, that is to say, cold and rainy. Little did I know that at one point in the evening I would end up sharing an umbrella with my future husband. (I’m sure his girlfriend at the time would’ve been surprised by that too.) Fate has a mysterious way of pushing us into the path of the people we’re meant to meet. Many of the people we knew then are still so close to our hearts, if not geographically near.

It has been two weeks and one day since the Bean and I made our triumphant departure from the HSC, but feels like months. We whip through every day and I am exhausted and frequently stressed, but always thankful to be home, and joyful at the progress we see every day in Bean’s recovery.

When we left hospital two weeks ago, Gavin could not walk unaided at all, and for our forays around hospital rode in a wheelchair. If he did walk, he was wobbly and needed a firm helping hand. After two weeks at home, he walks around completely unassisted, with one of us trailing behind him with “Tankie” the O2 delivery device, and possibly an IV pole too. There have been many tangles in various tubies, and a few falls, (none serious) but for the most part he manages very well, and is also now able to climb the stairs slowly on his own. (Of course with one of us following him.) We are supposed to start regular physio appointments at Bloorview, a Toronto kids’ rehab centre, but have yet to hear from them. Just by being a curious toddler, Gavin seems to have designed his own very successful physio program.

The little stubbly eyelashes we noted a few weeks back are now almost at a normal length, and he’s added to that sparse, and extremely dark (!) eyebrows. Many people have told us that after chemo one’s hair grows in much darker, and then may lighten again later on. The hair on his head is the last to make a comeback, but in the past few days we’ve noticed a bit of sprouting going on. His head almost looks like it needs a good wash, but I happily accept a bit of hair where once there was none.

We’ve had to make four clinic visits so far, and have found the process much the same as when we were under the care of the neuro-oncology team. For the moment, we are still BMT customers, but will soon be sent back to neuro-onc., when Gavin’s counts have fully recovered. It is quite sad to contemplate that, as we’ve been through so much with our current caregivers, and will deeply miss all of our nurse friends from 8B. Despite a good rapport with our team at the moment, clinic days continue to be very long. Now that I have accepted how long they are, the process no longer riles me as it once did.

Gavin and I made the trek to clinic yesterday and were accompanied by Da for the day. This is how our day went, and is typical of a clinic day itinerary:

• 7:30 Gav wakes up and goes downstairs for brekkie with Daddy, and eats two bites.
• 8:00 I get up and start gathering the supplies needed for the day
• 9:45 After almost two hours of coaxing and gathering, Gavin is dressed and ready to go.
• 10:00 Shuffle stuff, Gavin and Tankie to car and strap him in.
• 10:15 Chat on way to hospital. Mostly about cranes and garbage trucks.
• 10:30 Arrive at clinic and meet Da.
• 10:50 Finish registering at clinic.
• 11:00 Blood work done, weight done, Gav hooked up to IV.
• 11:30 Go to day hospital to get IV drugs and await blood results.
• 12:00 IV drugs start running, play in playroom and consult with doctors.
• 12:30 Blood work results back, Gav needs platelets.
• 1:30 Platelets arrive and start running.
• 2:30 Spend 45 minutes trying to convince Gavin to have nap.
• 3:00 Gav finally falls asleep.
• 4:00 Da leaves to meet Medigas (oxygen) people for drop off at our house.
• 4:30 Gavin wakes up from nap.
• 4:45 Have to insert new NG tube, Gav bears it with fortitude.
• 5:15 Ready to go home! Rush hour traffic, boo.
• 5:50 Arrive at home and make Gavin dinner.
• 6:10 Gavin eats no dinner.
• 6:30 Daddy arrives home and Da departs.
• 7:00 Medigas has failed to arrive
• 7:30 Begin bedtime proceedings while Daddy goes grocery shopping.
• 9:00 Gav finally asleep
• 9:30 Call Medigas and complain bitterly
• 11:30 Medigas finally drops off O2 canisters and we can all go to sleep.

!