Sunday 5 October 2014

One foot in front of the other

Hours before giving my first public speech I hadn't practised a word of it.

The preceding two weeks hadn't gone so well. I was depressed, exhausted and now Dominic was in hospital after doctors realized he'd been suffering from multiple tiny strokes.

I had some notes. Thank everybody at the beginning, because you'll forget to thank them at the end. Tell your story. Remember to focus on how happy and wonderful your son is, but also that this speech is for Helping Families Handle Cancer, a wonderful charity that's come to your aid financially.

The occasion was Helping Families' fifth annual art auction. We didn't know what to expect, other than 170 amazing people and some cool art for sale.

All I knew is that compared to what we are going through, the speech would be easy.

The event was set to start at 7 p.m. At 5 p.m., our doctor came back in the hospital room and gave us the latest update.

Originally the strokes were thought to be from weakened blood vessels and low platelet counts. But an MRI revealed the vessels weren't the issue.

When they said it wasn't cancer, that merely meant it wasn't a tumour. Unbeknownst to us, that didn't rule out blood cancer.

They think the leukemia has spread to his brain.

There are other possibilities, but they're rapidly being ruled out.

He did give some good news, that the chemotherapy we've been using has taken the amount of cancerous cells in his blood from 30 per cent two months ago down to five per cent this week. But that's what it was supposed to do. Getting GVHD from the T-cell infusion was supposed to do the rest. He doesn't have GVHD yet. And now he may require heavy doses of radiation if it's decided it is leukemia in his head.

I stood up in front of friends, family and strangers and told them all the bad news. Sharing our story is what we do, so this is no different.

The night was tough, but it was great to see $27,900 raised, $5,500 of which came from one auction on a piece of artwork created live that night. Had we not been the beneficiary of the charity I'd have been tempted to bid on the Star Wars poster signed by all of the film's major actors - unbelievable they got a hold of such a rare item.

It was inspiring to hear that hundreds of thousands of dollars have been rasied in the six years the charity has existed, and how it continues to expand its goal of relieving financial stress on families like ours. Trish hasn't been back to work because of this, and all of the early forms of financial relief — mortage deferral, employment insurance for parents of critically ill children — have long since run out. We still have a good amount of money raised that helps pay the bills, but Helping Families is pitching in with hundreds of dollars in gas and grocery cards, thus keeping our Visa bills to a minimum and preventing us from dipping in to the fundraising account as much.

Through it all he's still the same happy kid. He hasn't been waving as readily and his right hand really isn't what it used to be, but he loves splashing in a bath and even climbed the stairs the other night. Slowly, mind you, but almost to prove us he still could.

He hasn't been discharged from hospital but he's sleeping peacefully here at my parents' house in south Calgary tonight. They've given us night passes so we can feel a bit more normal.

It may also be because he's got a much longer stay there coming up.

- Photo of Sean courtesy Helping Families Handle Cancer (http://helpingfamilieshandlecancer.com/)

1 comment:

  1. THANK YOU for posting this, as hard as it is to read about another setback. Thank you for being honest about what this costs, emotionally, mentally, and financially. Your words count more now, and you are using them beautifully to convey your gratitude. Just as you have used them to convey your anguish and fear. It is powerful. All my hopes are with you three.

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