Friday, 31 July 2015

The roller coaster speeds up

Up and down is a familiar refrain for us, but never like today.

Bad news. Good news. Hope. Then crushed. All in the span of two hours.

Even before Dominic's MRI yesterday there were signs. His white blood cell count rose dramatically - and so did the count of leukemic blast cells. Even though he continues to get an oral chemotherapy (in addition to the new one this week), it was never designed to last. Only to prolong.

The doctor came out from getting a sample of Dom's bone marrow with a heavy look on his face. He had to poke around three times before getting barely enough. The theory? The bone marrow is so full of cancerous cells there's not much else to find.

This is what the beginning of the end looks like. Again.

But we've always been proven wrong, you say. And there, again, was hope. The MRI, completely at odds with anything they expected, shows a dramatic lessening of tumours and swelling. Miraculous, even.

At 2:30 p.m. our doctor came to talk. He said because of the reduction in brain tumours, we might be able to consider changing Dom from a palliative patient to one we might try to cure again.

And in the same meeting he said the initial results from his bone marrow showed 90 per cent cancerous cells. It was about seven per cent in March, the last time Dom had a biopsy.

A second bone marrow transplant was mentioned. There was no great chance it would work in the end, but then doctors thought there was no chance he'd still be here eight months after they said they'd run out of options.

We walked back to Rotary Flames House. On the way we ran in to the Reverend. We talked about what it meant to decide whether to go ahead with this, especially the aspect of more radiation and how that might affect his quality of life. Was it worth it?

At Flames House we met with Sarah from the Children's Wish Foundation. The same foundation that wouldn't consider him in December because he wasn't three years old is now making an exception to its rules and giving him a trip. To Florida. Disneyworld. And a place called Give Kids the World that was built just for wish kids.

She left and our doctor came back.

His tone was sombre.

There's cancer in his spinal fluid. Apparently he'd hoped the 90 per cent bone marrow number was a mistake, that it had been contaminated with other blood as he'd poked around getting it. But the spinal fluid was at 86 per cent. No faking that.

Just as soon as the second bone marrow transplant was mentioned, it was back off the table. And now that fast track to Florida might need to happen this month. Because there might not be a next month.

It's quiet here at night at Flames House. Unsettlingly so. He's in one room, then a massive door. I'm in the next room, in a recliner, fridge and microwave ahead of me, couch across the way. Then another door. Trish is in the bedroom, trying to get to sleep.

It's supposed to be relaxing and nice. After a day like today, it feels like a tomb.


  1. I wish things could be different. Keeping you all in my prayers. I am glad they are finally giving him a trip. I hope you will have fun.

  2. I wish I had great words of comfort. All I can do is say I'm praying for Dom and all of you. Praying that the trip happens really soon. Sending hugs from the Raders in Ontario. xoxoxoxo

  3. Hugs to you and your family during this time - Enjoy Dom's trip to Disney - you all deserve it.

  4. I so wish I didn't have to read the words that you likely hated to write. We have all prayed and wished so hard that somehow everything would change and there would be a continuation of the wow Dominic moments. Thank you again for sharing your story, your triumphs and your agony, your choices and your decisions. I hope the trip can proceed. Trip or no trip, continue to smother sweet Dominic with your love and smiles, you guys are awesome, the best, truly.

  5. Sending love, thoughts, and hugs from Ontario. We hope that your trip gets scheduled soon, and that you have a fun time at Disney. xoxo

  6. Sending you so much love. Cherish every moment.
    I hope your trip to Florida happens.
    Thinking of you guys.

  7. (((hugs))) You guys are amazing. What an extreme of emotional news for you to take in. May you have more fun than you can imagine when you go to Disneyworld filled with beautiful memories.

    The tightrope between reality and hope is a tough one to walk. As you have done every day for the last 2 years, choose joy and love. Every minute is one to be cherished.

    Thinking of you lots.

    May you find peace, hope, and joy in every day.

  8. Continuing to pray for Dominic and all of you!

  9. Enjoy Disney! A trip to make memories for a lifetime. I wish this wasn't your reality. It seems so cruel. Thinking of you all and wishing you strength.

  10. This is heartbreaking just to read, so I cannot imagine what you and Trish are feeling. How can the human heart endure such hope and devastation in almost the same moment? But, looking back, Dom wouldn't even have had the chance to go to Florida if you hadn't continually refused to give up. You choose the roller coaster if it gives your sweet boy more time! More life. You are simply magnificent, and no place with you in it is a tomb. The power of your love is the essence of what's good about our species.

  11. Miracles, can, and have happened, as Dom has proved in the past. The grace with which your family has handled every circumstance up to this will continue, and always know what a good job you did of showing that little Dom is loved with every ounce you have. If there's any family that is equipped for anything that life throws at them - it's you guys. Hoping, wishing, praying for your continued amazing strength!