Wednesday 26 August 2015


I'd be remiss not to open this post by saying thanks to everyone. Regardless of what's to come your kind words and expressions of love are truly meaningful to us, and, I think, to others who see them.

We chose to be very public about everything from the beginning. Writing would be cathartic, I thought, and maybe be a way to show other parents going through similar situations what it might be like. Friends and family could catch up on what was new and how Dom was doing.

What we never expected was to be in touch with so many people who we'd never met. Cancer parents, sure. But random people who found our blog, friends of friends, even the odd high-profile public figure? Not a chance.

But it turns out Dominic has too big a smile to be contained.

The numbers remain grim. The blasts of cancerous cells in his blood, which were as high as 13 before they miraculously went back down again a few weeks ago, are back. They'd gone down to as low as three, but today they are at 16.4. Doctors call this blasting out, and is a typical end-of-life situation.

How much time that gives Dominic, we don't know. And yes, there's always the hope of another miracle. I'd rather be realistic and hope for a trip.

A wish trip. He doesn't wish for more than thumbs up and smiles from everyone he meets. He has no clue who Mickey Mouse is nor does he care if he gets to skip the lines at It's a Small World. Heck, a trip outside the hospital would be better than what he's dealt with most of the past two years.

But that's been his normal. What those of us weary of the world have a hard time grasping is that our hell — chemotherapy, isolation, fed through a tube, oxygen up your nose — is his day-to-day. He was 11 months old when he was diagnosed. Sept. 12, 2013.

So when the respiratory team told Trish today that Dom is cleared to fly to Orlando for seven days at Give Kids the World resort, all he cared about was that mom didn't have the soother he wanted. The green one with blue trim.

Other doctors have noted that for most kids, this trip would be out of the question. Too dangerous, too complicated. He'll need platelet transfusions every day. He might not actually go to Disneyworld for all we know. Maybe his condition worsens so much that we can't go much further than the hospital and back.

That's not the plan, of course, but like so many things we are ready to roll with the punches life gives us.

We fly Saturday morning, with hearts that are full but also so heavy. We know you'll be with us. You've helped get us this far. Like Dominic, you will be with us forever.


  1. What a post.
    Strong strong strong.
    You are incredibly composed and strong.
    Wishing you three so much love on this very special trip.

  2. So happy to hear u can go on ir trip make tonnes of memories and u will all be in our thoughts...

  3. I'm so grateful to hear that you have the opportunity to go on this trip. We'll all be wishing you the very best every step of the way and sending much strength, love and good wishes to Dominic and you both.

  4. Continued prayers. Praying the trip goes smoothly and you can make some fun memories. So thankful for the updates you've given us.

  5. Tear streaming down my face - that last paragraph really got me. I'm so happy for you guys, enjoy your trip make wonderful memories and yes we will be with forever.

  6. Praying that you will be able to go your trop and fill up your memory box.

  7. Some of the many things I admire about you three is your ability to punch back when you need to, and roll when you have to. There's a grace and a dignity about the honest way you've responded to this impossible reality that has made me appreciate what a great species we can be. You are teaching all of us about love and life, and you have refused to let cancer cast a shadow. Your love for Dom will last forever, and it will find him no matter where he is. Nothing can change that. And being on Dom's journey with you (albeit only through my laptop) has changed me forever. I am humbled and grateful for that, even in my dread of what might come. Wishing you a happy trip together. Sending love your way all the time.