Wednesday, 24 December 2014

A melancholy Christmas

Dominic is coming home for Christmas.

It will be his last.

I've cried more in the past week than in the 15 months since his diagnosis with leukemia. A test came back showing blasts of cancerous cells in his blood; the doctors had already told us there's nothing else they can do to cure him.

We've tried everything we could. Multiple rounds of chemotherapy, a bone marrow transplant, inciting graft versus host disease... and this extremely rare sub-type of AML (with its distinctive 7:12 chromosome translocation) kept fighting back. There are studies of new drugs in the U.S. but only for ALL patients. As our main doctor said this week, do you want to spend the final months of his life in some foreign hospital getting poked and prodded, or try to enjoy the time you have together?

We had hope for so long, but I have also thought plenty of what has seemed like an inevitability. To get this news just before Christmas is repulsive, but there's never a good time to hear your child's going to die.

At least we can plan for it.

The plan could include a wish trip of some sort, even though the actual Children's Wish Foundation refuses to do anything for kids under the age of three. As though such a trip is only about the child. It's about making memories for all of us, good ones, ones that we can reach for when the only other alternatives are the ones from a hospital. We wanted to go to Disneyland, but complications mean Vancouver will have to suffice. Can't leave the country.

How much time does he have? Nobody wants to guess. It all depends on how quick the leukemia grows. We may still do radiation, but now it won't be a curative measure, but rather a life-prolonging one. Trish met with a palliative care team today and talked about things like resuscitation measures. Merry fucking Christmas.

But then, she got to leave the Alberta Children's Hospital with him. Put him in his car seat. As I write this she's on the Trans-Canada Highway. In a few hours they'll be home in Medicine Hat.

By chance, a friend in Calgary signed us up for a food hamper last week from her church. So we have a turkey, potatoes, stuffing, everything needed for a feast. I brought presents home and put the tree and decorations up. I think he'll have a wonderful Christmas.

He doesn't know it, but he'll never have another. So for us, intermingled with that joy, there will also be many more tears.

His journey is coming to an end.

8 comments:

  1. My heart is breaking for you. And of course I have nothing useful to say. It all seems so meaningless in the face of this cruel travesty of what you all should be enjoying, especially today. All the claptrap about making every moment count - that's not advice you need because obviously you've always done that with Dom. And I can't even say Merry Christmas, since clearly it won't be. I'll just say it's a blessing in my life to witness how you and Trish and Dom live yours. And I'd give anything to fix this, even though we've never met. Oh, and I think it's ridiculous that only children older than three can have wishes. What a crock. So, if there's a chance to donate to a Wish for Dom, (or to start a campaign) I'd be right there, first in line, waving money. Virtual hugs to you and real tears with yours.

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  2. ...unnatural, unfair and tragic...so sorry to hear this news, Sean.

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  3. Sean and Trish, I am so, so sorry. I cry with you. This is news no one should ever have to hear. F'n cancer doesn't care. I hate cancer. With the many and mixed feelings you have, remember you are making memories to last his lifetime, and yours, too. The sadness will be there. That is not in doubt. You can create moments where Dom will light up your life with his smile and giggles. Your courage shines through - how wonderful to take the time to decorate your home and be ready to spend Christmas in your home, with your son and wife. Moments are precious.

    None of the above is done with ease or without tears and the occasional melt downs. Honour those times.

    This is not a simple journey and you are surrounded and supported by the love of your family and friends. The love you share with Trish and Dom has helped you and will continue to do so.

    Life is unfair. I wish for you the strength to find peace, hope, and joy in every day - even if it's a few seconds at a time.

    Take care,
    hugs, hugs and more hugs. <3

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  4. My heart is really sad for all of you. For Dom, for Mom & Dad and all that love you.
    I wish you the happiest of Christmas this year. You are on my mind and I wish I could do something for all of you.
    Bless you.
    This really sucks and I'm just so sorry.
    Hugs Sean, Trish, & Dom.

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  5. My heart is broken for you. Absolutely broken. There are no words that can make this any easier for you, though I wish there were. I hope you are able to make some precious memories this Christmas. You are all in my heart. Sending lots of Love and Light. <3

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  6. There are no words that I can write that can help take away your family's pain. I have followed Dominic's story through all the highs and all the lows. When I came to the blog today, on Christmas day, I didn't expect to read those dreaded words that the leukemia is back. I am so sorry, Sean and Trish, that you had to receive that heartbreaking news. No child should pass before the parents.... ever.

    Cherish the time you have with Dominic. Love him as I know you will. Dom will always be a part of you even after he has departed this life.

    We're sending lots of hugs and prayers your way.

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  7. I know your hearts are breaking, but I do know that all of us following (strangers) since you started the blog, our hearts are breaking as well, and all of Dominic's care givers, nurses, doctors, etc, their hearts are breaking too. (I recall back to my parent who still, will bring up a special person that he just couldn't help, their heart still breaking at the memory 20+ years later). I know it doesn't matter to all of you that others hearts are breaking, this is your boy, your hearts. But do take some comfort from all of us here, we care, we hate this, we didn't want to read your latest words, but we are here, and by you sharing these private moments with us, it helps all of us. I am so very sorry. So you get xx time left, yah, that totally sucks, totally, makes me scream. I am not angry with the Wish Foundation, they have their rules, a photo op with a mouse far away isn't going to be the ONE thing that you will look back on and say at least we had that, as he begins this next leg of the journey, instead I think simple things, will be wonderful memories, a bath, couch time, with family, with you, tons of cuddles, together time, anywhere !
    Having said that, I’m throwing out an idea here and I would love to help but I don’t know quite how to get it moving, but if someone can point me in the right direction I would love to start a #DisneyforDominic, where maybe people can send/ship/mail a stuffed Disney character, we get hundreds, large, small, all characters, caped Disney characters, etc, he gets a room full, maybe we can get folks to dress up accordingly for an afternoon of fun- he won’t know if he is at Disney for real, his reaction would be the same. #DisneyforDominic could become a way to have a special moment for those under 3 here in southern Alberta. It could become a way to help others who have to take the horrific journey you are taking and have a day of happiness, some photo ops, etc, starting with Dominic.
    How can we make that happen ?? How can I help ?? Or is this just a dumb idea, I’m grasping at straws and typing through tears…
    Hugs all around,
    A stranger…

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  8. I'm so, so sorry to hear this news. My heart breaks for all of you. I wish there was something I could say or do, but know you are being thought of with love.

    - Tamara's friend Robin

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