Thursday, 2 April 2015

A hundred times worse

Remember when Dominic's cancer went from 0.7 to 0.07 per cent? When doctors were using the word miracle? And we used the word hope?

Forget about it.

This week's tests show the cancer is back, and it's worse than ever. It's in his blood, where it hasn't been in months. In his bone marrow it went from 0.07 in February to seven per cent now. That's 100 times more cancerous cells.

The miracle is over. The hope is gone. Again. We're back to where we were at Christmas, and have to keep telling ourselves we're so lucky to be at Easter at all.

He wasn't a happy camper these past couple days. I chalked it up to a lack of sleep - he doesn't rest well on long car trips - but the call today from our primary doctor and nurse also informed us the tumours in his brain are enlarged too.

Whereas three months ago they measured at about 25 per cent of his brain, now they've increased to 35 per cent. One theory for him being more grumpy is simply headaches as the pressure builds up there.

Tylenol and more oxygen are two early steps we can take to make things easier for him. But we were also given morphine. That's right, when your kid is in palliative care they can just prescribe the stuff like it's candy. We hope not to need it soon.

In December we were also given what's called a green sleeve. It contains our official plan for his end of life, including a do not resucitate order in case something bad happens.

We'd put the sleeve in his diaper bag in January. Last month we took it out and filed it away, hoping we'd never need it since he was somehow defying the odds.

It's going back in the bag tomorrow. And we get to start planning his funeral next week.

18 comments:

  1. Im very sorry to hear this news for our little fighter. You've all been dealt a very (#*$( hand, especially your beautiful boy. I know you've gone back to Medicine Hat, but know we are here for you, whatever and whenever you need us. I know it's hard to know exactly what you need, but reach out and connect with your support system. Even if it's a 3:00 am conversation just listening to you grieve, we are here for you. My heart breaks for you.. we love you.

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  2. My heart breaks for you all......hold the memories close to you heart and never let go.What a brave little fighter.

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  3. I am so terribly sorry. I cannot imagine what you are going through and what you have gone and have to go through. Nobody ever wants to plan their child's funeral before their own. You are incredible people and my heart breaks so much for you.

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  4. What devastating news. I am so terribly sad for you. I hope with all my heart that the medications and the medical support keep Dominic comfortable.

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  5. I feel just gutted. There are no words. Please know you are in the hearts of many. Nothing anyone can say can take the hurt away, but you all are being held close in our thoughts and hearts. Sending lots of love and warm light. <3

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  6. I pop on usually every day for a Dom update if there is one, since the beginning.
    I liked the word miracle, even if it didn't make sense, it seemed like it may actually be true, the past 3 months did seem to defy odds.Tons of great little Dominic stories, cute pictures, hair coming back (looking quite handsome by the way), I thought WHY NOT HIM, go away f----- cancer !
    Then I pop on today, and screamed NO !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Absolutely heartbreaking. I'm so, so sad to read this. Sending love to Dominic for a peaceful journey.

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  7. So sad to hear this news. Dominic has such a big personality. Just wanted to let you know that Brad, Linda and Tish are thinking of you.

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  8. I'm so sorry Sean & Trish that you received this devastating news. I, like so many others, come to this blog often and was buoyed by the previous post. I just cannot imagine the grief that you are going through now. No child should ever pass before their parents. Enjoy every moment that you can now and know that there are many still hoping & praying for Dominic and your family. Sending tons of positive thoughts and hugs your way.
    Betsy

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  9. Poor sweet, Dom. Poor brave and heroic parents. This is so heartbreaking and tragic; more so because of the great hope everyone felt when his counts were decreasing. Cancer respects nothing - not love, not time, not hope, not fairness. However, Dom and you and Trish have burned brightly in the darkness of that hideous disease, and Dom will shine forever in the hearts of all of us who love him. Wishing you all the love and support and tenderness you can get through this impossibly hard part of the journey.

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    1. Beautifully said. No words seem adequate to express our sincere sadness with this recent update. Our thoughts are with all of you.

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  10. There are no words. Cancer is such a cruel disease. Neither you guys or Dom should have to be foing through this. He's such a special little guy, I hope that you all can feel the support and love that surrounds you. Keeping you all in my thoughts and prayers.

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  11. I am so speechless and heart broken. I was hoping to hear more good news. I am so sorry Sean and Trish. My son and I will continue to pray for Dom as we have been every single night. Stay strong.

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  12. Oh my goodness, I can't believe I'm reading this. So heartbreaking. I will be praying for all of you :(

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  13. Prayers and wishes for your family that there may be a miracle again. Have been following Dominic's journey since the beginning, and there are a lot of people that stand behind your family. May you find some peace in these hard days that lay ahead. Thoughts and prayers

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  14. All of these posts speak for the thoughts of anyone who has been following your story. Heartache. Your graciousness defies your situation. May your coming days be peaceful and comfortable. Many thoughts are with you. Linda

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  15. I'm so very sorry. I've been following your journey for over a year now, while my son has been treated for AML. I am sick and sorry that things have got so much worse for you all. Hope dashed is crueller than no hope at all, it seems. I just can't belive things have taken this turn. I have no wise words but I wanted to send solidarity from one cancer parent to another. You write with such clarity and honesty, your blog shines with dignity & with love for Dominic. You're a great dad and you deserve better luck than this. I'm really so sorry. Courage for the days to come.

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  16. Sean and Trish, I can't imagine the heartache you must be feeling. My deepest sympathies to you and the rest of your family. Cameron

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  17. Sean & Trish... been praying to hear better news... I am so sorry. So thankful you have had the extra time with him... will continue praying!

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