Tuesday, 5 August 2014

The nightmare returns

Through these past six months of bone marrow transplant, multiple trips to the ICU and all of the other complications from Dominic's initial leukemia diagnosis, the one thing we held on to was that every test for cancer since he started chemotherapy way back in September came back negative.

Until today.

Despite an aggressive set of chemotherapy and the transplant, somehow, a test came back showing blasts of cells in Dom's blood.

Leukemia. Fucking leukemia.

That explains why he wasn't doing so well last week. It wasn't another random illness or a reaction to a drug or a random dip between PTLD treatments. It was cancer again.

They won't have an official diagnosis until tomorrow but told us today that they're pretty sure.

In between phone calls and texts to let family and friends know the brutal news, I'm sitting here dumfounded in my kitchen, his empty high chair to my left, the only sound the dull hum of the air conditioner. This is the way it's been for most of the past 11 months, but the short stretches when he and Trish were home gave us hope.

Will he ever sit in that high chair again? Why can't this torture end? I'll take something other than a normal future for my son but dammit, I want him to have one.

I don't know what hope is right now. I only know that we have to focus on tomorrow, keep doing what we can and let the professionals help Dominic fight this thing again.

They'll come up with a plan, but the options may be limited. Last year our primary doctor said that if the cancer returned, you often can't use the same chemotherapy treatment because it's too harsh and besides, it wound up not working, so why bother? But the treatment he had was already super aggressive because the subtype of acute myeloid leukemia he had, the one with the 7:12 chromosome translocation, was extra dangerous on its own.

I suppose it's possible this is a new, different cancer, which presumably would be good news. Today may not be a good time to speculate, however. We have to wait and see, then go from there.

I don't pray. If there is a higher power, I believe it certainly isn't concerned with the minutae of my life or that of my family's.

But there is a tangible community of real people, and folks, I need to lean on you right now. Thanks for thinking of us.

16 comments:

  1. Son of a biscuit, Sean. No words are helpful right now. But your story is well known in MH. So lots of us are thinking of you, and those of us who do believe in God will be praying. Even though I believe, I sometimes take out my anger and frustration on my God when I feel He could give a rat's patoot about what's going on. It feels pretty good to blast Him.

    FWIW.

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  2. Dominic has a great dad and mom. He needs that more than anything.

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  3. My heart breaks for you! Hugs to everyone! My thoughts and prayers are for you tonight!

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  4. My thoughts and positive energy is all coming at you guys through this. This is absolutely heartbreaking to hear. I hope this all turns out well for Dom, and your family. I don't pray either, but I'll keep you guys in my thoughts. Lots of love and hugs!

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  5. Heartsick for you and Trish and of course Dom. He is a true fighter and with his amazing support team behind him, I hope he can battle through this latest obstacle. Praying for you all and sending all the good vibes and wishes we can. I am so sorry to read this update.

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  6. Dear Rooney Family,

    From all of Erins stories i know you guys have been nothing but strong since this journey started. Your guys are in my thoughts and prayers daily. You definitely have a "tangible community of real people" surrounding you, dont' be afraid to lean on us and ask us for anything you need.
    Sending lots of love from all of the Summit Environmental team

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  7. Clearly you have one heck of a strong little guy there, and you also have many people pulling for you, and sending a truckload of positive thoughts your way. Also sending Dom a huge burst of energy so he can kick the crap out of this horrible disease, and get back to all the fun things a kid his age should be doing. You are in our thoughts.

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  8. Dom has the smile of a Superhero… it melts my heart.
    Focus on that smile.
    My family is thinking of you guys. We do pray and will continue to but we are holding you all in our thoughts today and always.

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  9. Hi, you don't know me but you are friends with my daughter Amanda Crawford. I have been following Dominic's Journey since the beginning of your blog. I cannot imagine what you are going through but you have certainly given us some insight as to what a family goes through I and you have surely given us an education on a lot of techie terms for this tragic disease. Our best thoughts and prayers are with you all and also the biggest heaping of hope you can imagine! Lots of good vibes to you xoxo

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  10. Thoughts & prayers for all of you; healing and strength... we're passing this on to our prayer warrior friends who have fought the cancer battle with kids too. Our son Josh has passed your story on to us..... Sue & Bob Aldrich (Kitscoty)

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  11. Joleine Hartman5 August 2014 at 23:17

    So sorry to hear Sean. Our thoughts, prayers and healing vibes are being sent your way.

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  12. Yes Sean there is a GOD and right now you need to lean on him. You and your family are in our prayers every day. The knowledge that the doctors have are God given but sometimes that isn't enough so sometimes we need to believe and pray that God will preform a miracle and that is what we pray for Dominic.Your neighbors

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  13. My heart is aching for all of you. As a mom of a cancer survivor it is your worst fear to be told that the cancer has returned. You pray for time to pass by quickly because you are told that the more time laps the better chance they have. As always I will be thinking of you all, it is hard to believe that prayer will do any good and I know I thought the same when we were going through it. I will still pray and send all the positive energy your way. Stay strong :)

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  14. I am so sad for you today. I have been following your blog all along, and have been so amazed by Dom's indomitable (!) will to keep going despite all the setbacks, and your and Trish's courage to support him through it. This seems so unfair and cruel. I believe, so I will ask for a miracle for all of you - you deserve and need it. In meantime, consider that you and Trish and Dom have been and are miracles. Your love and determination are miraculous.

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  15. News no one wants to hear. I am so sorry. But, Dom is such a fighter that this, too, will just be another chapter in his journey. Hugs to you all ♥

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  16. All I can do is sit here and cry. I wish I believed in a higher power but I don't. I do believe your journey has been too extraordinary to end like this. Perhaps they screwed up another test, perhaps this is Epstein Barr induced and not his original leukemia. I'm not sure how you get through your days but you are an amazingly strong family and I look forward to a better post soon. Best wishes from New Jersey.

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