Friday, 8 August 2014

Sorry

He tried not to sugar-coat it, but he couldn't help but sugar-coat it.

We saw right through it nonetheless.

Dominic's acute myeloid leukemia is back. And all of the limited research that's been done on his rare subtype - the 7:12 chromosome translocation - shows zero survivors when it returns.

The doctor didn't quite say so, but it's a death sentence. Our son, our miracle after trying for years to have a child, is going to be ripped away from us.

Didn't we do enough? Then again, could we have done any more than four rounds of aggressive chemotherapy and a bone marrow transplant? Every single test, from the simple ones to the super-sensitive ones as recently as June showed no sign of the cancer relapsing.

But that's what cancer does. It grows. All it takes is one cell turning to two, then four... eventually, it's detectable again.

We've failed. We've tried our best and it wasn't enough. And now we begin the process of deciding on quality of life versus quantity.

There is still a glimmer of hope. Given the choice of another six months of chemotherapy in the off chance it'll somehow work where last time it failed, Trish and I instantly decided to go ahead with it. He could also do another bone marrow transplant from a different donor in hopes something about another donor's blood is able to hold off the AML for good. There's also a type of T-cell transplant - the T-cells are the body's primary infection fighters - but studies show they're not too successful.

Before you go scouring the Internet, please know our doctor has already done that. The miracle gene therapy for leukemia that's being done in the U.S. is only being done with ALL patients, not AML. It's not an option. There are some experimental trials but they're all to test new drugs at the ground level - there's no evidence they might actually work.

So here we go again. Timeline-wise, it could be a mirror image of last year. Six months of chemotherapy, hopefully a few days out of hospital here and there, then a bone marrow transplant and another few months depending on complications. There's just a lot less hope to be had this time that it'll work.

At one point during our conversation with the doctor Dominic decided he'd had enough of sitting on the couch watching mom and dad try not to cry. A nurse came and took him for his umpteenth trip in the hallways.

My sister and her boyfriend came to visit. More crying. Then Trish left to go for dinner with a friend who we met because her daughter has leukemia too. I told Trish not to wear makeup.

That left Dom and I here in the hospital. And as I tried to read him a bedtime story, I just started bawling.

"I'm sorry buddy," I sniffled. I couldn't say anything else. I couldn't read the story, could barely stand.

He reached out his arms and hugged me.

My son isn't even two years old and he's the strongest person I know.

Maybe he will beat the odds. We will give him every chance, but if not, we have to try and enjoy every day he has left.

11 comments:

  1. I'm SO sorry to hear this news. I am so sad for you and Dominic and Trish. I HATE CANCER. It hurts so many people, and seems unstoppable sometimes. But I hope and believe the second round of chemo will kill it forever. Please know I am pulling for you and praying for you daily.

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  2. Sean, I am so sorry. Let the glimmer of hope shine every day. You must believe that there is no failure in this situation. You, Trish, Dom, the doctors and nurses have done everything possible. Never doubt that. And we know you will do everything possible in the next weeks and months. That determination is what has got Dom through some very tough times already. It will help him - and you and Trish - get through the tough times coming up. Keep going, one step at a time. Believe that wherever this journey takes you, you are loved and supported by your family, friends, medical staff, community and many others whom you might not know.

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

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  3. You are in our thoughts and prayers! God Bless!!!

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  4. We all love you and are gunning for this second bout of chemo and the transplant to be the one that works! Stay strong.

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  5. Dominic and your family are never far from my thoughts. Lose yourself in his hugs and smiles and laughs right now. Tomorrow, continue to fight this cancer with your son.

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  6. Sean, I'm so sorry to hear this :( I've been following Dom's Story right from the start ... You're all in my thoughts, and prayers ... God Bless you all :'(

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  7. Devastating. Unfair. Unimaginable. Heart wrenching. I can't believe it. Everything he went through, that you all went through, would have been completely worth it. I am a veterinarian who has given the quality vs quantity speech 1000 times. Thinking about it in context of a boy who hasn't seen his second birthday makes me sick to my stomach. Be mindful of the road you travel. Deciding to accept or decline treatments; watching how he handles the treatments....I can't imagine. If his life is to be short make it as enjoyable as possible but remember that there is a first time for everything. He is already a miracle. Love is not bound by things like time. No matter how much time we have with our children it will never be enough. I desperately hope that the coming months will bring you joy; and hopefully another miracle.

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  8. My heart is aching for you guys right now. I have followed your journey from day one laughed when you guys laughed, and cried when you cried, and have done a virtual fist pump for your triumphs. We as parents often question our abilities as parents and wonder are we doing enough. Your little Dominics infectious smile and personality and strength stems from you as parents and is a reflection of yourselves. Your ability to blog this journey, express your feelings is remarkable and has touched family, friends and like myself a stranger. Through your journey I have done a lot of self reflecting; you have taught me how to see the positive in the small things, remain strong, and help others. I have been paying it forward more because of you, and for that I thank you. In this journey there are so many people behind you and there for you. Remain strong, be positive, and keep fighting. Thinking of you guys take care.

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  9. Sean, I desperately hope that glimmer turns into a blinding light. I can't imagine what you and Trish are going through with this. My heart hurts for all 3 of you. Dominic is a trooper, and I hope that you find something to kick his cancer's butt! You have lots and lots of love and support behind you.

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  10. It seems particularly cruel and inexplicable that after all you've been through both to conceive and in the last year that this is happening. Your little boy remains in my thoughts and prayers. I so hope you get the miracle you deserve!

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  11. As others have said before, I have been following Dom's and your families journey since it began. I have prayed, laughed and cried right along side you and Trish. While watching Dom eat his KD I thought to myself, "wow, he has come such a long way these past 11 months." His hand/eye co-ordination for feeding himself was flawless. So to hear this news just a few short weeks later, is utterly devastating and unbelievable and I am not even a part of your families life. I can't begin to imagine what you are all going through, so I won't. I can only offer you my support, love and prayers. I will continue to pray fervently for a miracle for Dominic. I will also pray for you and Trish. May you find some peace and comfort in knowing you are all loved and lifted up in prayer by those who know you and those who don't.

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