The words made me go lay back down in bed. I still feel faint writing them.
As much as we wanted answers, we wanted positive answers. This feels like the beginning of the end, not a glimmer of hope getting brighter.
Dominic's fever went away enough to be discharged, but when he was back at the Alberta Children's Hospital Thursday for a barrage of tests his breathing rate tripled before an MRI. An X-ray later and he was diagnosed with bronchitis and unable to get the other tests done.
They still need to do the tests, but news from earlier in the week has changed everything else.
Blasts of cancer cells in his blood are back. Once down to five per cent from 30 - due to the azacitidine (chemotherapy) - they're back up to 20 per cent.
That means the azacitidine has failed. Even though he last got it Sept. 13 prior to the T-cell infusion, and even though his next round of it was delayed due to the brain bleeds, doctors tell us it should've kept the leukemia at bay longer than it has.
Time is running out. We were given the option to go to life-prolonging chemotherapy instead of our initial plan of being aggressive.
Naturally, we're still fighting as long as he tolerates it.
The next - and perhaps final - plan is a different type of chemotherapy and one last shot at the T-cell infusion to cause graft versus host disease. Originally he could've had five or six chances with the T cells but the cancer is so aggressive they think we're down to one. So he's going to get a heavy dose of T cells and will have a high likelihood of getting very sick with GVHD.
The chemo will happen next week, as soon as the tests are done. He's getting steroids and other drugs this weekend in hopes of calming the bronchitis and viral infection prior to Tuesday's round of sedation and tests. Even if that doesn't work they'll sedate him and take our chances.
I saw him on Facetime this morning. He's got nasal prongs in to deliver oxygen because of his breathing issues. But he still took his soother out and kissed Trish's phone. He waved. He was busy eating Smarties - nearly a full box.
Our friends are getting married tomorrow. They want to have kids. What I wouldn't give to have them play together some day.
Hello mum and dad of Dominic, i just finishend Reading your blog. Tears in my eyes....Our Son ( he is 13) was diagnosed with AML last januari, he also had a bonemarrowtransplant so i recognize
ReplyDeleteA lot in your story. Our Son is doing fine at this moment but we are also very afraad it might return...I hope with all of my heart that the last treatment Will work for Dominic and that he Will become a healthy children again. My thoughts and prayers are with you. Greetings Petra from the Netherlands
ReplyDeleteI couldn't even get past the first sentence and I felt a hammer go through my heart for you guys. We are always with you in this fight for whatever you need us for. I know words from others do little to help you as you need to battle within your own heart/head for what emotions come out.. but please let us know if there is anything we can do to help out, even the smallest of things. Our arms are always open for you - doesn't matter what time it is. Please stay strong as you can as parents and turn to eachother for support as well, as you are a power couple together now and forever. We love you all
ReplyDeleteI couldn't even get past the first sentence and I felt a hammer go through my heart for you guys. We are always with you in this fight for whatever you need us for. I know words from others do little to help you as you need to battle within your own heart/head for what emotions come out.. but please let us know if there is anything we can do to help out, even the smallest of things. Our arms are always open for you - doesn't matter what time it is. Please stay strong as you can as parents and turn to eachother for support as well, as you are a power couple together now and forever. We love you all
ReplyDelete(((hugs))) I wish I could wave a magic wand and make all the bad things go away. I can't. Walking on the balance beam between what they say is likely to happen and hope they are wrong can feel like the tiniest sliver and teetering on one side only seems to draw us back to the other. This is a dance I wish on no one. My heart aches for all of you and I will help support the positive thoughts and energy for the new chemo and T-cell infusion to be the cure. Your continued courage and strength is an inspiration to many, and Dom is so very lucky to have you and your love. (((hugs))).
ReplyDeleteI know hearing from everyone that they are thinking of you doesn't always help. I just wish I could help or do anything for any of you to make it easier in any way and less hard. Please know you are all in my thoughts every day. Hugs you guys. HUGE HUGS!
ReplyDeleteMy heart hurts for you. Words are useless - everything sounds like a truism. Just know that complete strangers are pulling for all of you, and are hoping the new chemo and GVHD gives Dom the break he needs now more than ever.
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