But you take what you can get and say thanks for it.
We got another huge scare Saturday when doctors found the adenovirus in Dominic's blood. When it had shown up in his stool we were warned that if it spread, it could be deadly.
This is on top of his massively enlarged liver due to veno-occlusive disease, plus resulting kidney and even breathing problems. His weight has topped out above 13 kilograms, up from 10 just a few weeks ago.
The problem with the drugs needed to combat adenovirus is that they tax the kidney even more. But it's that old game of you're damned if you do and you're damned if you don't. A lifetime of dialysis is better than no life at all.
So on we go.
There's good news today, as his weight plummeted back to 12.44 kg. There was even talk of leaving the ICU after his dopamine was stopped. But then he started having trouble getting enough oxygen. There's some fluid in his lungs because his system is so bloated.
Here's what he's hooked up to now: Oxygen mask, broviac line (for medications, bloodwork, etc.), feeding tube, catheter (to measure his urine), heart sensor, breathing sensor, bladder sensor, blood pressure cuff. We don't even put pants on him anymore because it's almost impossible to navigate the labyrinth of cords.
Whenever Trish goes back to the oncology unit to grab something from his room there, nurses and staff stop her in the hallway to ask how Dom is doing. They've also started coming to the ICU to visit - sometimes three or four nurses at a time. Everyone says the same thing - "I hope he can come back soon."
Which gets us to the really sad part of the story today.
There was a little girl who Dominic used to see while he was out and about, strolling around the hallways in Unit 1. She was in isolation after a bone marrow transplant, but they'd meet at her door and interact through the glass. Waves, blown kisses, giggles. Her mom had two other kids who would stay with them at the hospital, five in all and we got to know them pretty well.
That little girl has spent much of the past two months in the ICU. And now it turns out her transplant has failed, and she's going downhill.
She won't be coming back to Unit 1.
No doubt she had all the love and hope and support in the world. Now her family gathers at her side and cries. We cry with them, hoping our fate isn't the same.
You fight and you fight and you fight, but sometimes life ends. We're thankful for every day we have.
Keep your chin up, keep fighting and fill your heart with hope. I can only imagine the heartbreak you feel watching another child not have that outcome you deeply desire for her. Especially knowing there is a chance you may have the same fate. And you might not. We are all praying you won't. The doctors and medical team are working hard to so you don't. His fight isn't over. He's tough. You are tough. At this point, no one knows for sure what will happen for Dom. You have gratitude for what you have, every day, and that will continue to help you cope.
ReplyDeleteDo your best to not borrow worry that isn't needed today. One day, one moment at a time. Breathe, breathe and breathe. What is before you this minute is all that you need to focus on.
I look forward to reading the blog when Dom gets moved back to Unit 1.
(((hugs)))
You are in our thoughts.
ReplyDeleteWe continue to pray and send you fighting thoughts.
You can do this Dom! Trish you are a rock and Sean you have strength to the moon and back.
I don't know what else to say except stay strong, as strong as you can.
If good thoughts and prayers are at all helpful, I have to believe that Dom will fight through this latest obstacle, as he has sooo many people rooting for him. Sobering to hear his little friend's sad situation. Must weigh so heavily on you. Thinking of you and sending you strength.
ReplyDeleteI love the way you write. It makes sense to me and it moves me. I found this blog after my son was diagnosed with AML in February this year. I read it all and am so touched by it. You son sounds wonderful and you are such a devoted dad. I am not religious but I send every good thought and wish to you and Dominic and your whole family, all the way from Scotland. My son is doing ok but I am with you on taking one day at a time. All good wishes.
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