Friday, 20 September 2013

What's in a week

After days of trying to catch up I've finally realized that I'm not going to do it by blogging about one or two days at a time. So much has happened but if I don't summarize the entire week I'll forever be in the past tense.
And who wants to live in the past? Certainly not us, not now.
I guess the most accurate thing to say would be that Dom's chemotherapy hasn't been simple. Taking the drugs themselves is simple enough now that he has that main (broviac) line - a nurse comes in, casually announces that we're starting some chemotherapy, and connects the line to the drugs.
It's everything else that's complicated.
On Monday Dominic got what's called a lumbar puncture, which is a fancy way of saying they stuck a needle in his back. You need to be put to sleep to do it, however, and he didn't wake up breathing properly from that. They had to insert a breathing tube down his throat. They also had a hard time finding spinal fluid (clear) without also hitting blood, so there's something wrong there too. Your brain fluid and blood are separated in the body, so there's either a cluster of blood cells or vessels where they shouldn't be that the needle is hitting. On Thursday it happened again during the lumbar puncture and he got an MRI so they can figure out what to do about it.
Also on Monday he had a slight seizure. His left arm went numb as Trish was holding it. It hasn't reocurred but he had a separate MRI for that which revealed a cluster of blood cells on his head.
Before you get freaked out like I did, understand that this is not in his brain. We can't see it but it's between the brain and the skull. It's presumed to be leukemic and should go away with the rest of the cancer during chemotherapy.
I believe it will go away because the bug bite-looking things on his body are already starting to disappear. The main one was near his left temple and you could feel it like a hard, red bump. It's now soft and going away. So the drugs do work.
Wednesday was fantastic. We played bingo (OK, I played bingo after Dom went to sleep), he was alert and started to move around, and there wasn't any more bad news that day. We also talked to a social worker who gave us a couple books including A Beaded Journey, which is more of a workbook where you keep track of all of the things that have happened. For each event - be it a prick or a blood transfusion - you earn a bead. At this rate the kid's going to host Mardi Gras parties at his bedside.
Thursday started poorly with the second lumbar puncture and resulting problems. It ended on a high, with Dom getting out of his crib to play a bit on the floor and even walk (with Trish's help) around the room.
I'm planning to go back to work this Sunday. We've decided that the road is going to be bumpy and I can't stay away forever. They've been so good to us, so understanding, but we don't want to take it for granted. I've arranged to only work four days a week so I can be by Dom's side the other three days.
Amazing how much life has changed in a week.

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