Today at around 4:00 pm Gavin received his very last dose of chemo. I’m going forward on the assumption that this is ever. It is a hard lesson to learn to not ask what if. Doubt is so very difficult to banish. There can be no room for doubt here – we must simply and purely believe that all will be well.
Today was sweet and sour, like most of our days. You learn to spit out the sour bits and only taste the sweet. Gavin and I spent a quiet morning together doing puzzles until Bubby arrived, then we all went out for a little jaunt around the halls. On our travels we bumped into Mary Sunshine, the resident clown, who gave Gav a bubble-catching net to play with. We all went back to the room to do some window drawings. I stopped to get something and came back to find Gavin and Mary sitting on the floor together, drawing outlines of Gavin’s feet on the windows. It’s rare for him to be so friendly and open with a stranger, it made me happy to see him chatting away to her and choosing colours.
Unfortunately, there was no nap today and his chemo nausea set in almost immediately. Of course, Gavin waited until I stepped out for an appointment before vomiting for Bubby. This seems to be happening a lot lately, the moment I leave my poor mum is left in the midst of Gavin-cleaning chaos. When I came back, Gavin was getting quite manic, as he tends to do after not having his nap. He still wants to play, but is too tired to focus on games and jumps from toy to toy in 15 second spurts. Needless to say, not a great time to attempt an NG tube change.
“Tubey” needed to be changed though and I’d been putting it off, so we got the nurses in there and began the process. Unfortunately, we were not successful. We got the old one out, but failed in getting the new one in. Gavin fought us tooth and nail and cried with the most heart-wrenching sobs. We finally agreed that he would allow me to try to do it instead of the nurse, but as soon as I began putting it in he would jerk his head away and let out a piercing shriek. It was really quite awful. He could barely speak through his sobs, but kept repeating over and over, Mama do it, mama do it. He wasn’t willing to let me try again though and finally fell asleep in my arms, still hiccuping from crying.
We decided that we’d wake him up in the early evening to have another go, but even with Daddy there to help and console it just wasn’t happening. It will have to be done tomorrow morning. The issue now is that he won’t get his calories in tonight that he needs. He agreed to eat a little bit of cereal, and I went downstairs to find some pasta for him, but he only ate one piece of rotini before declaring the pasta stinky. A message for the mums and dads: Be thankful when your child cleans his plate and asks for more. There is nothing more difficult to deal with, psychologically, than a child who doesn’t eat.
Isolation again on Thursday. The last mile of the marathon. We need your prayers now, your kind thoughts, your spells of protection, your energy. And mail is always great too!