Journal entry August 3, 2014
Madox had a really terrible night. He woke up every hour because of discomfort, to use the bathroom or just unable to sleep. I blame the damn dexamethasone. I know the tumour is also the cause, but the dex just makes it worse. He now needs both of us to help him go to the bathroom because he has become so weak. One of us will hold him standing while the other pulls down his pants, then we have to gently sit him on the toilet. He hates every minute of it.
We went downstairs and stretched him on the floor then massaged him. He fell asleep for about 20 minutes during the massage, but just couldn’t stay asleep. We tried eating breakfast, but it took him so long. He would chew each bite so much trying to prevent the choking and coughing. It is getting so hard for him that I know I will have to put in an NG (nasogastric tube) soon. I know I should do it now but, I don’t want to take away his ability to taste his food, and his independence of feeding himself. I will try soft textured food today and see how that goes first.
He doesn’t look in the mirror anymore. When I tried looking at old photos with him the other day, he just started to cry. 🙁 Everything is changing and he doesn’t recognize himself anymore. So I did what any mom would do, I lied. “We just have to get you off the steroids, and your cheeks will go back to normal.” He just quietly responded with “okay.” I was so sad saying “but we can’t right now because of the swelling in your brain. Maybe on Thursday after your MRI we can start weaning you off?” I had to remind him of how bad his headaches and nausea were when we tried weaning the dex last week. Poor guy. He looked so disappointed and defeated. I can tell he knows I am lying. He knows what is happening to his body, to him. Stupid damn dipg. I HATE YOU SO MUCH!
After lunch Madox went upstairs for a nap, but he asked to sleep in his own room. He hasn’t slept in his bed in months. So I laid down on the floor next to his bed to catch a nap myself. With Madox’s memory off, he awoke with such a panic and he became frantic. He shot up in bed crying and hyperventilating, like he just had a nightmare. I couldn’t calm him down so I picked him up and carried him downstairs so dad and Valin could help calm him. He kept screaming his left side hurt, so I gave him a lot of breakthrough medication. Repeated it after 15 minutes to ensure he is free of pain. We think he woke up forgetting about his illness and couldn’t feel his left side which spiralled him into panic mode. How awful for him. So terrifying.
We decided it would be good to go out for a short bit, so Madox isn’t always at home. We went to visit his nonni (grandparents) and sat outside under the canopy for a while. He even tried to play some bocce ball too, but that was difficult for him while in his chair. You can see the heartache in both their faces as they watched Madox try to eat. I told him I may need to put the NG tube in soon and he quietly responded “I know, but I really don’t want one.” My eyes filled with tears when I said that I didn’t want him to have one either. Marco got up and walked away so Madox didn’t see his tears.
This was only a few excerpts from my journal that day. So you can understand the struggle a child goes through with cancer.