This is our second sleepless night in a row. Mathew’s pain level is rising again and a new area is hurting him significantly today. John and Mathew mentioned it has hurt in the past but not where he is pointing at, that I can see.

First the relief that Mathew started to eat earlier today. In the afternoon he mused that his birthday is on Friday. Then he asked when Kristen was coming in which is tomorrow (tonight now). He was quiet for a few minutes then declared his hunger. He ate Easy Mac, 2 cookies and a Nestea. It is almost 2 am and he is eating again; this time John’s chicken pot pie and a Nestea. Nestea is now Mathew’s go to drink when he wants a change from the gallons of water he drinks daily.

Growing up Mathew never liked the Kraft Macaroni and Cheese that comes in a box. Kristen and I ate it every once in a while but just us. About 6 months ago Mathew decided to try Easy Mac; it is made by Kraft and is a fast, microwavable mac & cheese very close to the classic Kraft dinner. For some reason he’s developed a taste for it… weird.

Mathew realised that he needs to eat to fuel his body. He wants to be alert for his birthday and so he can visit with Kristen. He is more alert with a tiny bit more of energy. Sometimes he needs a gentle reminder that, just like a car, his body needs fuel to run.

The Extramural nurse did a visit today and flushed Mathew’s port. Mathew is losing a lot of weight because he isn’t eating much on the days he does eat and then there are those days when he has nothing at all. As was the case the last time he lost a lot of weight it means his port moves around in his chest and can be difficult to pinpoint where to put the needle. His nurse, Christine, gets it in every time but there are other nurses who struggle with it and end up poking Mathew multiple times. The Emla cream does a good job of numbing the skin so Mathew doesn’t feel the needle pricking the skin but if it doesn’t hit the mark and engage properly then flushing the saline in stings the area under the skin. He can tell when the needle isn’t in but today the process went smoothly.

The nurse had a look at the cyst on Mathew’s head and she thinks it ruptured and is leaking. When I asked if it should be removed she said the doctor will decide but may not elect to do it….given Mathew’s life expectancy. That sucked.

Another decision we made today, looking at our log book, was to increase the dosage amount of the long-acting (slow release) morphine. Rather than bump up to the 60 mg we are trying the 45 mg which will hopefully give more relief but not knock him out or make him too groggy to do anything. It takes a couple of days for the slow release to build up in his system and he is still getting some break-through but cautiously. He is getting it almost every 1-2 hours right now and perhaps with his meal he will fall asleep so the long acting can work its magic.

Mathew’s significant pain today is along his right side at the bottom of his ribcage or just below. His right arm is also hurting. Earlier Mathew shrieked when trying to move about so hopefully he gets some relief very soon.

For a while this afternoon the Nintendo Switch was turned on and I got to check this nifty new gaming console. The docking station/console is tiny compared to his PlayStation 3 or 4 ~ maybe one quarter the size! The hand held portion just slides in and out of the docking portion, which seems very easy to damage… the new type of controls is a learning curve but the graphics and sound are beautiful. There is only one game, maybe two, available for the Switch right now, and the Zelda game is frustrating players by how often their character dies. It’s a good thing they also get multiple lives! Mathew is already eyeing a couple of other games as their launch dates are in the near future.

Mathew is sitting in his chair as this position gives him some pain relief. I was granted bed privileges while he sits so long as I don’t say anything about how nice a real mattress is. So I’m off to take advantage of the luxury before I am again banned to the cot.

Good night.