100. MDA - Tuesday, Aug 18,2026

Not a good start to our day.

Owen’s trial medication requires us to document exact time that he takes the medication. He must take the meds at the same time everyday, plus or minus 15 minutes.

Because I’m not home everyday at the time he must take it, 0800, I have set alarms and reminders on calendars and in both of our phones.

I have added an app that requires him to hit a button when he has taken the medication. The app calls him in addition to an alarm.

On mornings I'm not there, I even text him to alert him and to ask him when he’s taken them.

Well he didn’t document the meds on a few days. And I was filling out the log this morning to see that he ignored some of these alarms.

Yesterday, I filled his daily medication containers to see that he missed over 6 doses of 7 meds he takes.

I try to explain to him that he is on a trial. That he will be disqualified if he doesn’t do as he’s asked.

And he tells me this morning that he doesn’t care.

I’ve shut up when he gets like this but this is becoming too much.

We went to his appointment with his Neurooncology team. He is on the verge of being disqualified. They have him continuing for three more months.

More bad news. I went to the pharmacy to pick up his antinausea medication and they wanted $36,000 payment for 30 day supply. They said they aren’t contracted with Tricare or the VA. And they said he needed Medicare Plan D, which he didn’t sign up for.

So since we don’t have $36,000 to pay, I walked away from the miracle drug.

The team is trying to contact BAMC to see if they can dispense it but Owen doesn’t feel it will happen.

I told him that we usually get routed onto the 35 when we drive home so we will go to BAMC tomorrow before heading home.

Yes, I feel he is giving up.