103. Start of Fourth Cycle - Sep 15, 2026

Since the last entry, Owen has had three seizures.

The first one was Aug 26, and I was not with him.

He and Mis worked hard in the backyard that day and left to grab lunch. He had his seizure at the restaurant. Mis was a champ. She called me as it was happening and stayed calm. He got Owen safely to the ground and the restaurant folks were very supportive. Mis got him home safely and I met them there.

The next two were at home with me. I stayed with him and made sure his medical team was up to date.

It’s hard for Owen. He has lost the drive for self care. I have to be with him while he showers because we both know he seizes when he overheats. He needs to be seated now in the shower. I am going to be more proactive about his hair cuts because it does make him feel better.

We are in Houston right now and had a full day of appointments that started this morning. His appointment with the team was much better than one last month. He voiced that he didn’t want to continue if he continues to “not feel good.” He has lost weight because he isn’t eating much. And he has no energy.

But the team is ready to get him to better quality of life starting with his nutrition and tackling his constipation and lack of appetite.

The team here is motivated to get more answers about his seizures and if they are tied to his heart.

It’s hard. I wish I could help him feel better. He is sleeping much of the day and has no energy to do anything. I try to get him out of the house to at least get a drink from Dutch Bros or Candy Cloud. But most of his awake hours is on the couch.

I’ve been researching electric wheel chairs. But quality ones are really expensive. I don’t want to get something that he wouldn’t want to use but I feel that he could save energy and enjoy being out if he had one. Not sure what I can do.

I’m not sleeping well. It seems that my brain starts playing out the worst late at night. I wish that we could eliminate cancer from him, from children, from the world.