he was refusing pain meds as constipation makes the pain around his feeding tube painful. his mouth...not so bad yet.

He can't keep anything down even from the feeding tube. so 3 times a week, he gets the IV fluids. He is in the fetal position in the car ride 2 hours a day and in bed. He is usually up and ready to go early to treatment. Today, I had to wake him right before we needed to leave. He just wants to sleep all the time and I don't blame him.

Yesterday was the first bad day. He was worse in the first 2 weeks, then had a couple of good weeks. It's been a roller coaster.

thanks to my support team above!!!