I have spent every day but one at the hospital with Danny for 6 or more hours. Sometimes he's sleeping, sometimes awake chatting with me, sometimes laying watching TV. I'm just there to be there whether he "needs" me or not. Could be at times I'm there for me. I am taking some days off and working some days. But, I will not be away from Danny lest the number of days he's around me is shortened. The "empty nest syndrome" kicks in every now and then even though Julie is still here. I am NOT talking about the obvious negative outcome of which I will not even write down. I'm talking about when he's healthy again he will be out and about on his own as he should be. It was hard enough watching Julie leave home years ago. I'm just used to Danny being around. But I want him happy living the life he wants to live by the grace of an unselfish act of love from a donor.
The meds he is getting are chemo meds. Sunday he said that Saturday he really wasn't feeling all that good. After I left (and we went out to dinner with friends) he sat in his hospital bed with leg cramps, stomach cramps, and lack of sleep. He showed me the vein on his left arm, that the IV was in where the meds went. It was dark and outlined from wrist to shoulder and it hurt to touch it. Must have been the meds we thought.
So Sunday when he was feeling a little better (and I was feeling slightly guilty that I was eating out and drinking beer) he said "My pinky toenail has touched the ocean of chemo meds. I can only imagine what a cancer patient goes through."
So, today, Monday, his dad and I went down early because he was getting pheresis again and the chemo med (Velcade). He was already up and eating. By eating I mean a few bites here and there. He has not eaten much the entire week he's been there. Weight getting a little low. Morning blood test had been done. One of his doctors came in and told us he will get his pheresis but not the meds because his white cell count was too low. They expected that but his got low faster than expected. So he was smiling a little. Still pretty tired. Sleeping in a hospital is not that easy.
Dr Book said if his levels weren't up tomorrow they would wait till Wed to give him the meds. He's supposed to get out on Thursday but now it's a day by day thing. Then they will do a blood test and two weeks later another one to make sure the levels are staying down. As needed they will give him more treatments but hopefully not the long term hospital stays.
Plasma pheresis requires a catheter in his neck to pump blood from him into a machine that removes and replaces his plasma and pumps it back into him. His neck is uncomfortable for the entire stay but necessary.
That boy NEVER complains out loud about what he thinks is necessary to endure to live. If they ask him specific questions he'll answer. He hasn't been sleeping well but he hasn't asked for a sleeping aide because he thought he'd just get through it. I wish I had said something to the docs. Our chaplain friend, Wendy, told them he wasn't sleeping well and they ordered something for him. He said thanks that would be awesome. He thinks even though he's got it rough it's not nearly as bad as so many others have it.
As Doc Holiday said, "There is no 'normal' life, there is only life. So, go live it."