I wrote this email to his parents a bit ago:
“I stayed with Chris again last night, he has been really anxious lately.
Rhiannon is staying with him starting tonight – she had some car issues.
Chris took his sleeping meds for the first time last night in awhile, the nurse cleared it with the pain management team and they gave him half his usual dosage.
He fell asleep at 9 and I fell asleep about 10. He woke me up at 11 telling me he was scared and hallucinating and not to be mad at him. He thought that something was trying to get him and he cut his IV line and hid in the bathroom. I called the nurse right away and she flushed the line and it was ok so they didn’t have to replace it.
He was very scared and thought the nurse and I would be mad at him. I laid in bed with him for awhile. He sometimes fell asleep for 10 or 15 minutes but he is mostly extremely restless and confused. He hasn’t had a full night’s rest since Tuesday night. He wanted to sleep on the couch instead of the bed so he tried to sleep there for awhile. He woke up after briefly sleeping and starting talking about how this was a new room. When I told him that he has been in this room for almost 8 days he got very upset and said I was lying to him and wouldn’t let me sit next to him. I called the nurse in and he calmed down and he let me try and explain to him the series of events since we got to Houston. He thinks he stayed in the room next to this one before he was in this room. Since his mouth is numb he drools frequently out of his mouth and sometimes doesn’t notice it. This makes him think of his roommate in Kansas, Jr, who died. He drooled a lot and Chris said in the past he didn’t want to do that, it scared him.
I fell asleep at about 5 and woke up at 8. I did get him to eat some yogurt for breakfast. I have been trying to get him to sleep but he keeps getting up and then thinks he has to get ready to go somewhere. He frequently forgets he is attached to an IV pole and I have to be aware every time he starts to move so he doesn’t pull it out of his chest or the wall. The daytime nurse he had the past few days has been wonderful and sat and talked with him for awhile yesterday when I was gone for a bit.
I’m going to talk to the Dr. who comes by from Psychiatric today to see what help we can get him so he can actually sleep. I asked him last night if he wants someone to help talk him thru his anxiety and make him feel better and he said yes please.
I started typing this email about an hour minutes ago, I have to stop and try to understand what he is asking/saying and help him. He put clean pants on this morning but he wanted new clean pants. He was laying in bed but to change his pants he needed to walk across the room to the couch, and I had to remind him he’s hooked up to the IV which is also plugged into the wall.
I know I’m probably rambling, I guess I just wanted to give you both a more complete picture of how he is.
Rhiannon will be here for a few nights and then I think Mark Sessums is coming into town to stay with him at night for a bit after that.
When he starts chemo this week he will feel even worse, and I can’t imagine how this is going to be when he isn’t sleeping, is confused, has problems figuring out the right words to use, and is getting intense chemo that will make him feel bad. He’ll also have the two spinal taps a week with chemo.
I just want him to start feeling better, to at the very least sleep at night or day or sometime.
Rhiannon is coming this afternoon and I am going to stay with her here a bit to help her get acquanted with what he needs and who to ask and what he can’t have. He frequently asks to go home and I have to tell him he can’t go home. Since he is having his brain MRI with sedation tomorrow he won’t be allowed to eat or drink after midnight.
I’m going to start staying at a friend of a friends house tonight. She and her husband and son live close to the hospital and are giving me a key so I can come and go as needed. She has had friends and family diagnosed with cancer so she knows what this process is like.
I’m going to get to the hospital early tomorrow morning to make sure I don’t miss any of his doctors coming in.
He likes having the pictures to look at on his bathroom door. I asked Brenda to mail me a picture of her so we can put it up. If I remember to I am going to find pictures of you both and Brenda and get copies from Walgreens. But can you please send me some pictures of you both and any other pictures you think he would like to the mailing address at the hospital?
When you guys are all feeling better I think it would be good to come down and see him, even if you just stay a day. He’s feeling very scared and lonely.
I love you guys very very much and this has all been so hard for all of us. But he can get through this. When he says that he doesn’t think he can do this anymore I tell him that I have faith in him, and that he can do it, and that I will be here for him and help his get through this. I think and hope it helps him.”
Part of me feels cruel telling them how horrible this is for their son. They are 3.5 hours away and feel helpless. Is it cruel of me? I don’t know. I wanted them to have a clear picture of how he is, no matter how horrible it is that he feels. They are his parents and I guess I think they need to know.
They all have colds, so until they are feeling better visiting is out of the question. I’m always aware and afraid of getting sick. If I get sick there isn’t anyone to do what I’m doing.
He hasn’t lost any weight. Before I thought his belly was from when he was on steroids and ate a lot. But that was months ago. I’m starting to wonder if his big belly is from cancer masses, is from his spleen full of cancer. I don’t know. The doctors always feel his belly and ask if it hurts. He always says no.
I’m afraid of asking the doctors too many questions in front of him, he is already so confused.
But I will need the doctors to tell me soon what a realistic expectation of this situation is. I want to know what they can do, if anything, if he does not respond to the next chemo. If his chances are dire then I need to prepare myself and my son. Magnus doesn’t even know what cancer is. There is a program in Austin that helps children of any age understand cancer:
But I’m not there to get him to an appointment. Hopefully we will be back in Austin sometime in the next week or two and I can set something up for him. All he knows is that daddy is sick and he goes to the hospital and dr. But I think he needs to be told a bit more. Because he has a cold right now and that means he is sick and I don’t want him to confuse that with his dad’s cancer.
Just saw a dr. from Psych and she is prescribing him Haldol to help with is anxiety. The meds he was on before for his mental stuff had to be stopped because they were interacting with a antibiotic he was on. (Note to self: they can be restarted February 1st)
I help dress and undress him. I put lotion on his dry feet. I dry him after he showers. I explain to him where he is and why he is here when he temporarily forgets. I ask him if he knows what city he is in, what hospital, what month it is, what year it is. Sometimes he answers incorrectly but he usually remembers. He’ll say one word or phrase when he means something entirely different. I’m scared that this is an indication that the cancer is in his brain, like they suspect. It could just be from all the meds he is on. We won’t know until maybe Tuesday.
He just has his vitals checked and he has a fever. He has had to be on blood pressure medicine because it has been high off an on. His feet and legs and left arm and hand are puffy from water retention. He can get something called lasix to get rid of the fluid retention but first they have to know what his output vs. input is. Output meaning urine and input meaning water. He needs to pee in a urinal and not flush it so they can check the output, but half the time he doesn’t remember and uses the toilet or flushes his urine. So I’m trying to help him remember that too.
So many words, so many lists/observations. I collect data and communicate it to all the appropriate staff and ask questions and answer questions. I feel extremely helpless.
I miss my husband I miss my husband I miss my husband I miss my husband. I don’t want him to die, oh fuck I don’t want him to die.
ad astra per aspera 
It ain't over yet Dandy. I completely understand your mind jumping ahead and in some ways it is a realistic thing to do, but don't put your heart into it. Stay focused as best you can on RIGHT THIS MOMENT and what it needs. And do something for yourself. Favorite food, walks, call someone (and you can always call me if you like 425-753-0400), buy a new shirt, read some nerd books….anything you think you'd do under normal circumstances. You need support and that is fair and reasonable.
Your sacrifices do not go unnoticed.
Much Love to you Sister.
It ain't over yet Dandy. I completely understand your mind jumping ahead and in some ways it is a realistic thing to do, but don't put your heart into it. Stay focused as best you can on RIGHT THIS MOMENT and what it needs. And do something for yourself. Favorite food, walks, call someone (and you can always call me if you like 425-753-0400), buy a new shirt, read some nerd books….anything you think you'd do under normal circumstances. You need support and that is fair and reasonable.
Your sacrifices do not go unnoticed.
Much Love to you Sister.