Monday, April 4, 2011

Saw dad this afternoon. He's doing good. Voice is stronger, but he doesn't say a lot that makes sense. He's still restless and wants to walk a lot but the nurses really want him to lay down with his feet up since his legs and feet are so swollen. They were going to give him half a dose of Ativan to try to get him to stay put for a little while.

He is aware of his visitors and recognizes them. When they leave he seems a bit bummed and calls them back to say something but forgets what it is when they come back. 

He held Owen (4 mos.) today and seemed to really enjoy holding him and snuggled with him and kissed his head a lot. It was very sweet. I'm hoping to bring Bryce and Lucy up tonight or tomorrow to get a picture with him too.

Sunday, April 3, 2011

Becky said dad is feeling much better today. More mobile, and can talk a bit more. At least they are able to understand some of what he says and it makes sense too.

I went to visit him this afternoon but after doing hot laps down the hall with John Curtis, he was spent and was snoozing when I got there. I had to leave to retrieve my screaming baby so I didn't get to see for myself how he was doing.

Craig and Doug are on their way now, and I'll be up there to meet them shortly. I'll update when I can.

UPDATE:
I went back up to see dad tonight and was very surprised to see him walking well and moving all around the room and hallways. He had been doing more laps with Mike and Pizza Greg and I thought he would have been tired, but he was still wanting to be on the move. When Craig and Doug got there they took over and he didn't stop until about 9 p.m.


At one point, he was outside and he grabbed onto Doug and I and just started walking fast. I joked that he was trying to escape, but I think that actually might have been true! He checked out every area, would stop when he realized he couldn't go any farther, then turn around and go somewhere else. Finally it got dark and cold and Mike brought out the wheelchair and we got dad to sit down and brought him back inside.


I left as they were getting him ready to settle down and go to bed. Craig and Doug were going to stay with him and Becky was going to head home for the night to get some sleep. I hope he rests well, he really needs it after all the exercise he got today!

Saturday, April 2, 2011

I went to see dad today at PHH. When I walked in, I was not at all prepared for what I saw. Dad was sitting in a wheelchair, VERY swollen with edema, with his head hanging, mouth open, and fast asleep. I talked with Becky for a minute before I sat next to him and rubbed his back gently. He woke up, looked at me, and looked a bit surprised to see me. He did this same thing a handful of times before he got used to seeing me there.

He is very shaky, can't stand on his own, and can't talk except for a gravelly whisper that is very hard to understand. A nurse came in to give me an update on his meds and said that they have been giving him Ativan since he's been so restless and is a danger to himself as he's a fall risk and could pull out his IV. I asked them to please stop giving that to him for now until Doug comes out to see him tomorrow. It makes him seem much worse than he really is.

But, I talked to the nurse and she said, "this is what happens at the end". I asked her how much time she thought he had left, and she said, "days". 

I had only been there for about 10 minutes, but I had to leave. I gave him lots of kisses and hugs, and he wanted to stand. He wrapped his arms around me as best he could and gave me a hug and a kiss on the cheek. I told  him I loved him and he told me he loved me. He then gave me a little head bonk, and that's when I really lost it. I gave Becky a hug and barely made it to the parking lot before the sound of the puppy whimpering in my throat made it to my lips in a full blown sob.

I'm not sure why I'm telling you all this, but I felt like I needed to write it down before I forget it.

I imagine most of his problems are from his declining blood counts. He hasn't had blood or platelets since leaving UCSF and I'm sure that's why his voice is gone and he's so weak. He's also very pale. If your blood carries oxygen to your brain and organs, then what happens when you don't have enough cells to carry that oxygen???

Leukemia sucks. Cancer sucks. Losing your dad SUCKS.

Friday, April 1, 2011

They are getting ready to load up and leave UCSF shortly. Becky will be going with dad in the ambulance. They estimate that he will arrive in Paradise at the Hospice House around 1 p.m. Becky said they are ready and waiting for him.

Kimmie visited the PHH last night and said that it's very nice and home-like. Each room as a patio and walkway out to the yard. She said there is currently only one other patient there, so dad will get plenty of attention and care.

UPDATE: 
Talked to Becky this afternoon. She said they were there and dad was getting settled in. She said he was really tired, but the room and the facility is wonderful and it should be quite nice. I'll be heading up in the morning to see him and I'll let you know how it goes.

Thursday, March 31, 2011

Becky talked to the Palliative Care people who said that now is a good time to go ahead and transfer dad to the Paradise Hospice House as they can take care of him the same as the nurses can at UCSF. 

The doctors agreed and they are getting him ready to transfer him via ambulance up to Paradise. They tried to get him transferred today, but couldn't get it all organized in time, so they will transfer him tomorrow morning. 

Wednesday, March 30, 2011

Talked to Becky today. She said dad had a really restless night and was even up at 2 a.m. wanting to take a walk. That didn't last long and he ran out of steam and had to go back to his room. She said he slept quite a bit today to make up for it. He's not making a lot of sense today and they're having a hard time understanding what he wants. I was hoping the chemo would have made some of that a bit better, but it hasn't. It is either due to the leukemia being in his spinal fluid and affecting his brain, or it could be the 2mg of dilauded every hour that's he getting. Hard to tell.

He has stopped asking for pain meds once they upped his dilauded drip so that's a plus. They'd like to get him off of the IV painkillers altogether, but that's a slow process. They said they want to keep him until next week sometime to follow him a bit more and see if he improves.

Becky has been talking to the Palliative Care folks (Social Workers) who have researched facilities for his care when he leaves UCSF and they said that one of the best places for him would be in Paradise at Hospice House on Bille Road. It's a 6 bed facility and they have beds available. It is one of only 3 like it in California that provide 24 hour inpatient services in a home like setting. It seems to be the answer that we need for when dad comes home. His care would be more than family and friends could handle at his house and having him in Paradise would be wonderful as he would be local and everyone could visit much more often.

Here's the link to FRH Paradise Hospice House:   http://www.frhosp.org/medical/hospice.php

Monday, March 28, 2011

Talked to Becky and Dad this afternoon. He had a really rough night, didn't get much sleep and couldn't even really settle down to sleep until 2 a.m. They have increased his Dilaudid to 2mg/hour from the 1.2 it was at yesterday. They also started the chemo this morning (Methotrexate). He'll get the Aspariginase next and then he'll just have to recover from those before he can go home.

He speaks somewhat clearly, but his thoughts are a mess and he doesn't make much sense. I think he has a thought, tries to translate it to words, and his lips and tongue decide to spit something else out entirely. He is sometimes aware of this, and sometimes not. The increase in dilaudid is not going to help this and will only make it worse. 

Don't be surprised if you get one of those phone calls from him at an odd hour that don't make any sense. He must have been thinking about you and wanted to talk to you, but by the time you answer, his thoughts have turned into tossed salad. Just be happy he was thinking about you.