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.

Sunday, March 27, 2011

I'm here at UCSF with dad and Kimmie and Candy and Becky of course. 

I spoke with Dr. Kemp who said that he and Dr. Martin don't think that the 60 day treatment is an option for him. The benefits don't justify the length and toxicity of the treatment and he would just end up in this place again but will have spent 2 months in the hospital when he could have been at home.

They do want to do a short term chemo treatment that will take 2 days and he'll be here for about a week to recuperate. They are hoping that the treatment will drop the amount of leukemia in his bone marrow and ease his pain. If it works, he can continue to do this treatment every 10 days. He also could possibly do this at Feather River. 

If the treatment doesn't work, they said he has several different options for Hospice. He can either be at home with family members taking care of him with a nurse coming in a couple of hours a day and on-call, or he could go into a facility that deals with hospice patients, or he could stay here at UCSF in a "Comfort Suite" where they would keep him comfortable until he passes. The home hospice is his obvious choice, but the problem with that is that he cannot have IV painkillers at home, only oral. Those have not seemed to help his level of pain, and he requires quite high doses of IV Dilaudid.

We'll have to wait to see how he fares this week before we pick up again on that conversation.

He is a bit more alert today but still says VERY random things, can't quite follow a conversation, and gets really confused. He is a lot more stable on his feet and can move around by himself quite well. He has a nurse who sits in his room or outside the door 24/7 since he is so confused and is still a fall risk.

Saturday, March 26, 2011

Dad has been transferred to the 14th floor today in a single room. The doctor came in today and gave him 3 options. I'll briefly explain them.

Option 1: Decline any further treatment, go home and call in Hospice.

Option 2: Do a short term, mild chemo treatment, then go home and eventually call in Hospice.

Option 3: Opt for a very intense, heavy duty chemo treatment that would keep him in the hospital for 2 months and knock as much of the leukemia out as they can. The possibility of remission is slim to none, and the treatment itself may kill him.

Becky said she would like to talk to him about it tomorrow when I'm there. I have called all my siblings to get their feelings about the options, and I'll let dad know if he asks. We will all support him no matter which option he chooses.

Check out the American Cancer Society's information on Hospice care:
http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care  (click Next Topic to continue to the next page)

He has increased his dilaudid to 2 mg. every hour to deal with the pain. Becky spoke with someone (nurse/nurse practioner? I forget) who said that his mental state could possibly be due to the leukemia entering his spinal fluid and brain or it could be due to some of the medications. She did say he is a bit more alert today. 

He received more blood and more platelets today. He seems to be burning through both at rapid speeds.

Friday, March 25, 2011

Called UCSF today to see how dad was doing and talked to his less than helpful nurse, Susan. She said he needed blood and potassium but that his platelets were fine. I asked her how his mental status was, and she said his short term memory is still shot and he can't remember much at all. She said he was steady on his feet, so that is a bit better.

The doctors should be in today sometime, hopefully sooner rather than later. I'll find out from Becky what they think and if they have a plan or even an idea of what's happening.

Candy and her 3 oldest will be stopping by to see him today. I will be heading down on Sunday.

UPDATE:
Becky talked to the nurse practitioner who said that dad's blood is showing 59% leukemic cells. They are going to give him some softer chemo drugs to try to knock the numbers down a bit so he'll be in the hospital for a little while longer until he recuperates from that. After that, it looks like he wants to go home and have hospice come in to monitor his pain and treatment. He is also talking about getting a DNR (Do Not Resuscitate) in place.


They are trying to get him up to the 11th floor where they can better manage his pain and treatment.

Thursday, March 24, 2011

Cat scan results at the ER showed no problems, his blood counts were low, but not low enough for any transfusions. He's home now, but Craig talked to Dr. Martin's nurse and got his admit day moved up to today at UCSF. He still won't go today since they probably won't have a bed until Sunday.

Craig has been monitoring his dilaudid intake, which dad is not happy about, but they think he was getting too much since every time he wakes up, that's what he asks for. We're hoping that by giving him a smaller amount on a more regular basis, he'll do better.

He's fairly stable on his feet, and his verbal skills are a bit better, but it's obvious that something is wrong. He'll get blood work done again tomorrow morning, and I'm sure he'll need blood and platelets.

UPDATE:
UCSF called and they have a bed available today. Craig and Doug will be driving dad down this afternoon. Becky will head down this evening after she gets home and packs some stuff for the hospital. I'll be heading up to his house to say goodbye before he leaves today. I'll also try to get down to UCSF this weekend. Hopefully I'll get an update from Craig and Doug this evening as to why he's deteriorating so rapidly.

UPDATE:
Dad and the boys left for UCSF today at 4:30. He probably won't even get to his room until 10 p.m. or later. I saw him for a couple of hours today and he's not doing well. He's very weak, needs help to walk and get dressed, forgets what he's doing, and doesn't make much sense when you talk to him. He'll have a moment of clarity, and start saying or walking somewhere, then forget what he was doing. 


When we got him ready to go, we started heading towards the front door, and he turned to go back down the hall toward the bedrooms. We asked him what he was doing, and we needed to leave, and he paused, and softly said, "One more time." He then headed into the master bedroom, looked around, and then must have forgot why he was there, cause he started to take off his jacket and shoes. We had to remind him again where he was going and he just hung his head down, and said, "oh".


We got him out to the car and he looked at me and asked me where I was going, and I told him I was going home and the boys were taking him to UCSF. He gave me a hug and a kiss and told me he loved me, then got in the car to leave. I think he knew that might be the last time I see him. He just doesn't have enough energy or the attention span to say more.


The dad I saw today is not my dad. MY dad can put on his own jacket and shoes. MY dad can walk to the bathroom by himself. MY dad could eat more than 2 bites of food at a time. MY dad could always finish a sentence AND a long, drawn out story. MY dad was the strongest man I knew. MY dad would have told me how sad he would be to leave us all behind and he would tell us all how much he loves us. The guy I saw today was not MY dad. MY dad is gone. And I miss him so much already.

Wednesday, March 23, 2011

Dad got his bloodwork today and needed more platelets again. After his transfusion, he went home and took a very long, very hard 3 hour nap. When he woke up, he was apparently not all that steady on his feet and his mental and verbal skills had taken a dive. Becky had gone to work since Craig and Doug were home to take care of him, and she did not like what she saw, so they took him to the ER to get checked out.

He's at the ER now and the doctors are ordering blood tests and a cat scan to see what's going on. Craig will text me as any new information comes in. I'll update the blog in the morning with any news.

I'm thinking we'll be needing to take him back to UCSF sooner rather than later as his condition is worsening. Strange, since they took him off of the Ativan and he hadn't had any dilaudid since this morning. There was no good reason for him to be so unsteady and confused.

Tuesday, March 22, 2011

Dad is a bit more stable on his feet today, but it seems his mental functioning is quite worse. He's not making any sense and is having very random thoughts. He's been picking up the phone and dialing random numbers, but he doesn't know who he's calling or why and when he gets someone on the phone, he says stuff that doesn't make any sense.

So, if he calls you, which he might, be aware that he might not know who you are or why he called.

Craig thinks this is a side effect of some of the medications he's been taking and is trying to figure out which ones are the culprits.

We did not take him to the ER yesterday since he started to walk and talk a lot better. We think he just may have been really tired from all the walking he was doing over the weekend and the extra meds he took the night before. If we can't figure out why he's confused, we'll take him in to be evaluated at Feather River. 

UPDATE:
Doug got into town today and he and Craig and Becky sat down and tried to figure out why dad is getting so loopy. They are pretty sure it's the Ativan that he's been taking. It seems to scramble his brain. They are going to stop giving it to him and see if he comes back to reality. He was already getting a bit better this afternoon after it starting wearing off a bit.

Monday, March 21, 2011

Dad seems to have taken a turn for the worse in the last 2 days and is very unsteady on his feet and is getting quite confused. He needs help to walk anywhere as he is at serious risk of falling if he's left on his own. Craig is still here and Becky came home from work to be here with him also. It is a 2 man job if anyone is to get any rest at all. He is up numerous times a night and wakes up every hour or so. 

He had his blood drawn today and his numbers were fine, although his platelets a bit low so we are looking to get him a transfusion this afternoon. We will also try to get him over to the ER to have him checked out since there's not a good reason for the weakness and confusion. If he is o.k. to travel, we are also going to try to talk him into going back down to UCSF to get re-admitted. He is not safe at home and he needs more expert care than we can manage here.

Sunday, March 20, 2011

We all (Mom, me, Wendy, Craig and Nancy) visited with Dad last night at his house. It was a nice visit, lots of laughing as usual and some moments of sadness. He gave us all our "birth shirts" from when we were born. For every kid, he took a white T-Shirt, wrote our name, date of birth, weight and height on the back, and wore it for a picture. He did this with all 7 kids. I was really happy to get mine! We've seen those pictures our whole lives, and it's such a great memory to have.

Dad was really weak and got tired easily. He would take a break, go lay down and fall fast asleep for 10 or 15 minutes, then emerge a bit refreshed. We left when he started to look like he was done for the night. 

It was a very nice visit and I'm glad everyone came to see him again. It was a bit hard for me to see him say goodbye to Wendy and Nancy as it may very well be the last time they see him. It's hard to lose your dad, and it's hard to say goodbye and walk out the door. I'm glad we get the opportunity to do it though, I just never thought it would be this soon.

Friday, March 18, 2011

Preliminary results came back. Cancer is still there. Not good news. I'm heading down today to meet up with Mom, Wendy, Craig and Nancy. We'll talk to the doctors today to see what the plan is from here. Sounds like there's another treatment option available that's had success before. Let's hope.

UPDATE:
We're here at UCSF and it looks like they'd like to give dad a break before starting the next round of chemo. He'll most likely go home today, have blood tests every couple of days, then return to the hospital a week from Monday. The next treatment plan will be a 5 day course of chemo drugs, with a 3 week recuperation.

At this point, there is still a slim chance of remission, but it's not likely. The doctor did tell us that we should look into clinical trials at clinicaltrials.gov. He thinks there might be some at Stanford and City of Hope in Los Angeles. We'll look into those and see if he is a candidate.

Thursday, March 17, 2011

Dad got platelets today and his bone marrow biopsy. We should get the preliminary results this evening.

Blood counts were down a bit again today, so he'll get red blood today too. He still has no pain but is quite nauseous, so they give him Zofran for that every 6 hours or so. He's feeling good, so that's a great sign!!

Wednesday, March 16, 2011

Talked to dad this morning. His numbers did not come up again, and in fact dropped a little bit. He was going to ask the doctor about putting him back on the neupagen to get those numbers to climb again. He really wants to go home this weekend, especially since most of the kids will be here to visit!

The great news is that since yesterday, he has been sleeping well, feeling great, has had NO pain meds, and NO PAIN! He said he hasn't felt this good in a long time. That was very promising to hear. 

They have scheduled the bone marrow biopsy for 1 p.m. today and hopefully we should get the preliminary results tomorrow. Everyone is still hopeful that he is in remission, and if they way he feels is any indication, he will be!

UPDATE:
Nurses overruled the doctor on the biopsy since his platelets are so low. They want to give him platelets before the biopsy and they couldn't get them in time today. So, the biopsy is scheduled for 10 a.m. and the platelets an hour before at 9 a.m.

Tuesday, March 15, 2011

Doctors came in last night and were hopeful that the increase in numbers from Sunday to Monday were a possible sign of remission. They took him off of the neupagen to see if his numbers will climb on their own and if it will help alleviate some of his pain. Dad seemed to have some renewed hope of remission. The next couple of days will be a good sign of that. He also told the doctors that he would like the biopsy before he is released home regardless of what his numbers are doing. He doesn't want to be sent home without knowing if his bones are packed with leukemia or not.

His numbers today weren't as we were hoping. They dropped a bit. This could be due to the lack of neupagen helping out, but we won't really know much until the doctor comes in this afternoon/evening to decipher the results. Dad is bummed as you can imagine, and with the new chest pain that he's having today, he's quite worried. It would be nice to have some answers soon.

UPDATE: 
Doctor came in and said that they would like to do a biopsy soon. Could be as early as tomorrow. They are still pretty positive that he's in remission and that his pain is due to the neupagen and his good blood cells increasing. Becky will also be going down tomorrow to be there with him this week.  They are also saying that he could possibly go home this weekend.

Monday, March 14, 2011

Talked to dad this a.m. His numbers have been coming up, although very slowly. His platelets are still too low and he's been getting transfusions several times a week. They said that if his numbers continue to climb, he could be released as early as this weekend. They want to do a bone marrow biopsy before he leaves.

Seems his head has been hurting for the last 2 days, and he's having some bone pain in his shoulders and thigh bones. In the past this has always been bad news, but it could also be a reaction to the neupagen shots that's he's been getting. He's never had this kind of reaction before, but he's also never been in this poor of shape before either!

I'll call him again tonight to find out if and when they will be scheduling the biopsy. That will give us the information we are looking for to see if he is in remission, or if the pain he is feeling is because the leukemia is back and progressing fast.

Sunday, March 6, 2011

Talked to Becky tonight who was on her way home from spending the weekend with Dad in the hospital. She said his counts have finally started to come up, although very slowly. That was to be expected, so even though it's frustrating, it's good news. She said he's actually put on a little bit of weight too as he's been eating more. They've given him something to stimulate his appetite and it seems to be working! She said he had to get up in the middle of the night to go get some pretzels to snack on!

I'm sure he'll be at UCSF for a bit longer as his numbers need to come up a lot from where they're at.