Tuesday, December 28, 2010

Well, it's been a month since I posted an update! Sorry! Holidays and having a baby really gets in the way of my computer time...  

He's been in, he's been out, he's been in again, and out again. He was in for his birthday on the 3rd, but that's a small price to pay when he was able to get home for Christmas and New Years, and possibly his anniversary too! Currently, he's home until after the first of the year. He's only got a couple of short little 4 day stays left and then he's on the oral chemo for two years. It will be nice to get back to some sort of normalcy after so many months of living in and out of the hospital.

Sunday, November 28, 2010

And, he's back at UCSF as of today. There was an open bed, and he took it. Should be a short stay and hopefully he'll be home by his birthday on Friday the 3rd.

Friday, November 26, 2010

Dad and Becky stopped by today to pick up a pumpkin pie. He looks better than he has in a long time! His hair is growing back but he's not too thrilled about the texture and style. He thinks the left side looks nappy, the right side looks like a surfer, and the top looks like Charlie Brown. I say, beggars shouldn't be choosers, and he should take whatever he can get! 

He called UCSF on Wednesday and they said they've put him on the schedule for this Saturday and he needs to call back to see if there's a bed available, which there probably won't be. There's a long list of people waiting for beds so he might be bumped for several days until one frees up. Until then, he seems to be enjoying feeling the best he has yet and even plans on doing some digging in his backyard. He's determined to get some sort of muscle tone back on his arms. He is not thankful of the new found jiggle...

Wednesday, November 17, 2010

Dad was released from the hospital today after finding out that his stomach pain was due to some sort of internal bruising and nothing too serious, and "passing" a temperature check to confirm he did not have a fever. Not really sure how he managed to trick the nurse who was standing right there, but I image with a little twist of the tongue and a few little sips of cool air, he was able to get the reading around 98. 

Am I right, Dad?!

He's due to call the hospital back next Wednesday to see when he needs to check in again for another round. Once again, not sure if it will be a short or a long stay.

Monday, November 15, 2010

They kept Dad over today to try to run some more tests to find the source of the pain. They did some sort of scan and found an internal bruise somewhere under his last rib. They don't know how it got there, but they have him doped up on Dilaudid, Morphine, etc. to deal with the pain. So, once again, he's a bit loopy and has a hard time remembering things and conveying what he wants to say. Becky will try to call the nurses station to see if she can't get some better answers and see if he will in fact be released tomorrow.

Sunday, November 14, 2010

Talked to Dad today, his drip was completed the other day and his numbers have dropped as they're supposed to, and now they're building him back up and getting ready to send him home possibly tomorrow.

The only problem seems to be having a lot of stomach pain and they ran some tests and don't see any reason for it. Hopefully they'll figure out what it is, or it will go away!

Wednesday, November 10, 2010

Dad waited around for several days until they finally had a room free today. He's down for a 36 hour methotrexate drip and then he should be home sometime around the weekend or early next week.

Still no idea what will happen after this treatment though.

Friday, November 5, 2010

Yesterday's blood test results weren't good. Looks like all of his levels dropped dramatically and he was one point away from needing another shot of Neupagen. He called UCSF and they decided to have him return this Sunday for the 4 day treatment instead of the previously scheduled 3 week program. They'll build his levels up and then start the 36 hour Methotrexate drip, clear him out, then send him home again. 

He'll find out what the plan is for the next round when he's down there.

He canceled his trip down to Santa Maria when he realized on Wednesday that he feeling weak and needing to take a break when took out the trash. Hopefully they'll figure out why his levels are dropping when he's home instead of increasing and he'll feel stronger for the next round. 

Wednesday, November 3, 2010

Dad had a blood test on Tuesday and the numbers came out just fine, so no need for a Neupagen shot. He goes again on Thursday for another blood test to make sure his numbers aren't declining. He talked to UCSF who said for him to come back on Tuesday of next week after his a.m. blood draw as long as his numbers are consistent. That means he'll be spending Thanksgiving in the hospital as he won't be due back home until the 30th or so. But, he will be home for his birthday on December 3rd!


Nancy is planning on coming out for a week when he gets back to drive him around and handle things for him. These long stays seem to take a lot out of him and he really needs someone to keep tabs on stuff for him and make sure he remembers to eat. If all goes well, Nancy might just be here for the birth of our 3rd baby! I really hope the timing works out that way.

I have reinstated his driving privileges after being fairly impressed that he not only called Feather River to make his own appointments, but called UCSF after researching the side effects of his medications to ask whether or not one of the ones he was taking was causing his counts to be so low. I figured if he has the mental capacity for that sort of thinking and reasoning without blowing a gasket that he's o.k. to get himself to and from the hospital. Let's hope I'm right!

He and Becky will be making one last trip down to Santa Maria this weekend to finish up her move and tie up all the loose ends from her relocation to Paradise. After this, no more road trips!! They seem to wear him out pretty fast. I'll be sure to let him have Becky drive most of the way so he can rest.

Saturday, October 30, 2010

Dad went to UCSF on Thursday, but was released today due to extremely low blood counts. When he arrived, his numbers were so low that they needed to give him 4 units of blood, a bag of platelets, and 2 shots of Neupagen. They said that they were quite surprised that he could even walk and talk with the lack of red and white blood cells in his body.

Becky went and picked him up today, and she said he looks a lot better (that would be the 4 units of blood!!!). He should be going to Feather River to see Dr. Maj twice a week for blood tests to ensure that his counts are improving. They estimate he'll be at home for another week or two before he can return to UCSF strong enough for another round of chemo.

Due to the info on his blood counts, I have once again revoked his driving privileges. He wasn't too happy about that, but I just want to see what his blood tests look like before he starts endangering himself and others on the road! I'm sure he'll be fine, but he needs to take it easy and try to get his body to start fighting back before he uses his energy and brain power for anything else.

Thursday, October 28, 2010

Dad is back at UCSF today for his last 3 week treatment. After this, it's 2 months of 3 - 5 day stays. Yippee! We're nearing the end!

If all goes as planned, he should be back well before Thanksgiving. Good timing!

Sunday, October 24, 2010

Dad got his platelets on Thursday and he's been feeling better every day. He and Becky even made it down to Chico for Lucy Jean's 1st birthday party Friday night. The chaos and the noise seemed o.k. for a bit, but then he either get overwhelmed or tired and quietly snuck out after cake. 

Wendy, Mom and I saw him again briefly yesterday when we stopped by to bring him some of our leftover food from the party. He really enjoyed the food, so much so that he ate too much of it and made himself sick. He ate things like green chilies in the enchiladas and spicy guacamole and it tore up his esophagus. After some milk and ice cream, he was feeling just fine and begging for more! I left out the spicy stuff this time and just brought him the pulled pork.

He did very nicely ask me if he's allowed to drive yet, and I told him no. But after some consideration, I told him I'd give him some reflex/dexterity tests and if he passed, I'd give him the green light. I don't know if he'll pass, but it sure will be fun to make him lean his head back and touch his fingers to his nose!!!

Here's some pictures from the party - he's looking much better!

Dad and Wendy

Cute!

Check out Great Grandpa in the background - look familiar?!

Grandpa and Lucy Jean

Wednesday, October 20, 2010

Dad got his blood drawn this morning, but no transfusion until the results come back and prove that he needs one. The cancer Dr. at Feather River called him back this afternoon and told him that he didn't need a transfusion but that he did need platelets. So, he'll be getting those tomorrow around 3 p.m.

He seems to be feeling better this afternoon and sounded like he had more energy. 

He did call me yesterday afternoon and admitted defeat after searching the house for an hour and a half for that second set of keys! I told him where I hid them, and he agreed to finally lay down and take a nap. He said he searched everywhere - couch cushions, shirt pockets, etc. The first set I put in the junk drawer, not so tough, and the second set I placed on top of the piano, right behind a book. Little did I know Becky's keys were sitting right there on the table, so he could have driven anyway. But, he promised me he wouldn't, and I believe him.

He said he's not scheduled to go back to UCSF until the 28th, so hopefully he'll recoup a bit more energy by then and be ready for the next round of chemo. This will be his last 3 week stay, then he'll be on two C cycles which are the 3 days in, 10 days out. He deals with those much better and has lots of energy. Plus, his appetite comes back and he actually gains a bit of weight!

Tuesday, October 19, 2010

Went to see Dad today. He's a wreck. I tried to get his transfusion bumped up to today but they need the head cancer doctor there to do the transfusion and he won't be there until tomorrow. The UCSF nurse told me to take him to the ER but he refuses to go. It's too long of a wait in a loud, bright place with lots of sick people around. Not good. So, we'll stick with the 8 a.m. appointment tomorrow morning.

I talked to Becky and she's going to take the day off tomorrow to take Dad to the appointment. I think that's a great idea. He really shouldn't be left home alone right now. He's not real steady on his feet and he needs to be reminded to eat.

I brought him a latte, a sandwich and some cookies which he devoured. I gave him some pain meds before I left and then mistakenly told him I'd hidden his keys. After that, the game was on! I heard him go to the bathroom and check the toilet tank. I think I saw him checking the wrapping on the spigot next to the front door where we used to hide a key when we were in school. Too funny! He was determined to find those keys. He called me about 5 minutes after I left his house and he had already found the first set and was on his way to finding the second. 

Next time I'll hide them MUCH better...  

Jen

Monday, October 18, 2010

I talked to Dad today and he sounds terrible. Not only has he been attempting to drive (not very successfully), but after they went out to dinner on Sunday, he fell and went headfirst into some bushes. His energy is at an all time low, he's lethargic, and his brain and the rest of his body don't seem to be working very well together. He really needs that blood transfusion, but it's scheduled for Wednesday.

I'll be heading up there in the morning for a playdate with the kids, but I'll be swinging by his house to check on him and hide his keys.

Jen

Saturday, October 16, 2010

Talked to Dad briefly tonight. He got home last night from UCSF. He doesn't sound so great. He said he had a lumbar puncture before he left UCSF which always seems to mess with his neck and shoulders. He's complaining of a really bad headache and neck pain. Last time it was from the position they had him in where he had to lean really far forward and kind of hunch over for a long stretch. It really strains those muscles and causes some serious aches and pains for him for quite awhile. Becky was getting him some pain meds while we were on the phone, so hopefully those will help and he can get some sleep tonight.

He also said he's down to 188 lbs. That means he lost quite a bit of weight this last round in the hospital - somewhere between 12-14 lbs. in 3 weeks.

I'll call him tomorrow and see how he's feeling.

Jen

Sunday, October 10, 2010

I talked to Becky today who is at UCSF with dad for the weekend. He's not been feeling great with all the chemo/meds they've been giving him, but the end is near. He has one more dose of Vincristine on Wednesday, then they're looking to release him within a couple of days after that if his counts come up enough. He's been getting the Nupagen shots to try to help boost his counts which were at their lowest today. They also gave him 2 units of blood and platelets to try to help bring up his counts and his color. 

Becky says he's pretty pale right now. He's not been sleeping well at all and is really itching to go home. Hopefully with the shots and the blood transfusion his counts will bounce back up quickly and he'll be released by the end of the week.

Monday, October 5, 2010

No real update, I just wanted to post this picture I found today while going through my Flickr photos looking for pictures to print. This picture was taken almost a year ago when Lucy Jean was born on October 22.

I'll post another picture this December when baby #3 is born to see the difference! He's looking much better than he was when the pictures were posted of him a month ago. He'll still be skinny, but he might have his mustache back!!

Tuesday, September 28, 2010

Dad went back to UCSF today for his 3 week treatment. He's in a "semi" private room which is not the most comfortable for him, but as soon as he goes neutropenic they'll switch him to a private room for the rest of his stay.

Becky is up and all moved in as of last Wednesday! And, she started her new job this week. That should make it easier on the both of them. 

I didn't see dad during his last home stay, but he said he's gained a little weight, is feeling much better, and his skin is starting to tighten a little and his muscle tone is firming up. He's far from looking like the beefcake he was, but he'll get there in time.

Wednesday, September 15, 2010

Dad went back to UCSF last Saturday for his 36 hour treatment. We were hoping that since he's feeling so much better and stronger that maybe this stay will actually be 3 to 5 days and not 7 like last time. He started the drip on Saturday night at midnight and was done by Monday at noon when they started the Rescue treatments. He got his blood results yesterday and they came back at .69 and they need to be around .05 before he can be released. The nurses thought he'd be ready to go by Thursday.

Well, he got his results today, and they were at .06! He was just waiting for the Dr. to make his rounds and give the official go ahead for his release. Only 4 days this time!!! Much, much better!

I was unable to pick him up this time but the Gridleys were in Yuba City when Becky called and offered to go straight down to get him. So, he'll be home sometime early this evening. I plan on going over tonight to re-do his med chart and set up his cell phone to alert him to take his meds on time.

He's doing much better these days and is getting stronger and more active. I hope this continues, but his next two rounds of treatment are 3 weeks each and quite a bit different, so we'll see how he fares.

Jen

Friday, September 3, 2010

Dad has been home since Wednesday and has had Nancy, Craig and Doug both staying at his house keeping him company. Nancy goes home today and Craig and Doug will be here thru Sunday. Dad doesn't have to report back to UCSF until Friday or later, so he'll be home by himself all week. So, if you're reading this, feel free to give him a call and stop by!!!

Nancy took some pictures this week so I thought I'd post a couple of our favorites here for you.

Jen

Driving?! Watch out folks, they've let him loose!

Dad with Lucy - she loves him! So flirty!

Dad and me - every pound he loses, I gain... 

Typical...

Wednesday, September 1, 2010

Dad is still at UCSF and will be for at least another day. Although his 36 hour chemo drip has been finished since sometime last week, his blood levels aren't responding like they should. They want his toxin levels to drop to .05 and they are at .09 today. It has only been dropping about .02 to .03 per day. They are trying to help flush his system with a drip but it's not working like they'd hoped.

Nan has been here since late Sunday night and hung out with me helping me with re-upholstering some cushions and waiting for dad to get released so we could go get him. I've loved the help, but it was time for her to take the drive down to see dad since he's not coming home like we'd hoped. So she'll be there today and tonight and will be on hand for the next two days if he does get released.

Jen

UPDATE: Although the levels are not what the Doctors like, they said it was low enough and they agreed to let dad go home today. Yippee! He and Nan are on their way back to Paradise now.

Sunday, August 29, 2010

Dad has been at UCSF for 5 days now and looks like he will be released tomorrow, pending some blood test results. They got a late start with the chemo drip as they like to do lots of testing before they start and they just really aren't in a hurry!

Nancy will be here tonight, so she'll stay at my house and play with my kids tomorrow while I go down and get Dad. He should be home for at least a week before he goes back for another round of the same.

Jen

Wednesday, August 25, 2010

Dad heads back to UCSF today for his 36 hour chemo drip. He should be back home by this weekend, return travel courtesy of Jerry Gridley. Thanks, Jerry!

Dad had his checkup yesterday for his gall bladder surgery and he said all is well, except his weight has now dropped to under 200 lbs. His blood work came back somewhat low, but after they called UCSF, they said it was fine and he's clear to start more treatment.

Nancy arrives Sunday night and will stay with dad all week while Becky is back at work in Santa Maria and starting to prepare for her move up here.  Craig and Doug should also be showing up around Thursday sometime to stay for the weekend. Then, Dad heads back to UCSF sometime the next week for another 36 hour drip. After that he goes back to the two longer stays at 3 to 4 weeks each.

Jen

Thursday, August 19, 2010

Dad's home from the hospital and recuperating from surgery. He did go to the Feather River clinic today to try to have his ears cleaned out. He's been having a hard time with some stubborn wax buildup that he just can't get rid of. It's been causing him quite a bit of grief. They got a lot of it, but not all.

He has a follow up appointment with Feather River for his surgery on Tuesday, and then UCSF wants him back on Wednesday. It's great that he gets to stay home for awhile to try to get some energy up before he has to go back for another 3-5 treatment. At UCSF they will be giving him a 36 hour drip, then watching him for a bit before they release him home for another week. We're expecting he'll be released on Saturday or Sunday, and I'll go down and pick him up.

Nancy had plans to come out this Wednesday when we had anticipated he'd be home, but due to the unexpected gall bladder surgery, he'll be in the hospital for the entire time she's here. Luckily, Southwest airlines only charged her $19 to change her tickets to the following Sunday through Friday! This way, she can stay with dad while he's at home while Becky works an extra week. Then, Craig and Doug might be driving out for the weekend.

In other fabulous news, Becky applied for a transfer to the Red Bluff office to be closer to dad, and got an interview on Monday morning. (She's been waiting for this job to open up for years!) They called her back today and told her she got the job! Woohoo! Congrats Becky!

Jen

Wednesday, August 18, 2010

Dad's getting released from Feather River today! Yippee! They took his drain out, and are just waiting to have the needles taken out from the IV and he should be heading home. 

He has been eating a little bit and is on oral painkillers and antibiotics. His blood values are coming up as they should, so things are getting a bit better.

Becky will call UCSF tomorrow to see when they want him back. Hopefully not for a couple of days, he needs to be at home and relax a bit before starting anymore procedures!

Jen

Tuesday, August 17, 2010

I just saw Dad today at Feather River Hospital. He's doing o.k., but seems to be in quite a bit of pain from the gall bladder surgery. He's on pain meds every couple of hours but hopefully the pain will lessen by tomorrow. 

He's been walking the halls which should also help with some of the pain, but just getting out of bed really hurts the abdominal muscles. So does laughing. I didn't do it on purpose, he started it - but it did seem to hurt quite a bit! Why he kept trying to gross me out I don't know...

Anyway, he could be released as early as tomorrow. They want him to start solid food and have that for 24 hours which he just started at lunch today as I was leaving.

He's in a double room which is not the most comfortable, but his roommate is a nice enough guy.

I'll have another update tomorrow when we know if he'll be released or not.

Oh - and here's a great link to send Dad a "cheer card" while he's at Feather River. He's in Room 295.
http://frhosp.netreturns.biz/CheerCards/

Jen

Monday, August 16, 2010

So Dad was scheduled to have his Gall Bladder removed today at 12:00 p.m. They were hoping to do it all laproscopically, but depending on how it goes, they might have to cut him open and/or place a drain. Becky will call me after the surgery to let me know how it went and what his recovery time will be.

His blood counts went up a bit after his transfusion yesterday, but his liver values were a bit off - a side effect of the malfunctioning gall bladder. The liver values were better today, so they felt he was safe to have the surgery. After they remove his gall bladder, his blood counts should bounce back to healthier levels. 

UPDATE: Out of surgery, they were able to do it all laproscopically, and it went great. The surgeon even showed Becky pictures of the before and after!


Jen

Saturday, August 14, 2010

I saw Dad last night and brought him dinner which he loved - Chicken Bundles with gravy and Cherry Turnovers - yum! He was in a great mood and seemed to have a near normal amount of energy. He did start to wear down pretty fast around 9 p.m., but heck, so do I! 

He has lost a bit more weight and is down to 204 - over a 65 lb. weightloss from a couple months ago. His pants are falling off, and his skin is fighting a good fight trying to tighten up after such a rapid loss. His hair has all fallen out except his eyebrows (I told him I'd draw them in if they fell out - so I think he's kept them out of sheer willpower!) and arms. I'm curious to see how his hair grows back in, some people get more hair, or it goes curly, or turns red, or some other strange thing. I have my fingers crossed for just such a thing - a head of thick, curly, red hair. Who's with me?

Anyway, everything seemed great UNTIL I got a call from Becky today. Looks like he was up vomiting around midnight and was told by UCSF to go to the ER. (NO, it wasn't my cooking!) So, off they went. Turns out he has Gall Stones that need to be removed. They diagnosed this 2 months ago at Feather River, but I think the Leukemia diagnosis orvershadowed that and they were pretty much forgotten about and never dealt with.

He had an ultrasound today and is waiting on talking to a Dr. about what that showed. I'm guessing they won't do surgery until tomorrow or, most likely, Monday. Until then, he's on morphine to help with the pain, a liquid diet, and more blood transfusions to get his low platelet count back up. I'm not sure how long he'll be in there, or how that affects the schedule for chemo at UCSF. 

Here's a website for some info on Gallstones: http://digestive.niddk.nih.gov/ddiseases/pubs/gallstones/

Jen

Friday, August 13, 2010

Dad made it home from the hospital last night and should be at home for at least 7 days before he needs to go back for another 3 to 5 day stay. He'll call the hospital on Thursday, the 19th to see if there is a bed available. On his next hospital stay he gets a 36 hour drip of chemo then home for about 7 days, then go back and do it again.

He's feeling a bit yucky, can't remember very much, gets tired and agitated kinda easy, but still seems to maintain his sense of humor when he has the energy. He has some sort of ear infection going on that's driving him crazy but they're going to try to get something today to help alleviate some of it.

I'll be heading up to his house tonight to bring him dinner so I'll get to see him and really see how he's doing. Hopefully Craig, Nancy and Doug will be able to come out in 2 weeks to see him when he's on one of his home stays.  He prefers visitors at home and not at the hospital. Too small of a room, not enough privacy, nurses in/out, etc. 


I'll be seeing him several times over this next week, so I'll have some better updates. Hard to get a good idea of how he's doing with short phone calls to him and Becky!

Jen

Tuesday, August 10, 2010

I just talked to Becky and it looks like he'll be getting released and heading home this Thursday. He should be home for about 10 days before he starts the next cycle which should be the 4 days in, 10 days out.

He moved down to the 9th floor today from the 14th and I think that threw him for a loop. He's doing o.k., but feeling a bit down about things. I think that's probably normal considering what he's going through. He seems to have great days and then really crappy ones depending on how he feels and what he's thinking about. He's sleeping a lot which Becky said is caused by his white blood counts coming back up and wiping him out. Hopefully he'll start feeling a lot better when he gets back home and settled in.

I'll see him this weekend and I'll get a better idea of how he's doing. I'll try to send an update in a more timely fashion next time. :)

Jen

Saturday, July 24, 2010

I've talked to Dad everyday, sometimes briefly, but here's the latest:

Liver is fine. Blood clot in his arm is getting better. He has the flu.

He got the port put in his chest a couple of days ago and they started chemo the same day. Tomorrow will be day 4 of chemo, then he should get a little break. The day the put the port in his chest, he was getting his slippers under the bed, stood up, and passed out. When he fell, he smacked his head pretty good and woke up on the floor of his room, a bit confused. He's fine, but he was really dizzy for a couple of days, partly due to being sick, and partly due to one of the drugs they're giving him, Vincristine.

He says the dizziness is getting better, but he's really, really tired. When I talk to him, he's sounding like he did last time, with the really deep voice, a little slurry, and lethargic. He doesn't talk long, and wants to go back to sleep. I'm hoping he starts to feel a little better soon, he sounds a tad miserable. :(

I might try to get a sitter for the kids this week so I can go see him for a day or two and talk to the nurses and doctors myself. I don't like feeling out of the loop, and with Becky back at work, we don't get to drill the nurses and doctors for answers, and we're not there to make sure he doesn't fall!!!

Jen

Monday, July 19, 2010

Dad went back to UCSF on Sunday after 2 weeks at home. While at home he was feeling quite awful for the majority of it, but started to feel much better near the end. He did get a blood clot a couple of days ago in his left arm below the spot where the PIC line was, but that's somewhat normal, and he's on blood thinners to break down the clot which is working, albeit slowly. It sounds like he's got a cold and has some chest congestion that he needs to get rid of, but that shouldn't be a problem either.

They did a bone marrow biopsy today and it came back looking pretty good. Still no cancer which is great, but they were hoping for an increase of something (Dad couldn't remember what it was called) and they didn't see that, but it's still fine. He seems to be having a bit of trouble with his liver, but that is also just a common side effect of all the chemo and that should be fine too.

His blood work didn't look very good at all, all the values were very low, and he somehow went neutropenic in the last two weeks. They are giving him another blood transfusion to bring some of his values up, and hopefully the rest will go up once his liver is functioning properly.

They won't be giving him any more chemo for a least a couple of days until he gets some of these issues resolved, so we're not sure how long he'll be in the hospital this time. The original plan was 3 weeks, but they might switch it up and do a short 5 day course instead. We should know more in a couple of days. The doctors aren't worried at all about the setbacks, they say it's to be expected with the type and amount of chemo that's he's been getting.

His cell phone isn't working very well in his room, so if he doesn't answer, just leave a message and once he takes a walk he can get reception and call you back.

I'll send another update in a couple of days when we know more!

Jen

Wednesday, June 30, 2010

So, looks like Dad is doing great! His last bone marrow biopsy showed some cancer cells still hanging around, so he got another dose of chemo and will have another on Monday. But, his blood counts are bouncing back really fast! He's had a couple of shots of Neupagen which is helping restore those white cells the chemo obliterated. And, he's no longer neutropenic which is great. No more strict conditions on his food and activities.

He talked to Dr. Martin this week who is the head Leukemia doctor there, and said that he should be able to go home early next week! He will get a week or more at home where he'll be a bit more tired than his normal self, but still able to do pretty much whatever he wants as long as it's not strenuous (this means NO work of any kind). He mentioned to me today that he'll be back to UCSF on the 15th which gives him about 10 days at home before returning for another 3 weeks of treatments.

His weight is hanging around at 217, so no more rapid weight loss which is good, but bums him out, he was hoping for a miracle diet!!

His attitude is greatly improved. He even started calling himself P.L.C.P. or, Poor Little Cancer Patient and Chemo-Sabe. At least he still has a sense of humor! See the attached pictures of his new shirt for proof.

Jen

Friday, June 25, 2010

Dad's bloodcounts have dropped to next to nothing as expected. He has virtually no white cells left and his platelets are low. They gave him platelets yesterday and they keep his red cells up to a decent level with transfusions as needed. They take blood samples daily to keep on top of his counts and give him what he needs.

As of yesterday, his weight was down to 217 from 270 a month or two ago. Becky thinks he looks skinny, but she sees him everyday. I think he just looks like dad at his normal weight. I don't think anyone else would think much of his weight loss, but too much more and he might start looking thin... I think he's started losing some hair, but since we shaved his head it's a bit harder to tell. I won't see him until he gets home since I have another head cold and I'll be out of town next weekend. I'm not looking forward to seeing him without eyebrows. That's always the telltale cancer patient sign, and it's yucky looking. I might bring an eyebrow pencil and draw them in for him!

Great news - his spinal fluid came back clear of cancer which is great. He'll still get 5 more lumbar punctures with chemo to ensure it stays that way. He has gotten a nasty spinal headache that hurts every time he stands up. That's from the spinal fluid leaking out where they punctured him. It takes days to weeks for that to heal and the headache to go away. By that time, he'll have another puncture. Not great, but he takes pain meds when he needs to. Also, the Philadelphia chromosome test came back NEGATIVE! Yippee! This greatly reduces any need for a bone marrow transplant.

He'll be getting another bone marrow biopsy today which should tell them if the treatments are working and if he's in remission. Not everyone is by this point, but they should see a drastic reduction in the cancer cells. The results of that are usually in the same day I think, so we should have another update soon.

Jen

Sunday, June 20, 2010

Sorry I haven't sent an update this week, but it's been very uneventful. He finished his first 4 days of chemo and had his first of 6 lumbar punctures. Today, he will receive another dose of chemo and then he won't have anything this week until Friday when they do another bone marrow biopsy. We're hoping that this biopsy shows he is in remission, but only about a third of people are at this point. If he is not, he gets another dose of chemo. The preliminary results from the lumbar puncture show no cancer in his spinal fluid, but the final results should be in tomorrow.

His blood counts are steadily dropping and he should be neutropenic by tomorrow. (This is where he's super susceptible to infection and is kinda quarantined here in the hospital.)

We also got a written schedule of the chemo treatments. At least he knows what's coming up and how long he'll be here each time. It's a loose, generic schedule but it gives good information on the type of drugs he'll be taking and how long each session lasts.

He's had a hard time adjusting to his new life here, and was downright miserable and surly this morning. He's bored and a bit depressed and just wants out. He's determined to stay, but not by much. The only saving grace this morning was the Fathers Day card I gave him from Vicki. She wrote a very nice letter inside, and it was EXACTLY what he needed to hear today. It was amazing. He cried, then made me read it out loud and I cried too. Since then, he's been quite a bit better. I left the card by his bedside so he can read it when he gets down. (Thanks, Vic, sometimes, you know just the right thing to say at just the right time. I was having a hard time coping this morning and couldn't seem to say what he needed to hear, but you hit it. I really appreciate it. So does dad.)

I'm leaving this afternoon to head home to spend some time with Jason on Fathers Day and Becky won't be back until late tomorrow afternoon, so I'm hoping he handles his alone time well.

Please don't forget to call him today to wish him a Happy Fathers Day. He really likes to hear from everybody. He told me to let people know they can call anytime, he always has his phone near him and he's got plenty of time to talk. If he's busy, he won't answer and he'll call you back. But, the more people who call, the better. Just let him know you're thinking of him and wishing him the best. He's going to have a really boring, depressing week, so please call, it really will brighten his days.

Jen

Sunday, June 13, 2010

Dr. Martin was just here and gave us a TON of information. Here's more details than you possibly need, but I typed furiously as he spoke, so I think I got it all.

Diagnosis: ALL (Acute Lymphocytic Leukemia)

The treatments are sporadic, so I'll explain. There are 3 different schedules (I, II, III below) consisting of a total of 7 months (A,B,C are each a month long).

I     A, B, C
II    A, B, C
III           C

A and B cycles: 3 1/2 weeks in hospital
C cycles: 4 days in 10 days out, 4 days in 10 days out.

We are currently in schedule I A.

He will be in the hospital for a total of about 4 1/2 out of 7 months. All here at UCSF.

The actual treatment/drugs are as follows (this is very confusing and I'm sure I spelled them all wrong, so bear with me with the scattered thoughts)

Initial Therapy: 3 medicines on days 1, 2, 3, 4, 8, 15, 22
Dexzamethysone, (steroid) starts today for the next 4 days which should help with the bone pain and reduce his need for pain meds (side effects: water weight, abnormal energy, lack of sleep, with a crash on 5th day where he'll feel tired
Vinchristine (via IV) weekly for 4 weeks (side effects: tingling in fingers/toes and constipation)
Dinarubicin knocks off cells that grow fast and starts tomorrow for 3 days after echocardiogram (side effects: can effect the way heart pumps)

Those will put him into "remission" by the end of his stay this month. Today is day 1, he'll be done by day 28, and back here for the next round by day 35.

2 weeks from tomorrow another bone marrow biopsy will be done to see if the cancer cleared out. They don't want to see ANY cancer with that biopsy.

He will be on a maintenance therapy after the 7 months of treatment which will be a daily regimen of pills which will end at about the 2 1/2 year mark.

ALL tends to hide in the spinal fluid / brain stem so he will need lumbar punctures six times over the next 3 months and chemo pumped directly into the spinal fluid. First spinal will be this week.

This plan can change depending on the results and how he handles chemo. There will also be a chromosome test to tell if he has the Philadelphia chromosome (50% chance) which will change things and will need a possible bone marrow transplant if he has it. The best donors are his siblings who have the same mother/father. If he does in fact need a bone marrow transplant, it is very uneventful. A donor gives blood and it goes into a drip line in his PICC line. It's that easy. No surgeries, no hospitalization. A transplant comes with it's own side effects/issues which I'll explain if it comes down to it.

Other issues are his blood counts. There are 4 different levels they look for (WBC, ANC, RBC, PLT) and when certain numbers drop, they have to either give him blood transfusions (RBC) or platelets (PLT). When his ANC numbers drop he goes into a state called "neutropenic" which means he has little to no white cells left (this will happen in the first couple of days after starting chemo). This is when things get a little more serious as he is very susceptible to infection. He will no longer be able to eat any outside foods and anyone who is sick must stay away. They can give him shots of Neupagen which can help booster his white cell count to help fight off infection.

I think that's all the information that I have at this time. Any questions??? Hit me while I'm hot and I can remember!

Jen

Saturday, June 12, 2010 #2

Dr. just left a bit ago, here's what he had to say:

We'll get the final diagnosis tonight or tomorrow morning, but he's thinking ALL, not AML. The chemo treatments are very different, but he was 99% sure that chemo will start tomorrow.

Dad needs to go into remission before he leaves, but most patients (90%) go into "remission" before they leave. They consider remission to be a lowering of the cancer cells, not a total removal. A total removal off all cancer is considered cured, and with ALL there is a 90% chance of being cured, and with AML there is a 75-80% chance.

If it is ALL, he will need 7-8 more months of treatment after leaving here, and with AML he will need 6 months more treatment. Follow up treatments will be here at UCSF and he will be admitted each time. Details of follow up visits will be determined tomorrow.

They will also be doing a chromosome test that comes back in 2 weeks, and I can't remember why they're doing this, or the echo cardiogram of his heart, but I'm assuming it's really just for more information for chemo.

He will be here at UCSF for the next month, and depending on the type of leukemia he has, it will either be a lot up front and then recovery for the rest of the time (AML), or ALL which spreads it out during the month.

The Dr. should be back tomorrow afternoon with all the rest of the answers.

If you have any questions you want me to ask the nice Dr. - now would be the time! We don't get to see this head guy very often, so I'd like to get as many answers now as we can.

Oh, and there is free WiFi here in the hospital, so feel free to send me emails. Becky will hopefully be bringing a laptop for dad to use too, and maybe we can grab his Skype camera so we he can talk to those who have it.

Jen

Saturday, June 12, 2010

He is still in lots of pain, and is very anxious to get the chemo started. We just need to wait for the Dr. to say which kind and if there will be more tests needed before he starts. Some of the chemos require additional tests on the heart and other organs to make sure his body can handle it, but we won't know until the Dr. gets here.

So, now we're waiting. He's in good spirits, lethargic, slurs a bit, and keeps dozing off in the middle of conversations, but it's quite funny. He just asked me to lay with him and promptly fell asleep, then woke up and said, 'Beechwood in 93, we had a lot of turkey burgers, remember that? We got them from...' and then fell asleep. I have no idea why he was talking about that, but apparently it was important at the time.

He also will stop, look at us and say, 'I love dilaudid.'

He's got a great nurse today, Elaine, who just brought him Oxycodone with a Miralax chaser, and she sang the diarrhea song, complete with 'when you're sliding into third and you feel a juicy turd, diarrhea, diarrhea'. She's awesome. Too bad it's her last day! He loves her.

Dr's. here. Gotta go!

Jen

Friday, June 11, 2010

I went to see Dad today before they transferred him down to UCSF (He should be there around 9 p.m. or so). He is in good spirits and was actually quite his normal self, and he has every belief that the Dr.'s at UCSF will be able to work their magic and get him home in the next month, Leukemia free. They said he's very healthy otherwise and has a great chance to beat this being so "young" and healthy. His blood pressure was even in the healthy range the whole time! Impressive considering the situation and the news he just received.

He was really pale and anemic, but they were giving him a blood transfusion and he was starting to get some color back in his face. They have him on some good painkillers that are taking away a lot of the muscle/bone pain that he's been having for months. He was really weak, but was able to get up and use the bathroom by himself and change into his regular clothes before the ambulance arrived to transport him to the hospital.

Here's a website I found with some good information on his type of leukemia. It is Acute Aggressive Leukemia, and it sounds like he has AML only due to the age considerations, but I'll find out for sure. Although it is aggressive, it is a curable variety which is great news. I'm not sure of the treatment plan either except they are starting chemotherapy tonight and he should be there for a month. I'm not sure if that's it, or if he'll have some sort of followup treatments. Once again, I'll find out the details from someone with an M.D. behind their name!

http://www.canceranswers.com/Acute.Leukemia.html

(Craig might be able to send out some better links.)

Here's his info at UCSF:

Unit 11 Long

RM 1153

(415) 353-1383 begin_of_the_skype_highlighting              (415) 353-1383      end_of_the_skype_highlighting (nurses station on his floor)

His cell #: 530-591-3416 begin_of_the_skype_highlighting              530-591-3416      end_of_the_skype_highlighting

Becky's cell #: 805-598-0730 begin_of_the_skype_highlighting              805-598-0730      end_of_the_skype_highlighting

I'll be heading down tomorrow to see him and probably every weekend. I'll send updates after each visit to let you know how he's doing.

Jen