Day After Thanksgiving. . .

Dad's doing pretty darn well for all of the activity the past few days.  Lots of family visiting, a lot of small kids running around, and quite a Nebraska game!  He's knocking off items on "Roger's List" to do pretty much without too much prompting.  He had PT today, and they will make the determination next week on discharging him from home health.

By the looks of him (see above) he looks great!  Still a bit weak and needs to rebuild some muscle mass, but overall the ritalin is still working!

Kari and the boys came out today; and Dad was finally able to talk with Eric (our dear friend that was hit by a car a few weeks ago as he was walking to the car after he finished a half-marathon in Dallas).  I think it was good for both of them to connect and share some war stories of pain meds, physical therapy appointments, and the importance of family!

GO BIG RED!

"Roger's Morning List" has been created

Dad's sense of time still seems to be pretty off-kilter. His "I'll do that in just a minute" turns into a few hours. So I've solved that, or attempting to solve it, with "Roger's Morning List." This piece of paper consists of things he needs to do on his own, without prompting by Mom or me. On the list includes things like making the bed, showering/shaving, physical therapy exercises, and taking his pills from Mom with a smile. There's a big box next to the item for him to check off, and there is one list per day. I printed off a week's worth, so hopefully some sort of routine can be established before I leave for Portland next Tuesday.

I can almost guarantee there will be family fighting on Friday during the Nebraska game. Dad got a wonderful homemade fleece blanket from his sister, Cathy, today and it is unbelievably soft and warm. Fighting to be in possession of the blanket and under it during the game will definitely happen. Mark my words. Goodies from the gift basket from my co-workers at Intel (greatest team to work with EVER!) will be used as bait to try and get the person with the blanket to leave it alone just for a few seconds. That's all it will take. Possession is 90% of the law, right?

Not much change the past couple of days; he's definitely awake more, but still walking a bit hunched over, still struggling to find words sometimes, and definitely gets worn out after just the slightest bit of activity. He did take a nap today, and he said he felt bad about doing so but he really wanted to have one. I told him that's not so unusual, and that I would have LOVED to take a nap today had the time been in my favor. Alas, it was not with Thanksgiving prep, work, and an airport run to pick up Mike and Cindy!

For those that are anxious to talk to Dad on the phone, he is talking now and can handle the conversations pretty well. One thing that I'd like to request is keeping the talking about the last month, or even his treatments/health to a minimum. He's really focused on it right now, and we're not sure it's all good to be in a constant state of thinking/talking about what's just happened. A short conversation about it and how he's doing today mixed with talk of grandkids, retirement, the weather, as well as things going on in YOUR lives are especially important. If you need a topic, I'd be happy to provide several. Just send me a note. :)

I've seen some mis-information going out via email from Dad, so to clarify: the first scan done in late October was just a baseline scan, but it was "good" news in that no change to the tumor in a negative way was going on, and that we will follow up in three months (end of January) for another scan. That one will be a bit more telling, as the radiation will have had more of a chance to work, he would have been through one full 6 week dose of chemo, as well as four monthly maintenance doses of chemo (each done for five days, one week a month). Until then, it's focused on getting his strength back, keeping him engaged in day-to-day, and getting back to "normal." He starts his next dose of monthly chemo on Monday, December 1st.

Hope everyone has a very happy thanksgiving!!! The Dillon's will be eating off of normal dinner plates this year instead of china (the HORROR!) to save some time in the kitchen and reduce the work of hand-washing all the dishes, but 17 family members will be in the house Thursday and we'll all be very thankful that we could all be together for the holidays.

Happy Thanksgiving!

Weekend was a bit slower than anticipated

Well, the PT on Friday really kind of threw Dad for a loop.  We think he overdid it a tad on the treadmill, and it just took a bit out of him this entire weekend.  He is still definitely better, but wasn't exactly bouncing around, running errands as we thought he would be.  Saturday evening he spent some time with the grandkids, and wrapped up the evening by just reading a book to Sam. I think they both really enjoyed that quiet moment together.  He went to bed pretty early Saturday, but is looking good.  He was up for a few rounds of visitors on Sunday, with some of the neighbors stopping by for some hot tea and conversation.  

Instead of getting on the treadmill, I told Dad on Sunday that his PT would be running the vacuum as we prepare for Thanksgiving at the Dillon house.  He argued that he "just did that."  Of course, to him it felt like just a few days ago; in reality, it was almost seven weeks ago that he last was driving a vacuum.    He did well, but it wiped him out and resulted in a well-deserved nap.

Today (actually for a while now) he is having some nausea and rolling stomach, so he cancelled PT for the day and is taking it easy.  Ritalin is still helping him stay up and be more alert, and we're still figuring out what dose and when to give it to him to be most effective.

Overall still positive.  I did get a call on Friday from our doctor friend of the family out in California (he's the one that suggested stimulants to begin with).  He said that there were at least four other stimulants to try if for any reason Ritalin stopped being effective.  That's always nice to hear there is a back up!  I also picked up the book  "Awakenings" on his suggestion.  I guess there is a lot more in the book (surprise!) than what was shown in the movie, and that I likely would get quite a bit out of reading it now after the latest experience with Dad.  Amazon.com loves me this season.

PT gets the last laugh. . .Dad's going to bed

All of the day's activities are catching up, and Dad is WIPED out.  It's 7:00PM, and he's heading to bed for the night.  Tomorrow we're going to shift around the Ritalin prescription a bit to see if we can't keep him up a bit and balanced a bit more, but overall a great day!

Dad is starting to show off for the physical therapist

First of all, Dad was awake this morning at around 8:00AM, and was awake through about 2:45 with just a wee bit of a snooze in the chair while waiting for the PT to show.  That's a first in months.  He was on the computer this morning, starting to dig into some of the mail from the past month, and just following up on things that he would have done on a normal day-to-day basis.  I went to grab lunch, and when I left, he was on the computer.  Unbelievably great to see!

Physical therapy was here when I got back, and when they came upstairs, she was shaking her head at how well he was doing after being in bed for six weeks.  He was able to get through 10 minutes on the treadmill (2.0 mph/6% grade) and five mins on the stationary bike and wasn't really out of breath at all.  He's REALLY tired now (and is now sleeping), but did a really good job.  

The trend continues - even out to dinner tonight

If you see any of the Dillon family wearing shirts provided by the pharmaceutical company that makes Ritalin, there's a reason.  Dad continues to get better and more alert with each day.  Today he was up a good part of the day.  We had a two hour appointment with the neuropsychiatrist, and he was as fascinated by the case as we were, which helps!  He was also remarked that it's extremely rare to have his office full of family members (all of us were there) and not have to referee a shouting match.  :)

On the way home from the appointment, Dad remarked that he'd like to have dinner out with the entire family tonight; which can mean only one thing: Zio's Pizza.  We got home, he took about an hour nap while I got caught up on work a bit, and then went down to Zio's where we all really enjoyed dinner.  The kids were super excited to see Grandpa, and we even went over to the Huff's so that Grandpa could rock Sam to sleep tonight - something he hasn't done for a few months.

Rich remarked sitting on the couch tonight: "Roger, it's good to have you awake."  Amazing what you can take for granted when life is going on as normal.  Start to appreciate the little things, like going out to eat or just sitting on the couch together, quite a bit.  

As I write this, it's 9:30PM and Dad is still awake, although getting close to being ready to go to bed.  PT tomorrow, and Dad's anxious to start getting back to being active and getting some strength back.  Doctor today said that it could be in part due to his being in bed for six weeks that he's so tired; but could also potentially be the temporal lobe of his brain sending the wrong message that he's exhausted, when physically he's just getting started.  We will continue to adjust medications and get him physical therapy until he yells, "Uncle!"

Overall, though, in just five days, a HUGE difference!!!

A little better each day, even went on an errand today!

Well, things just keep getting a little bit better each day.  Today Uncle Steve came up to winterize the mowers, and Dad actually went to the auto parts store to get the oil and filters with him.  He kept up for about 20 minutes  after getting back from the store, watching Steve working in the garage, even telling him how to change the oil in the riding mower at one point, and then he was completely worn out.  Being in the sunshine and outside, even for a short amount of time, took a lot out of him.  He took a hard nap all afternoon, and was a bit strained tonight, but overall doing really well.  He even spent some time on the phone tonight with Grandma and Uncle Mike, as well as wondering out loud why doing "nothing" all day makes him so tired.  I don't think he quite grasps that he's been in bed for about six weeks, with very little activity, and that it's going to take some time to build him back up.

Appetite seems to be in full swing, and is going through peanut M&M's just like old times (the bowl was empty tonight, which may explain why he wasn't too hungry for dinner).  Definitely can see progress, but quite a ways to go to build up his strength and cognition.

Tomorrow we go see the neuropsychiatrist at Creighton.  Not expecting to learn a whole lot tomorrow, but hoping he can help shed more light on what's going on, what else we can do, and provide a bit more of an assessment/evaluation of where Dad is, and how to get him back to where he was a couple months ago.

We did hear back from Mayo's, and right now I think we'll try to see how far he recovers on the stimulants (ritalin) before taking him up there.  The neurologist at Mayo's indicated he'd be happy to see Dad again anytime that we wanted to come up to Rochester, MN, if we felt that the doctors in Omaha weren't able to help further.  While we definitely felt that last week, I'm not sure it's as urgent that we get him to Minnesota right now.  One day at a time.

Physical Therapy resulted in a long nap; but still better today

Dad continued to show signs of being a bit better today, although still very foggy.  For the first day in weeks, he knew the year, month, and a pretty good guess on the date.  Physical therapy was out this afternoon (after the home health nurse this AM) and just some simple exercises really exhausted him.  He was able to do all of the movements, however, and following commands without questioning, so that's all good.

He's now taking a well-deserved nap after the activity this afternoon.  Next PT is Friday, but we're going to have him doing the exercises through the week to continue to build him up and get him back into the activity levels that he likes to have.

To hear his voice this afternoon, you would have thought he was completely better; while he's not quite there (not by a long shot), he's definitely a 1000% better than when I landed last week.  Maybe by next week at this time he will start asking to use the phone more.  Just a word of warning - he's still not making complete sense and is confused on a lot of what's happened, but I know he's starting to feel more social, which is good for all of us!

Thursday is the trip to see the neuropsychiatrist for further/deeper evaluation on his cognitive status.  Other than that, he's been a bit cold in the house, so the heat has been above 70 degrees for the first time in my lifetime.  Growing up, anything above 65 got a stern frown and a suggestion to get a sweater. :)

An "awakening" of sorts

We've had an "awakenings" of sorts in the past 18 hours, likely due to the addition of Ritalin and further reduction in his steroid intake.  Much more awake (only sleeping 19+ hrs instead of 24hrs/day).  However, he's still pretty confused -- it's like he's had a stroke the way he's trying to find the words to speak or questions he wants to ask.  Better, however, than 24hrs ago.  We'll take it.  Yesterday afternoon we didn't know what to think, so to have a turnaround this quickly was not expected. 

We need to get through this week (where we'll likely see the peak in improvement with the new medication per his internal medicine doctor this AM), and get him to start drinking fluids all the time.  Apparently damage to the hypothalamus and that part of the brain can impact his body's signal to drink more.  Dehydration is settling in, so some aggressive family prodding to drink is now in play at the Dillon house to get his blood pressure back up and heart rate down.  He has physical therapy coming out to start on his return to strength program. 

Also got him a quick haircut at the local walk-in salon on the way home from the doctor's office (I'm so thankful that I didn't have to follow up on my threat of using the clippers here at home; that could have been disastrous), so he's looking better today.  He's also not fighting us so much on eating.  He even picked up the Sunday paper as I was cleaning up the lunch dishes just now. . .not that he really read anything, but the desire to do something other than hold his head and go back to bed is an incredibly welcome sign.  Of course he's on his way for a nap now, but a positive past couple of hours.

Still waiting on feedback from Mayo's via the docs in Omaha, but I think if he's doing better on the Ritalin we're going to wait to head up to Minnesota for a few weeks. That trip would be really hard on him right now if we don't absolutely need to go.  I'm going to try and talk to our neurologist up there yet this week, however.  It's starting to look more and more like radiation damage causing all of this, and so we have some questions on how to determine if it's temporary or permanent.

A bit more awake, but still very confused

While Dad seems a bit more awake today, he's really having problems getting across what he wants to tell us.  He's having a hard time with some word association and asking questions in some areas; but then can sound as lucid as can be when he's saying goodnight to the grandkids.  If a stroke hadn't been ruled out already with MRI's, that's what I'd be asking to be investigated next.  A lot of repeat questions (like he didn't understand or hear the first time you answered him).

We had home health out for an evaluation today.  Pretty low blood pressure (90/62), so we're going to monitor that through tomorrow before we go in for an appointment on Monday.  We also got referred to a speech therapist and physical therapist today, all of which will be descending upon the house early next week.

Four doses of Ritalin are done, without too much impact other than a bit more awake.  He's still ready to go to bed almost immediately after coming out to eat, but he IS coming out to the kitchen to eat.  We likely will increase the dosage slowly over the next few days to see if that is going to help him.

Tomorrow if it gets above freezing I'm going to learn how to run the mower for one last cut before the official start of winter.  Pond has a layer of ice on it today, so it's definitely cold out here in Nebraska.  

Ritalin: Not just for ADHD kids anymore

We saw the psychiatrist this morning.  She thinks there is radiation damage (perhaps) to the Raphe nucleus, which interacts with almost every pertinent portion of the brain (per wikipedia).  With the tumor location near the Hippocampus (which is right next to the Raphe nucleus), it shows that it can impact mood, memory processing, sleep and cognition.

She's prescribed ritalin to act as a stimulant, and we should see some improvement in the next few days if that's what is going on.  He was up almost three hours today with the appoinment and getting around to go, so he was exhausted this afternoon.  Tonight at dinner he was more "alert" but REALLY confused and having a hard time getting across what he was trying to ask.  

We finally heard from Mayo's as well - more on Monday as he was going to talk to the radiation oncologist this afternoon.  The doctor had been traveling and not getting his messages (or something along those lines).

It's 7:15 and Dad is more than ready for bed.  He had a good dinner, though, and cracked a huge smile when I told him it was his turn to do the dishes.  I told him if he was going to be in shape by Thanksgiving, he needed to start tonight with training.  :)

Dad seemed better tonight

We don't know why, but Dad had a pretty good night tonight.  He came out for dinner.  Ate quite a bit (including a two-course dessert of cookies, ice cream x 2, grapes and strawberries).  And even stayed up while the grandkids came out.  He was up a total of about an hour, but was with it enough to talk to the kids and enjoy the private concert by his Grandson Dillon.  We sounded the alarm when he seemed better, so Tracy and Rich and the kids were able to interact with him on a "good" night.

He even half-laughed tonight after making  a joke about not wanting to talk to Uncle Mike; which was monumental.  I haven't seen him crack a smile in a week.  MUCH needed boost for us all, although no one knows why he seemed better tonight.  He even showered and shaved today, so he looks better as well.

Tomorrow we see the psychiatrist - hoping that there are some medical reasons for his lack of energy/motivation.  Will post another one tomorrow once we know more (hopefully we will know more).  We're still waiting on news from Mayo's -- frustrating to say the least, but we're ready to go at a moment's notice.

We don't know yet what tomorrow will bring, but tonight he did seem a little bit better.  

In the mean time, we're using the debit card to makeover the office: new chair, new photos (to replace the ones from 2002), and some organization.  Let's just say that the recycling bin is full for tomorrow with all of the catalogs from the past few years.

Hurry up and wait

Well, all of the records have been gathered and now we're just waiting on the next steps.  No update yet from Mayo's on possible windows of time we can get in up there.  I just talked with the appointment desk and of course just trying to make an appointment on our own puts us into December, so we sent another message to have the doctors coordinate with the Omaha medical crew and hope that we can get up there sooner than that.

Dad seems to be eating a bit better today, and actually sat in the living room to have a big breakfast (breaking every law in the house of eating anywhere but the kitchen).  He even wanted to call a friend of his to check in, which is a first in weeks.  Didn't last long, and he's back in bed, but a bit better than yesterday for a few minutes at a time.  We'll take it.

At this point, our next appointment is Friday with the psychiatrist unless we can get in somewhere earlier.  We're ready to leave for Mayo's at any time, but not sure yet when that will be.  In the mean time, we're getting an evaluation for physical therapy/nutrition and overall assessment soon.

I'll continue to update as I know more.

Gathering records

The process has started to gather records, scans, and get appointments set up for Dad to get to the Mayo Clinic.  Dr. Hsu is coordinating a plan before we leave, and will let us know timing and where to go upon landing or arriving in Rochester.  Date we leave is yet to be determined.

We also don't have the appointment with a psychiatrist until Friday (if we're in Omaha that long), so we're trying a few other avenues to try and get in somewhere else before we leave.  Got a good tip with the help from San Francisco to try Creighton, so Tracy is on the phone now trying to get us in there.

Home health care has been referred to come out for a nutritional evaluation, likely tomorrow.  Things are moving pretty quickly now.  Will keep you updated as we learn more.

Omaha is nearly out of ideas

Two of the doctors actually said today that they are out of ideas on what to try next.  Not exactly what we wanted to hear.  We are now in the process of evaluating whether to go to Mayo's up in Minnesota or MD Anderson in Houston.  

We did have a glimmer of good news last night when I was talking with John (who happens to be the brother-in-law of one of the premier neuropsychiatrists in the country).  He indicated that we should be evaluating Dad for low dopamine/stimulant levels and a full cognitive assessment to determine if the radiation damaged the brain sooner or more than previously thought.  This would cause very low energy levels, no motivation, tremors/shakes, and confusion.  We have an appointment tomorrow with a psychiatrist locally to get part of that evaluation done.

In the meantime, we're taking shifts playing the "mean" caregiver and forcing fluids and nutrition.  I scared Dad straight a bit tonight with the news that if he didn't start eating/drinking on his own, a home health care nurse would do it for him via an NG tube.  He told Mom upon going back to bed that tomorrow he was going to "hit it hard; walk more, drink and eat more, too."

He's pretty confused, and has no concept of time.  I asked him tonight what year it was, and he said, "Eighty-something?  I don't know."  Just before this though, he looked much improved for a few minutes and actually ran the electric shaver himself with me holding the mirror.  Glimmers of progress, but then it's short-lived.

I'm talking with the social worker tomorrow at the cancer center on next steps of getting to another location (Mayo's/MD Anderson) for more options on finding out what's going on.  If he can fly, we may see if we can get a flight arranged to get him there.

I'll keep you updated when I can. It's been pretty busy talking to the ensemble of doctors and health care workers (and a stint in the ER yesterday where all tests were normal!), but we're determined to find out what's going on.

Tracy brought Sam out tonight for a little visit/boost.  Sam was really happy to see Grandpa, and kept going back to the bedroom to "show Grandpa this shell with the ocean in it."  It did offer a boost for us all, I think.

Maybe a little better. . .?

The results of the MRI scan this week showed slight improvement over the one on 10/21/08.  The radiologist said that the contrast enhancement was slightly less conspicuous on both the right and left side.  There was no growth at all, no edema/bleeding, no sign of stroke, no new lesions. . .All great news.

What remains to be seen is what is causing this setback.  Possibly the steroids (they've since ramped back up on them, but it doesn't seem to be helping so it's time to wean him back off); possibly dehydration as well, as the headaches are worse with positional changes (upright or sitting makes them increase).

Talked to Mom tonight when I landed back in Portland, and she said he actually ate a meal in the kitchen tonight.  He went right back to bed afterwards, but this is progress.  I land in Omaha tomorrow night and will be staying for the month to help out.

We're still trying to find out what's going on. . .

We don't have better news today on Dad's progress.  If anything, he may be a little worse.  The doctors are feverishly working together to find out what's going on.  Dr. Silverberg and Dr. Hsu are pulling their weight to get an MRI sooner than Thursday; and depending on what the scan shows, we may try to go back up to Mayo's if Dad can tolerate the trip.  Mom said tonight via email that they may admit Dad again into the hospital as he's really not better, and getting weaker (he's not eating as well now, either).

We really don't know what's going on, and everyone is anxious to find out.  I'm flying back to Omaha Saturday and will be in town through November to help out Mom at the house and lend my support in getting Dad over this hump.  

Wish it was better news.  Keep the positive thoughts and prayers heading to Elkhorn; and I'll keep you posted on what we find out from the scan.

A few setbacks today

I'm relaying information from 19 time zones away, so I have limited information.  

Dad is getting a lot more confused and is really having a hard time even figuring out how to recline the seat in the car on the way to the doctor's office.  This morning he appeared to have a seizure, but after seeing the neurologist, they think it may just be the hot shower with some low blood pressure that caused a seizure-like few moments for him.  

The doctors are stumped right now on what's going on.  A few new symptoms have come to light, so they are doing a repeat MRI scan later this week (we're trying for sooner than Friday) and an EEG mid-week to determine if there has been any change to the tumor.  

I'm working on getting Dad back to Mayo's Clinic in Rochester next week if at all possible since we're not figuring this out, but Mom wants to wait for the MRI results to come in before making the trip up there.

I'll be heading home this weekend from Portland (after traveling in from New Zealand) and going to stick around there for a while.  Keep the positive thoughts flowing.  Dad isn't really checking email or on the phone right now, but I'm checking mail and I'll be keeping the blog up to date when I can.

Home from the hospital; still really tired

Well - the extreme fatigue finally landed Dad in the hospital for a few days while they tried to figure out what was the cause.  Dad got home this morning, but still is very tired.  He had critically low cortisol levels (which can contribute to the fatigue), and is doing a bit better but still a bit foggy and exhausted.  He's on a higher dose of steroids now, but will have to come back off them very slowly at some point in the near future.

I did talk with him via Skype (I'm in New Zealand at the moment) and he sounded pretty good.  He's not sleeping AS much, but we're still not to the bottom of what's going on.

The Huff's are coming out this weekend to do the winterizing of the yard/pond.  Dad just isn't up for much activity at all.  Hopefully that all changes soon!