Not doing so well today

Things are not going so well today. We've seen a pretty rapid decline in Dad the past few days -- becoming more and more sleepy, softspoken, and not engaging much in conversation. Today his blood pressure and ability to swallow have followed the downward trend.

The staff did get him up for a bath today, but his blood pressure dropping nearly stopped that activity. He settled back into a normal pressure once he was back in bed, but just now his blood pressure was 84/60. . .down from 126/74 earlier today. He hasn't really opened up his eyes since I've been up here, but I guess he kind of gave Mom a deep meaningless stare earlier when she walked in. Not really registering too much that she was here. He does know, and answers some questions and follows some commands, but overall just not doing well.

We're going to see if he can tolerate some soup for dinner on his own. We are encouraging folks to come up and visit sooner rather than later based on the past several days of decline. His Oncologist did say today that the chemo could really wipe him out, but this seems like more than just tired to us.

I'm now deciding if I'm leaving tomorrow morning for a few days or not. I'm checked in for my flight already, but need to see how things go. Probably will go, but then get to Portland, get things at home wrapped up, and then come back to Omaha for a while.

All settled in - Room 1508 at Brookestone

We got Dad all settled in. I had come up to sign a bunch of paperwork, and called Tracy to ask a question. . .only to find out that she was in Dad's room unpacking his clothes and getting him settled in. Neither of us realized that the other was about 100 away.

Dad has a nice room again - with a good view outside and big windows to bring in natural light. Right now that's seeing the gray clouds and winter weather, but it's a bright and comfortable room.

A lot of questions around next steps while he's here. He still needs to show progress for Medicare to pay for his care, so I've asked for the lead therapist to come down here to talk to us a bit more about just what that means and how they measure progress.

Visitors are welcome -- the best time to come up is around meal times (noonish, 5:00pm). Dad has a very weak voice and really making an effort to talk, but he likes to engage in short conversations. He's pretty worn out in the evenings by around 6:30 or 7PM, so if you can keep the visits to before then, that'd be great.

Off to Brookestone this morning

Dad wasn't as good yesterday - more tired, definitely much weaker voice. However, his appetite was still there as evidenced by how he nearly cleaned his plate last night.

They are moving him from the hospital back to Brookestone in about an hour. We're not quite sure what wing he will be in, but anticipate he'll be in 1:1 care in a less busy part of the facility.

More after we hear from the doctors and as Dad gets settled.

Is Grandpa still at the "get well" place?

Sweet little Grandson Sam asked if Grandpa was at the Get Well place.  Such a better term than a hospital or rehab facility, don't you think?

Dad seemed a bit more with it this evening after a slower start to the day.  He didn't seem to have any impact from the chemo, which is good.  Tonight when we were up there, he had a HUGE dinner -- so his appetite is definitely intact, and the weakness on the left side is definitely not impacting his ability to swallow.  His eyes were open more consistently, and seemed to engage in conversation more today.  His voice is still very weak and often hard to understand, but he's trying.  

Thanks to the coordination at the hospital, Dad is now getting his communion daily; and his friends Larry and Jack have assured Mom they can help Dad take care of that when he gets discharged back to Brookstone.  When Dad was trying to get us to call the minister back up for a second round of communion today, we had to remind him he had already seen them this morning.  He said, and we've been laughing about it, that he was "holier" than us. . .to which I said right back, "Knock off the holier than thou attitude, Roger."

When we left up at the hospital, Dad asked, "Are we all getting together tomorrow?"  

Yes, Dad.  Yes we are.  

First round of chemo complete

Tracy called and said that she had talked to the nurse, and that Dad was just finishing up his two hour dose of chemo. He tolerated it very well, and so far, so good.

I was able to get up there this afternoon after Tracy and the kids picked me up at the airport. Got up to the room, and noticed right away he had declined quite a bit in the month since I've seen him. Not a lot of energy, very soft-spoken, a bit pale, and definitely not moving his left side. He did enjoy a few bites of the Vic's Caramel Corn that I brought up (special request). He had a good dinner, and then the nurses were going to help clean him up and get him comfortable for the night.

It's good to be home. Grandma Max is staying up here with Mom and I this weekend, and despite the weather forecast, Emily and I are going in for pedicures this weekend as I promised her the last time I was home I would take her. I'm not about to break a promise to my four year old niece!

Mayo Clinic Neurologist confirmed that we're dealing with the tumor now

I can vouch for probably most in the family when I say that no matter how much you prepare for news you know is coming, it’s not nearly enough preparation for the moment that the news is delivered.

Not exactly the phone call we wanted to get from the Mayo Clinic – but it was one that didn’t come as much of a surprise. Our neurologist called this morning and he had the opportunity to review the MRI scans from earlier this week. He confirmed that what we’re seeing on the MRI is indeed aggressive tumor growth, and the reason why we’re seeing Dad decline like he is. The areas of concern are now that the tumor is “bleeding” – so not caused by trauma, but by rapid growth of the tumor in a delicate area of the brain where the blood vessels are very thin. He said that he agreed with starting him on the BCNU chemo (once every six weeks) to try and slow the growth of the tumor, and confirmed that BCNU may not be the most aggressive drug out there – but the one that Dad will tolerate the best. It won’t make him horribly sick or lose his hair – which would be insult to injury at this point. We don’t want him to be miserable, yet we want to try and do what we can to continue the fight where it makes sense.

The facts are not encouraging. This tumor may take him very quickly due to a hemorrhage in his brain as a result of more blood vessels breaking; or he may have good results with the chemo and slow down the progression over the course of several months. We likely won’t see much improvement in his physical state (walking, strength on the left side, keeping his eyes open) as a result of the chemo, but we don’t know.

While we’ve often thought of the day we would get this news over the past 18 months, actually hearing it is a different story. We’re not done fighting, but we seem to be losing the edge in the fight with the latest update. Thanks for all of your notes, phone calls, and support. We could not do this without you!

up to the chair this morning; unsure of Chemo start time today

Talked with Mom this morning. Dad was already up in the chair, belted in (to keep him upright and in the chair), and was doing pretty well with eating his breakfast on his own. It's difficult for him to eat with a weak left hand as he can't really cut things, hold a cup with his left and scoop with his right, etc. Basics that we take for granted are now proving challenging for him.

No orders yet from the oncologist on a start time for the chemo today, but we believe that is still the plan. The floor that he is on (neuro/surg) does not administer the chemo, so they'll bring a nurse down from the oncology floor to help out for several hours.

The chemo should make him more fatigued, but should not make him sick or lose his hair. It's an older chemo drug (BCNU) that has proven effective over the years. It's similar to the temodar dad was on, as it's well tolerated and effective in breaking through the blood/brain barrier. Unfortunately Dad is not a candidate for Avastin due to the blood clots he's recently had and the bleeding in his brain. Just too risky.

I anticipate another update later today as I get in touch with Mom and Tracy on the events of the day. I'll get into Omaha late tomorrow afternoon.

Tonight I'll finish packing with Nebraska vs. Missouri on ESPN. A rare treat to get a Husker game on my own television in Oregon. Go Big Red!

Starting Chemo Thursday

The Mayo Clinic Neuro-oncologist has weighed in without seeing the scans (should arrive today) based on talking with Dad's Omaha oncologist. They're going to start Dad on another round of chemo tomorrow to try and go after what they now feel may be tumor growth.

There's not as much swelling as the neurologist in Omaha talked to Mom about the night of admission (the multiple sources of information, all differing of course, gets frustrating), but there is growth (not sure how much) and a new area of bleeding in Dad's brain. They're not concerned too much about the bleeding at this point.

So the chemo cocktail starts tomorrow while Dad is still in the hospital. They're going to put him on BCNU (which requires an IV hooked up), so he'll go down either once every six weeks to have it administered.

Overall, Dad appears to be stable in the hospital medically. Pretty sharp mental acuity, all things considered.

More when I get a bit more information later today. . .

Not a lot of news today - CD's on the way to Mayo Clinic

Not much word out of Omaha today. Dad had a pretty comfortable night at the hospital, without too much interruption. He is markedly weaker on the left side - just hard to believe that he could go downhill so quickly with his strength from just a few days ago.

Mom got a copy of the MRI sent up to the Mayo Clinic, arriving tomorrow. I talked with the Neurology clinic today and left word with the doctor that it was on the way. Hoping to hear from him before Friday when I travel, but knowing how this works, he'll call just as the flight attendant is telling us all to turn off our portable electronic devices and cell phones.

For all the Catholics out there - if anyone knows of someone that can administer Communion daily, Dad is really focused on this right now. We're working with the hospital and rehab facility, but it's not something that we can arrange with much confidence. It really brings peace to Dad (and to the rest of us, as that's all he can focus on until it happens). If you know of anyone that can help out, please call Mom or send us an email. Thanks! I'm going to try and get in touch with Father Dan at Dad's church to arrange for this as well. . .

Not much else to report yet. Mom is still at the hospital, so I likely won't talk to her until later tonight. If anything of substance about Dad's condition results, I'll update the blog. Otherwise, likely tomorrow or Thursday will be the next update.

Thanks again for all the thoughts and prayers. If you could work on warming up the weather to the low to mid-60s instead of 40s (!!!!) in Omaha this weekend, that'd be great.

Settled in the room; CT in the morning

Dad is settled in to his room at Methodist (5 South Tower: #523 I think. . .not positive now that I write it down). Mom is home and exhausted (as I'm sure Tracy is too), but another long day has ended.

The neurology doc came up and talked to Mom tonight, and said that the MRI scan this morning showed a lot of swelling, about the same amount of bleeding as the last scan (not sure what this means - maybe a consistent bleed for the past three weeks?), and growth in the mass in his right side. They all think it's tumor in Omaha - we're just not sure. Whatever it is, it's pressing on the part of Dad's brain that controls his left side.

They will be doing a CT scan tomorrow morning to assess the level of bleeding. They've stopped the low dose blood thinner - probably for a long time -- and want to ensure the bleed is not getting worse. Not sure how long he will be in the hospital this time. When (and if) he goes back to Brookstone, it will be on the specialized care side, where he would pretty much have 1:1 care, which would be fantastic for everyone. Spirits are a bit deflated today with this latest set back, but Dad's willingness to fight continues.

I'm flying home on Friday for several days in the hope of being to help get a break for Mom and Tracy, and to see Dad. Things change so quickly - apparently the past three weeks have been hard on him. Thanks for the notes that are already starting to flow in. It's very much appreciated.

Roller coaster ride just doesn't seem to recognize that it's after Labor Day. All rides should be shut down for the season, giving us months of rest.

Getting admitted to Methodist - 5 South

Well, the MRI results are in. Not great. The mass has grown somewhat, and there is evidence of bleeding in the brain. Not sure if it's the tumor/mass bleeding, or if it's another bleed caused by trauma of him falling out of bed. Regardless, he's on his way to Methodist while the team of doctors get a plan together on treatment.

Mom and Tracy are taking his things out of the room at Brookstone, as they anticipate he will be in the hospital for several days. Apparently he's quite a bit worse today - quite a bit weaker on the left side, even not able to sit up in his wheelchair with a belt to hold him up.

The transport has been called to take him to Methodist. He's going to be on the neuro floor, but not sure yet what room. By the time they get him settled, likely they will watch him tonight to ensure he's not getting any worse while they get a course of action in place.

I've said it before, and I'll say it again: the guy just can't seem to catch a break. More as I hear from Omaha.

New room; MRI on Monday

Dad is now in room #2008 -- a private room that's closer to the nursing station. We're still asking for a limited window of visitors (3-7 only, please) - but he seems to be adjusting into the new room well. His left side is very weak, and he's having difficulty (similar to when he was in ICU from what Tracy and I witnessed) in once he's asked to squeeze a hand or a rail with his left hand, he can't quite get the message through to let go. This proves interesting when he's walking the parallel bars, as his body and legs are ahead, with his left hand still hanging on to the bar behind him. We're not sure what that is. . .but it's another reason why the doctor was called this morning.

The doctor ordered an MRI for Monday, as the symptoms that Dad is exhibiting are similar to when he was having bleeding in the brain back in August. Since he's not getting worse (but not getting any better, either), they're not in an emergent situation to get him to a scan. The facility will take him to Methodist on Monday and then back again after the scan. Dad is not as good as he was on Wednesday when they were able to get him in and out of the car and have Tracy/Mom drive. They will need to take him in the larger transport vehicle.

More news as we hear it this week. I likely won't be doing daily updates unless there are new events or news to share. . .but I will update when I can and as we learn more.

Kind of a rough end to the week for Dad

A few up front items to note:

• Dad is now in room 2016 -- but possibly not for long. They're looking to move him closer to the nurse's station just as soon as a room opens up.
• He is extremely tired, and his left side is rebelling a bit (hopefully just because he's tired and not because they decreased his dose of steroids this week). They are actually checking in to see if a CT scan is warranted, as he's fallen out of bed a few times this week (more details below), and they want to ensure it's not a bleed in his brain again.
• A reminder to all that he really can't see out of his left side. With his door located where it is, please walk around to his right side. . .that's much easier for him to recognize who is in the room.
• We'd like to limit visitors this weekend if possible - please only between the hours of 3-7PM (which allows him a nap after therapy in the afternoon), or even push it out a few days. Even Mom is not going up -- which is also a much-needed break for her -- to try and force Dad to rest.

So the end of the week isn't like what we wanted. Yesterday there was a meeting of the care managers, Dad, Tracy and Mom. They feel he's not making as much progress as they would like. Now, we feel he IS making progress (considering just three weeks ago he could barely get to a standing position, and now he is walking with help down to meals), but know that he has a long way to go. Several nights this week he's been found on the floor next to his bed, as if he'd tried to get up on his own to use the bathroom and then just couldn't physically muster the strength to get all the way back into bed. Last night he was found twice. Ugh.

Now, we have our own questions about how the bed alarm didn't alert someone a bit more quickly.. .but that's for another time. Thankfully the bed is very low to the ground at night (for this very reason - so he doesn't hurt himself if he does work his way out of bed).

Tracy spent the morning up at Brookstone, going to rehab with him (trying to get a sense of how much they are pushing him vs. listening to him say, "I'm tired." ). He really does need an extra push to get better, but obviously there's a fine line between exhaustion and just not feeling like going through the exercises in the mornings. She's also getting more information about how the facility evaluates/assesses progress.

In the mean time, we're actually investigating other facilities to see if there are others more focused on brain injury patients. Brookstone has been very nice, but starting to get the sense that this may be more than they signed up for. . .but that has yet to be determined. We're evaluating options as we don't want to waste a single day of the 100 paid days that Medicare offers us to help get Dad well.

You all have been so nice, and continue to ask what can be done. Once Dad gets rested up again, visitors always help. As do small treats like a fruit parfait from McDonalds or homemade cookies. He escaped from the facility this week, as planned, to go see his oncologist. Mom and Tracy took him through McDonald's for a chicken wrap and a fruit parfait, and you would have thought it was a steak dinner. He was able to see the progress on the new deck, finally underway after a year of working with insurance companies on the storm damage from last summer, and get a view of Omaha from somewhere other than his bed.

New Room, a bit stronger. . .more of the same

Dad got moved to 2007 at Brookstone today. He was a squatter in a private room at the "shared room" pricing, and there was a patient coming in that was going to pay for the extra $35/day for the privacy. . .so off he moved.

Dad is sounding a bit stronger on the phone, and is a bit more alert thanks to the Adderal stimulant that was added back into his daily medication list. He's still confused on what all he can do (yesterday he told me that he was walking for 20-30 minutes), when in reality he did NOT go that long.

He is getting stronger, but still a long ways away from being able to go home. Visitors are ALWAYS welcome - afternoons, early evenings are best as therapy now is in the AM.

Getting stronger - slowly but surely

Apologies for the lack of posts - been quite busy with a launch of a new program at work. Now that it's live, a bit of a breather to allow us all to get back to the normal break-neck pace we're used to. :)

Dad is slowly getting stronger. So hard to see (and hear) him in such a weakened state, but he's improving every so-slightly. They're getting to know him at Brookstone (for some of the wrong reasons - like getting up in the middle of the night on his own, and then being too tired to get back into bed). They've learned that the bed alarm needs to be "ON" for it to alert them when he's trying to get going on his own.

They're doing all kinds of rehab therapy for him to help him with his balance, strength on the left side (and his right), and just overall endurance. He very much needs the verbal cues to focus on keeping his leg straight on the left side -- without it buckling -- and when he is doing the balance bar, which consists of holding a long pole horizontally and the idea is to keep it level -- he needs to be reminded to keep the left side up.

The therapists are also starting to work with him more in the morning hours, instead of afternoon, as he's stronger in the morning and able to do more than when the afternoon hours hit. He still keeps his eyes closed most of the time -- and he says he can't really help that. He had that before surgery also. . .but that improved about a month after rehab started the first time. Hoping that recovers this time as well.

The best news around his endurance is that he's able to walk a distance of 85ft (with assistance), and only has to stop once to rest. Let's not forget that he couldn't walk on his own without two or three helping him just a few weeks ago.

It's going to be a long haul, but progress is being made. Slowly but surely.

And the latest update from Joanne down in Arizona is that over $1020 has been raised for the "Blockin' for Butch" campaign! Sincere thanks to Joanne and to all of the donors for helping raise money for cancer research!

Having a better start to the day - a bit more endurance

The report out of Omaha this morning was encouraging. Dad made it through his morning PT, in addition to having a shower and lunch, all without needing to immediately go for a long nap to recover his strength. He was cognitively "with it" as well, introducing Tracy and Granddaughter Emily to his friends in the dining area.

Tracy was able to get him back to the room and back in bed without assistance. While Dad isn't ready to go for a walk on his own, he's definitely stronger. The nurse even said that he's normally wiped out by noon, so for him to still be going fairly strong after lunch was a good sign.

More this weekend as I get reports from Mom and Tracy, as well as talking to Dad myself.

Back at Brookstone - tired from the move

Dad got back to the rehab facility around 3:00. He's all cleaned up, although someone did a knock-down, drag out job of his chin when shaving him. He doesn't recall a struggle, or a dull razor, but it was one of the two.

The final verdict of why the chest pain? Don't know. With all of the cardio tests coming back the way they should, they've ruled out heart issues. So we have that going for us, which is nice.

The neurologist from the Mayo Clinic called the oncologist yesterday, and reiterated to him that the MRI was stable, and to take another one in 4-6 weeks. No further treatment or changes at this point, although they probably will look at starting to decline his dosage of steroids sooner rather than later. He's still at the highest dose (24mg), and we really don't want him there any longer than he needs to be.

Mom had a bit of a short night at Brookstone, opting to have dinner over with the Huffs, and then go home and just relax. Thanks to our neighbor Gene for sitting at the house while they fixed the phones. Definitely want to get a nomination in for him as "Neighbor of the Year" should that award exist. Everyone has been so nice and helpful - it really is much appreciated.

We're trying to think of ways to engage Dad mentally, since reading books or watching TV is a bit out of bounds right now (we think he's having vision issues and just plain concentration problems). Audio books were mentioned today, so we may try that. Any other suggestions out there?

One more night at Methodist, back to Brookstone tomorrow

Well, all of the tests came back negative today (a good thing). The cardiolite test was completed, and everything came back as it should. However, since the results didn't come back until after 8:30PM local time, Dad bought himself a night's stay at Methodist AND at Brookstone (only one of which Medicare pays for -- you guessed it, the place where Dad actually stays).

He will likely get transferred back to Brookstone tomorrow late morning after rounds, where his bed is waiting for him. There's a waiting list at Brookstone right now, so it's a good thing Mom put down a deposit on the room so they'd hold it until tomorrow.

Everyone is pretty much exhausted, but relieved. Now it's back to getting regular PT to continue to have Dad get stronger so he can go home.

It's 2AM, do you know where your parents are?

Tracy and Mom finally left Methodist after getting Dad settled just after 2AM local time. When they left, Dad seemed quite a bit better than he was earlier in the day, and was going to sleep.

All indications are that he did NOT have a heart attack, but the trouble is that in Dad's mind, he's already thinking quadruple bypass, and asking where he should go to have it done. He called Mom this morning and said that the doctor told him that he had five or six vessels 95% blocked (which, I cannot emphasize enough, IS NOT TRUE!). Poor Dad, just not thinking clear on this, and this is going to cause some undue stress on him and on the family to get him straightened out.

The cardiologist this morning was in and ordered a cardiolite test (which is a chemical stress test instead of using a treadmill).

Pressure is on the hospital to wrap things up before 7:30 tonight, or Mom gets charged basically a night at a hotel rate to keep his room open for his return. Nothing like a nice, easy, restful start to the week!

An all-nighter, now at Methodist, on tap

It appears that Lakeside Hospital is jam-packed, and no beds remain in the ER (apparently some are staying there 48hrs + to get a bed in the hospital), so they are transferring Dad to Methodist where they have a room reserved for him.

They don't like the 'new' type of chest pain he was having, so they want to keep him overnight for observation and additional labs. Since the doctors at Methodist have been following him for a while, they'd like him to have continuity of care. A private ambulance is gearing up to ferry Dad across town, where he will be wheeled up to his room and hopefully a night of decent sleep.

When I talked to Dad tonight while he was in the ER, he sounded very, very tired. He told me that the pain in his chest was very different from a few weeks ago when he was having pain when hiccuping or coughing, as well in a different location. The medical team wants to continue with the cardiac enzyme tests for the full 24hrs and further evaluation by the normal team.

More tomorrow as we find out more. Despite the first round of labs and EKG showing normal, he gets two more rounds of it tonight and tomorrow morning before he's cleared to go back to Brookstone. They're holding his room for him.