Finally seems somewhat comfortable

After several doses of morphine, some ativan, tylenol (for the fever), and a hot water bottle around his neck, Dad seems to be fairly comfortable. It was a very long day getting him that way, however.

We've had a lot of visitors today, and we're quite thankful for all of you. I think we're on box #3 of Kleenex, despite thinking that after finishing drying the tears the last time there won't be enough left to cry again today. We've been proven wrong each time someone new walks in to show their support.

Mom is staying up there tonight. Cathy (Dad's sister) and Doug are staying with me in Elkhorn tonight. Likely will be a rather short night as I want to get back up there tomorrow morning with breakfast for Mom, and to see how the night went.

We all cannot believe how much Dad has declined, even in the past 24 hours. It's really hard to see him clearly wanting something (to be turned, a mouth swab, some pain medication) as he's not answering us with hand squeezes anymore. He is still holding your hand when you put your fingers in his, though, which is very sweet.

I'll likely put up another post tomorrow morning after getting the report from tonight.

Still working to get him comfortable

What a difference 12 hours makes. He seems quite a bit more agitated, exhibiting Cheyne-Stokes breathing (where he takes decreasingly deep breaths until he has apnea for about 15 seconds), and is very fidgety and restless. He's had two doses of morphine, and then one of ativan. It calms him down for about 30 minutes or so, and then it kicks back in.

We can't determine if he's in pain or just restless - inconclusive based on his reaction to the medications. We are working closely with the medical team to get him comfortable as quickly as possible.

Mom is going to stay up here tonight. I'm trying to get her to go home for a few hours to get her things together, but so far no luck.

We've had a steady stream of visitors today. Dad's closest friends and family have been in, and we expect more this evening as they arrive in from out of town.

Starting morphine to get him more comfortable

Mom just talked to the nurse at Brookestone. The decline has continued, and Dad is no longer taking water or medication. He seems to be a bit uncomfortable, so they're going to start him on some morphine to make him more comfortable.

Based on the nurse with 32 years of experience, she felt that since he stopped taking water and medication, and just how he's acting, we're not looking at much longer. Probably 72 hrs or so was her guess, but he could make it longer.

We now pray for peace for Dad and that he can stay comfortable in the final leg of this journey with a brain tumor that wasn't invited, and that he fought like hell to get rid of for 18 months.

Grandma and Uncle Steve are on their way up to Omaha now, and we'll be up at Brookestone shortly.

More of the same, getting harder to understand

Spend a good part of the early afternoon with Dad today. He was a bit more restless today, especially this afternoon. He really can't turn himself or change position, so I think part of it was he wanted a different angle to sleep in.

His left side is pretty much non-responsive at this point, so they have to be careful of how they position him. With his voice so soft, and really anything that he tries to say coming out garbled (to the point that we just cannot understand him at all), we've resorted to trying to guess what he needs, and then ask him yes/no questions (squeeze our hand once for "yes" - two times for "no") until we try to figure out what he'd like. It's really hard.

He's not eating (drinking) much at all. Trying to get him to drink anything requires him sitting straight up in the hospital bed, so that if doesn't swallow right away (which happens quite a bit), it can come out of his mouth instead of down into his lungs.

He seemed ever-so-slightly more alert today in that he wasn't in a deep sleep, but definitely didn't open up his eyes or start talking. We had more visitors today (thanks, everyone!), which really means a lot that you come up even though Dad really can't interact or engage in the conversation. He's still in there, he just can't take part right now, so your visits and talking with him or with others in the room helps him a lot. And it helps Mom and the rest of the family by offering some respite from the thought of needing to be up there all day.

Huskers had a brutal loss -- really glad that Dad didn't see that one. I wish I would have slept through that game.

I'm off to a sleepover with the kiddos -- which means I'll be up early for "Auntie's Special French Toast" and some Looney Tunes before heading up to see Dad. More later tomorrow.

All cleaned up, lots of sleeping

Made it back to Omaha this evening. Dad looked better than he did on Tuesday night, probably because they had shaved him and changed his linens. He didn't really open his eyes, but did realize I was there, and tried to talk to me a bit. I couldn't really understand him as he was talking so softly, but when asked some "yes" or "no" questions, we were able to communicate.

Lots of visitors coming up, which is really nice. Thank you. The support you all have offered to the Dillons these past several months have been exceptional, and we hope to be able to repay you someday. They say that you know who your true friends are when things get rough -- well, you ALL have stepped up to a level we didn't expect or realize was possible.

Early next week will be busy with deciding next steps around hospice care, facility questions, and what's the right amount of therapy for Dad. Definitely trying to keep him very comfortable - which he is, thankfully, pain-free and resting easily. As hard as this time is, knowing that he could be a lot more uncomfortable really makes us thankful. The care he's receiving at Brookestone is exceptional, and the staff couldn't be more accommodating or helpful to us.

Old Neighbors Reunite

It's always good to see familiar faces. But when it's not planned, it's even better. Our old neighbor (and grandfather to good friends of ours from the 1970s) is next door to Dad at Brookestone. I just talked to Mom -- I'm enroute back to Portland for a 12 hour layover -- and she said she was seeing quite a few of the old crew.

Things with Dad remain the same. He's sleeping nearly all the time, so please don't worry about waking him up if you come to visit. Try a couple of times before giving up if you don't get a response. If we didn't wake him, he probably would sleep through meals and his speech and occupational therapy.

Probably this weekend we'll dig in to see what options we have for Dad if he's not able to stay at Brookestone per Medicare guidelines. I'm going to talk with the Oncology office tomorrow to see what suggestions they have for inpatient hospice care in the Omaha area. If any of you reading this have experience with that and have recommendations, please send me an email or make a comment here and I'll get in touch with you.

Final Note: A huge shout out to Jeff Rott in Portland for going above and beyond for me today. I somehow lost my car keys on the journey to Omaha last week, and he went to the house, got my spare set, and went down to put the spare key on the tire so that when I got in tonight I'd have a fast trip back to my house before shuttling back to PDX tomorrow morning. Thanks also to Alice and Scott for their help in coordinating, and for the ride tomorrow. I hope someday to be able to repay you all for the generosity!

About the same as last night

Things with Dad continue to not be good. He's not really responding to questions or commands, but yet is still able to wake up enough to have some yogurt for breakfast. Definitely keeping him off of foods that require chewing right now, as he's just not able to focus long enough (or stay awake?) to chew it and then swallow. Even liquids pose some challenge, so they're watching closely so he doesn't aspirate.

He had a very quiet night, and the nursing staff helped get him cleaned up this morning.

I did leave Omaha early this morning, and am now in hot and humid Houston for the night. Then off to Portland tomorrow to get some things wrapped up there and grab some additional cold weather clothes, and back to Omaha on Friday. I'm currently looking for the keys to my car that is parked at the airport -- with no luck in finding them. I now have very good friends in Portland (Jeff, Alice & Scott) working out between them who is getting into my house to get the spare set, and driving down to meet me tomorrow night.

As we've learned the past 18 months, there are some great friends and neighbors that will bend over backwards to help in a time of need.

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.