The Final Post

I think I've attempted this final post about thirty times.  As I'm sure you can understand, closing down the blog means the end of a very large part of our lives over the past 18 months.  It still doesn't seem real that Dad is gone.  It was made more real on Thanksgiving when there wasn't the need for family to sit up at the island as there wasn't enough room at the big table, because there was.

Christmas and birthdays are now coming up - yet another opportunity for us to realize that a critical member of our family is no longer with us.  Dad loved Christmas, and was the biggest kid when it came to wanting to open up presents early, and to go overboard with the grandkids.

We are all doing our best to move forward.  The paperwork and process alone is exhausting.  Learning just how much is out there that needs to be changed over to just Mom's name, or figuring out if all of the planning that went into the final days was enough, and the cards and letters that continue to flow in. . .

The first snowstorm of the season hit Omaha last weekend, and no fewer than four of the neighbors in Elkhorn called Mom to make sure she didn't need anything.  They scooped the driveway, brought up the paper and the mail, and just checked in regularly.  A heartfelt thank you for that.

To go back to early November, the service at Ft. McPherson was very nice.  While we had fewer family members there than anticipated (due to the storm pushing out the service several days), it was a beautiful day.  Dad's final resting spot is just four down from his very good friend Rich Rea.  I feel Dad would be smiling at that news.

For those unable to make the service, I put together a slideshow of the way we want to remember Dad:

http://gallery.mac.com/marydillon#100425

Thanks for following us through this journey.  Merry Christmas, Happy Holidays, and be sure to stay in touch.

Love,

Mary and the Dillon Family

New Service Time at Ft. McPherson - 2:30 Wednesday November 4th

We have rescheduled the services at Ft. McPherson.  They will now be at 2:30PM tomorrow (Wednesday) November 4th.  We will be driving in from Omaha, and then returning the same day.

The weather forecast looks much more amenable for the trip out tomorrow than it showed on Friday.  Look forward to seeing some of you there, although the crowd will likely be significantly less as many family members and friends are no longer in the state to join us.

Snowed In (out) of Ft. McPherson

2 feet of snow on the ground and a closed interstate changed our plans this morning.  We will reschedule the burial for next week once the weather clears in Western Nebraska.  I'll let you know when the services will be once we know more, probably on Monday when we talk to the Ft. McPherson staff.

More on the service this weekend; watching weather for the burial tomorrow

All,

An overwhelming day with the funeral mass and the wake service last night.  One final part remains - the burial at Ft. McPherson.  It seems the weatherman is throwing us a bit of a curve ball, predicting up to a foot of snow in the North Platte area.  We will be checking the weather in the morning before deciding if we will keep our 2:30 service or postpone until next week.

Right now, we are still "on" for the service, but may need to cancel due to weather reasons.

Obituary and final arrangements for Ft. McPherson Friday

Roger L. Dillon
Roger L. Dillon, 65, of Omaha, formerly of North Platte, passed away Oct. 20, 2009. Our loving husband, father, and grandfather has lost his brave 17 month battle with brain cancer. We will miss his enthusiasm for life, his ability to light up the entire room, and the way he would drop everything to help someone. His joy in life was his family, especially his four grandchildren that he loved dearly. He spent 38 1/2 years working at Union Pacific and has enjoyed retirement since 2001. He is survived by his wife of 44 years, Jan; daughters, Tracy (Rich) Huff of Omaha, Mary of Portland, Ore,; four grandchildren, Dillon, Emily, Sam, and Kaitlyn Huff; sisters, Cathy (Doug) Lamberty, Gloria (Don) Piper of North Platte; brothers, Mike (Jodi) Dillon of Lincoln, Larry Dillon of Grand Island; mother-in-law, Maxine Jennings of Lincoln; brothers-in-law, Steve Dent of North Platte, Mike (Cindy) Dent of Redding, Calif.; sister-in-law, Nancy (Keith) Rudeen of Overton; and many nieces and nephews, and many, many wonderful friends. Roger was preceded in death by his parents, Lawrence and Judy Dillon. He will be greatly missed by his family and those fortunate enough to have known him. Visitation with family will be on Wednesday from 6-8 p.m., with a wake service at 7 p.m., at the John A. Gentleman Pacific Street Chapel in Omaha. Memorial Mass will be on Thursday at 1 p.m., at St. Vincent de Paul Catholic Church in Omaha. Burial will be on Friday at 2:30 p.m., at the Fort McPherson National Cemetery near Maxwell. In lieu of flowers, memorials are suggested to the Make a Wish Foundation of Nebraska, an organization close to Roger's heart.

We are well fed, and getting ready for the service

Thanks to you all for bringing everything from homemade banana bread to sloppy joes to spare ribs/corn/potatoes. . .and that's just been in the past few days. We are lined up to receive meals through Tuesday, and are eyeing the treadmill downstairs with a bit more guilt after the wonderful homemade cooking we've been gifted. Such a nice gesture, thank you.

We have finalized on the obituary, and it will run in the Omaha World Herald Tuesday and Wednesday this week. It will also run Sunday and Tuesday in the NP Telegraph. What a horrible way to spend an evening: writing an obituary. I couldn't even read through it yesterday when we were finalizing it before sending it to the mortuary. This is going to be a hard week.

The kids continue to make us cry with their questions and comments, but we are so thankful to have them around. Last night, Emily said, "Auntie, do you think Grandpa is laying on a cloud next to Grandpa Bill?" (Grandpa Bill is my grandfather who passed in March of this year). And Sam this morning -- "Auntie, when will Grandpa be back in the hospital so we can see him?"

We don't make it far without Kleenex in our pockets right now.

We also finalized on Dad's memorial. We selected (or actually Dad did through his actions and words) that in lieu of flowers, please consider a donation to the Make A Wish Foundation of Nebraska. It was an organization close to Dad's heart, and that I used to volunteer there as a wish granter, I know how much donations mean to them. The information will be available at the wake service Wednesday, but here is the information for those unable to make it:

Make-A-Wish Foundation^® of Nebraska

nebraska.wish.org

11926 Arbor Street¸ Suite 102
Omaha, NE 68144

Sometimes kids say it better than adults

The unenviable job fell to Tracy and Rich today to tell the kids about Grandpa's going to Heaven. Their reactions brought the house down.

Dillon wrote the letter to the left. Tears.

Both Dillon and Emily wanted to write notes to Grandpa, and tie them on a balloon so they make it up to him in Heaven. Then Emily, ever the logical one, said: "Hopefully it gets up there before a bird swoops in and pops the balloon."

Sam (age 3) said: "When I'm 18, I'm going to get a van and drive to Heaven and bring Grandpa back to you, Mom."

We had a good evening with the kids, and dinner from Dottie (thanks!). It had been a while since all of them had been out here, so the first step towards accepting the change is underway.

The day was very difficult - a lot of phone calls, visitors, deliveries, and emails sent in support. All we can say is Thank You. We always knew that Dad was an incredible man. It seems that you all felt the same about him. He will be sorely missed.

Services are being finalized

Thank you all for the outpouring of love and support in the past 12 hours. We are humbled, and overwhelmed, with all of the friends and family extending their condolences.

The family is hanging in there, relieved that Dad has finally been released from the fight of his life. A lot of phone calls, arrangements, and planning begins.

As the norm dictates (seems like every challenge came during a holiday, a vacation for a doctor, or on the weekend when there was limited staff), Dad's priest that he really connected with, Father Dan, is on vacation and out of the area until next Tuesday night. So we are planning the following, as we'd like Father Dan to perform the funeral Mass for Dad:

Wednesday, October 28th

Rosary 7:00PM

John A. Gentleman Mortuary

14151 Pacific Street

Omaha, NE 68134

Thursday, October 29th

Funeral Mass 1:00PM

St. Vincent de Paul Church

14330 Eagle Run Drive

Omaha, NE 68164

(located between Blondo and Maple Streets on 144th St)

Friday, October 30th

Full military funeral honors burial

Ft. McPherson Cemetery - Time TBD (details pending, but likely mid-afternoon)

12004 S Spur 56A

Maxwell, NE

For those coming in from out of town, we can recommend the Hilton Garden Inn on 180th and Dodge Street. It's near Village Point Shopping Center, with good restaurants and close to just about everything. Address: 17879 Chicago Street.

Dad has found peace. The fight is over.

It's beyond difficult for me to deliver this news, but we lost Dad around 6:30PM tonight. His color had been changing and his breathing had changed most of the afternoon. He went very quietly, and was very comfortable in the final hour. It was just me, Mom, and Tracy in the room and it was very quiet.

He has found his peace that we've been praying for, and I look forward to hearing the reason why God took such a good man so early. He must have had something special planned for him.

Starting to decline further

Dad now has hiccups all the time, and is very congested. His coloring has changed for the worse in the past hour or two, and we really don't feel like this will last much longer. As hard as this is, we just want him to find peace after an incredibly hard-fought battle.

They've started a bunch of new medications to keep him comfortable (steroids, hiccup medicine, stronger doses of pain meds and higher dose of ativan). We think we'll all be staying up here tonight.

Thanks to Dee and Marlin for the great sloppy joes. I brought them up to Brookestone, and shared them with everyone in the room. And then thanks to Bill and Shirley for going home and turning off the crock pot that I had left on in the kitchen.

I will be updating the blog this evening as anything changes.

Pretty comfortable night, hiccups interrupted me more than him

My praise for Brookestone continues. They have set aside a family room (which is a full room, with a bed and recliner and bathroom) for families, which pretty much means us right now. It gives us a place to go rest, to talk on the phone without bothering others, and. . .drumroll please. . .get a shower after a night of not much sleep. I feel like a new person, and I'm sure you are all going to appreciate that as well if you're visiting today.

Dad doesn't seem as comfortable the past several hours, so we're working to get him in a new position and get his discomfort back to a lower level like we had it last night. He seems to like being on his back best, and definitely calms down when he gets settled into that. They're likely going to increase the oxyfast (morphine) this morning as well, as he just doesn't seem to be completely comfortable. And his reaction to having his VERY sore neck moved to face another direction was AWFUL -- and with all of that morphine on board now, that just really must hurt him.

He's had the hiccups several times tonight/this morning. Just between two and seven hiccups in a row, and then no more. But wow, those are loud and disruptive hiccups. They agitate him some, so we're always glad when they're over. He's also getting some congestion in his lungs, as he's not able to clear them with coughing.

Now waiting for his new doctor to come in to see how things are going, and likely adjust medications some to keep him resting.

A few of us are on the countdown to dinner for the famous 4th of July sloppy joes, courtesy of the Nelson's in Ralston.

And a quick story from Granddaughter Emily's pre-school conferences yesterday. She goes to a preschool that is run by Tracy and my first grade teacher, and it's in a church. Well, they went around the circle to ask what they'd like to pray for, and Emily, sweet, sweet Emily (who is 4) said: "I'd like to pray for Grandpa to get better."

That story brought the house down and looking for Kleenex yesterday.

Comfortable, "hours to days" left

We had a much better day with keeping Dad comfortable, which is much more comfortable for all of us in the room.

We moved over to hospice care today with the Visiting Nurses Association, which has the ONLY palliative care expert in Omaha on staff. This is a doctor whose sole purpose is to make someone comfortable at the end of life. This level of stress was reduced from the minute they walked into the room. It's the response we were hoping for. They've ordered regular pain meds (in the morphine "family", but one that hopefully reduces the itching that Dad was experiencing as a side effect of the medication), anti-seizure medication that has a sedating effect, and a direct line to get orders changed in the middle of the night or on the weekend. (It's Dr. Sauer if you are looking for him - we cannot say enough about him, and we only met him this afternoon). The doctor will be up DAILY to see Dad and talk to us. Color us impressed.

Yet more visitors today from neighbors, former co-workers, and family that came bringing the sugar that we all need to keep going :) -- including a gigantic basket of chocolate, hard candy, and kleenex from Mike and Jody (Dad's brother and sister-in-law) and yet another basket of goodness from John (my former English teacher and now good friend). The nursing staff both loves us and hates us for the open invitation to come in and go "trick or treating" in Dad's room.

I did get Mom to agree to go home for some rest tonight. She was ready for bed at 6:30PM, and hopefully is able to just go to sleep soon. I'm going to stay up here tonight with Dad in his room for that ever-watchful eye on making sure he stays comfortable. The nursing staff has been great, and I can say that he really does look and act a lot more comfortable since Hospice took over and got a bit more aggressive on his comfort care.

The doctor told us today that we're looking at "hours to days" for Dad. He said that he has started the end of life process with changes in his breathing, some circulation changes in his extremities, and general unresponsiveness. He said that the rapid decline will likely continue, but there is no way to truly know as Dad is still a young guy and has a very strong will to fight to the end.

This is such a brutal experience, but the outpouring of support from family, friends, and the medical community --- we just can't thank you all enough. It's so obvious that you all care for Dad so much.

Similar to last night, no major change this morning

Already had a stream of visitors this morning. Cousins Aimee and Wade brought up a box of LaMars donuts, which went over well in the room. Felt bad that Dad couldn't join us for a sugar fix, as he was in quite a habit of "donut runs" at HyVee grocery store before his last admission to the hospital.

Hospice will be in today - we're not sure what time yet. Will look to keep Dad here at Brookestone to avoid the disruption for both him and the family.

He is still having his unstable breathing, seems a bit restless. They're alternating morphine and ativan to keep him comfortable. The nurses do not feel he is in pain, and that this is all part of the process as his body shuts down.

The best neighbors a person could ask for, Bev and Gene, came up this morning. Such great support for the entire family, but particularly for Mom. You all should be vying for the lot next to them - it's still open.

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.

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.

Update from the ER: things have calmed down, Dad sleeping

In typical fashion, nothing is showing up on the tests and Dad is sleeping in the ER. They're waiting for tests to come back to definitively tell us that there are no issues with the heart, but Dad is resting comfortably and the doctors don't feel it was a heart attack.

We continue to wait. Chances of Dad returning to Brookstone tonight are high.

Whew.

There are ups and there are downs

Today was a mixed day for Dad. When the bed alarms sounded to the nursing staff, they got into the room to find Dad had walked himself (or stumbled?) into the bathroom on his own. Good news and bad news - good news is, he seems to be getting a bit stronger and was strong enough to get there on his own. Bad news, he doesn't follow directions to call for help as he doesn't quite realize he's not stable enough to do it.

Successfully making it there on his own is NOT the type of behavior reinforcement we're looking for.

He had a pretty good weekend, with lots of visitors and seemingly a bit stronger. Tracy was headed up there with the two youngest grandkids tonight when she walked into the room and asked how things were going, and Mom said, "Well, not so good."

Severe chest pain, increasingly getting worse, has bought Dad an ambulance ride to Lakeside Hospital (the closest to Brookstone) to get evaluated. Not sure if a clot is progressing through his lung, if he's having a heart problem/attack, or if it's just indigestion. He had enough of the classic signs that the nursing staff didn't want to mess around (and neither did we), so he's getting loaded up as I type to go to the hospital.

More as I hear it from Omaha. . .

The weekend has arrived; Dad a bit stronger; still exhausted

Well, the weekend is finally here. Why is it that the short weeks due to holidays always feel longer than four days?

Dad officially has a "First Down" in the Blockin' for Butch campaign. Thanks everyone! It's not too late to send a check down to Arizona to help even further.

Dad's has had a better couple of days, but he's still really, really sleepy. They're looking to restart him on a stimulant to maybe kickstart him a bit for therapy. The good news is that what used to take three or four people (getting him out of bed, to the chair, etc.), now only takes two.

Dad is spending his days of therapy (well, hours right now) on the parallel bars, getting stronger and getting his legs back working like they should. Hard to believe that they need to go back to the basics, but that's exactly what they're doing. He also had his first real bonafide shower yesterday, and he said it made him feel like a million bucks. Progress.

I'm getting inquiries on when is a good time to visit up to Brookstone. The best answer I can give is, "When he's not in rehab." His schedule is changing quite a bit still, so probably the most consistent time he's available is over meal times, or in the evenings (early, as by 7:00 he's very wiped out from the day).

I'm off to try and listen to the Nebraska game on the radio (no PPV here in Oregon) and clean up the house a bit. It was much easier in Omaha when the Merry Maids came to clean. I may need to give a "To Mary, From Mary" present this fall for a deep cleaning of the house by someone other than myself. :)

About the same today, better PT sessions though

Dad's still really tired. He did have a bit better effort during PT today, though, according to the therapists. Hope it will just take him a few days to get back into the routine and he will start seeing benefits from the PT.

The doctors are also looking into adding back in some stimulants like Ritalin or Adderol, as he seems extra tired right now.

Had some visitors the past two days - including the grandkids, friends, and family. Thanks for stopping by to see him! I know it helps him pass the time and brighten up his day to see some familiar faces around.

Day One at Brookstone: "Exhausted."

I talked to Dad briefly tonight - and he sounded incredibly tired. The move from the hospital to the rehab facility really wore him out. He did get settled into his room yesterday, and already has received quite a few visitors.

His routine for the next few days will be Occupational Therapy (OT) to help him get up, get dressed, and cleaned up; then breakfast down in the kitchen area; then Physical Therapy (PT). Back to his room for a rest, and then Lunch, PT, and either OT or speech therapy in the afternoons. He was too exhausted to do the afternoon session of therapy today, but he did get quite a few visitors tonight to pump up his spirits a bit to try and tackle tomorrow.

We'd love to see progress every day, but know that he'll have some days that don't quite meet expectations. It's good to have him focused on rehab and not on regaining stability of blood pressure or breathing.

Go Dad, Go!

Progress! Out of the hospital and now at Brookstone

Dad has been moved to Brookstone Meadows (www.brookestonemeadows.com) in Elkhorn -- a nice change of scenery and activity after two and a half weeks at Methodist. He's in room #2011, and is getting settled. I'm sure he'd LOVE to get visitors to come hang out in the common areas, etc, when he's not getting therapy. We'll know more about his schedule over the next day or two, but he's officially out of the hospital. Whew.

A few updates:

• Dad is fully on steroids in pill-form now; no more IV steroids. Seems to be tolerating that well.
• His PICC line will be in place for another week or two in case they need a quick line or need to access to draw labs, etc.
• He's continuing on the Lovenox (tolerating that well also), and may get back up to Coumadin at some point in the future for blood thinners.
• All labs from the weekend were normal - no outliers to cause any alarm
• Dad will get another MRI in about three weeks to check progress on the hematoma as well as the necrosis.

The oncologist thought that we should know in about a month on how Dad's recovery will be longer term. He's lost a lot of muscle mass and strength, but now feel he's going to make a big step forward with some focused rehab specialists helping him. If nothing else, getting out of the hospital and into "daytime clothes" as the Grandkids call them should help him feel better.

Quite a bit stronger last night, potentially to Brookstone today

Before leaving for the airport yesterday, Dad seemed good. Walking in, he seemed immediately more alert, looked stronger, and even talked stronger. He REALLY wants to go home, and can't understand why he can't just "check out" at night to go home and sleep in his own bed, and check back in to the hospital in the morning.

There's a pretty good chance that he will be discharged to a skilled rehab facility today or tomorrow. I haven't received the update from Omaha yet this morning on what the report was from the doctors coming back from the Labor Day weekend (I got back to Portland late last night).

More as I hear it. . .

Blockin' for Butch

One of Dad's friends, Joanne Neff Harroun, is chairperson for the Relay for Life, Luminaries Committee.  They are planning to light 60 luminaries (maybe more!) for Dad on Oct 16th during the event under "Blockin' for Butch".  The luminaries represent "10 yards" or a first down.  They will burn all night long as relay teams walk around the track around the football field.  The call has gone out to his St. Pat's High School Class of 1962, but I thought I'd promote it a bit on the blog as well.  

The plans are to have luminaries around the high school track in memory of someone lost to cancer, in honor of someone still fighting the battle, or a survivor.  A donation of $10 to the American Cancer Society will purchase one luminary.  You can send a check made out to the American Cancer Society directly to Joanne (address below).  We're looking for a "first down" for Dad, which would mean $600 in donations.

Joanne Harroun

16228 West Lago Verde Way

Surprise, AZ  85374

A call for visitors. . .

Labor Day weekend -- nice cool weather, great football games in Lincoln, and birthday #3 for Grandson Sam.  Unfortunately, Dad is not able to enjoy any of these things as he hangs out in the hospital for a while longer.  

As he's starting to be a bit more alert and aware, he's also starting to get bored and looking for company in the room.  He's not able to read or type on a computer right now, and watching TV doesn't really interest him. . .so it's all about the conversation.  

If you have any interest in stopping by, Dad will be at Methodist (room 505) for a few days yet, and possibly longer.  I know he's love to see you and make the time pass a little bit faster (even though he really doesn't have much of a concept of time right now).

Mom thought Dad looked pretty good last night, and they even ordered Valentino's pizza to be delivered to the room for the Saturday night dinner.  Not a lot happening this weekend, just more rest and some PT to continue getting him stronger.  He likely will either be evaluated for in-patient rehab again early this week, or will be discharged to Brookstone (likely) where they will work with him to get him stronger and back to a somewhat normal course of events.

Murphy's Law has nothing on Mary's Law

You knew it would happen.  The Mayo Clinic neurologist called my cell phone as it was sitting in a bag of Uncle Ben's rice to dry out some of the components (long story, but my phone got wet yesterday).  He said really no change in the MRI from a few weeks ago, and that he would try to catch me next week when he was away from the office.

Dad had a pretty good night, and even made it up to the chair with one other person.

Off to the game now, Mom's heading to the hospital.  More later tonight upon her return.

Still in hospital, seems stronger today

End of a long day, and I'm officially fighting a cold (I'm the annoying sneezing person at the end of the table), so this won't be too long.

Long story short - last night the nurse confirmed that they were tapering Dad down on steroids (from 24mg to 18mg yesterday, down to 12mg today).  Well, the admitting doctor (our oncologist that we LOVE) was not happy about that, so he was going to make sure that Dad was still on the high dose, but look to get him away from IV steroids and back to pills in the next several days if at all possible.

He also said that he was NOT going to discharge from the hospital for several days, likely next week to a rehab facility (either in-patient or separate like Brookstone).  Bottom line - Dad is not ready to get out yet.  He also is going to talk to the neurosurgeons about adding some low dose blood thinners back into the mix (lovenox) to start battling these blood clots now that the bleed in his head is stopped.

This afternoon and tonight Dad seemed stronger and a bit better color.  He made it even walking (with a LOT of help) from the bed to the door and back to bed with PT today.  Grandson Dillon came up tonight as well.  Went STRAIGHT for the ice cream freezer on the floor and helped himself (and Grandpa) to some ice cream.  Dad perked up a bit when he was there, which was good to see.

I believe in the "Full Moon Effect"

I have ever since I worked as a tech in the University of Nebraska Medical Center ICU back in the mid-90s. There's something to it. I think it's working the magic on our family right now.

Dad didn't have a very good day. He looked pale tonight, was very lethargic, and not making a lot of sense about the things he was talking about. He did wake up a bit for dinner - which he inhaled, but then got sleepy and starting dozing off before we even left the room. He did get a brief visit from baby Kaitlyn tonight - and you should have seen that little girl turn her head towards Grandpa's voice when he was talking to her. She wasn't exactly in top notch form, as she had just returned from being diagnosed with a double ear infection; but she still smiled and really focused in on her Grandpa.

We still don't know what the plan is for tomorrow. Brookstone did come up for an evaluation, but he barely answered questions and didn't respond very well for the nurse. Based on how he looked today, I'm not sure how they can discharge him from the hospital. . .but he's stable medically (we think) but just not strong at all in physical or cognitive functioning.

Tomorrow will likely be a whirlwind of a day; or it could be quiet. Who knows. Considering it will be a full moon, I'm expecting chaos.

Unanticipated flurry of activity

Just walked into the hospital after having had a tour of Brookstone in Elkhorn (a skilled facility to help rehab patients to get them back to where they need to be). All of this was triggered by some unplanned talk from the hospital late this morning on about how Dad did not meet the criteria for in-patient rehab and would need to be discharged to another facility until he is strong enough to get through in-patient rehab.

Well, that was all news to us. First of all, Dad in the mornings is not good at all. I think they did the evaluation quite early this morning, and in all honesty, I'm not sure I would qualify if put throught the tests at that hour. Anyway, so it was recommended we look into Brookstone (out by Mom and Dad's house), so I buzzed over there to get the full tour and talk with the staff there on some of the question around what they would do there, as well as more information around the costs and what insurance will cover.

All I can say is this: if you can get good long-term care insurance, get it. Yikes. It's expensive without it.

Anyway, now back at the hospital. They're in the room with Dad now, so Mom and Grandma and I stepped out to the family room. Had a good chat with Jack Kirkwood (ran into him on the way into the hospital), and now waiting for the room to open back up. May be as early as tomorrow that Dad gets discharged. For those that know me at all, you realize I like my expectations managed. Well, the expectation that Dad would get out tomorrow was not set. . .ugh. So we're all running around trying to get some loose ends wrapped up in preparation for the possible move.

I'm hoping that they will re-evaluate Dad for in-patient rehab yet this afternoon thinking that he could qualify. If not, though, we've got the plates spinning in a couple of other areas just in case.

Oh, and it's STILL raining. Kind of a gross day here - been storming/raining since early this morning.

Pretty good end to the day

Dad had a good end to the day. He had a strong voice, ate dinner nearly on his own, and even used his left hand to balance the chocolate frosty as he used his right hand for the spoon. Definite progress.

Dad was pretty tired by the time we left, and his hiccups were still really causing pain in his chest. They're trying antacids, thinking that maybe the higher dose of steroids is causing the issues. He had a decent appetite.

Thanks to Bill and Shirley for stopping up tonight - it was good to see you! No call from Mayo Clinic today, but expect it really at any time.

Not much else to report other than I dragged Mom and Grandma to Barrett's Bar and Grill for a Blarneystone sandwich and a Boulevard Wheat Beer. It was just as good tonight as it was 16 years ago.

Other than having to pull over quickly on Dodge Street to get the top of the convertible up during the flash rain storm (with NO warning - there were a few drops and then downpour), today went pretty well. The house is very clean, and so happy that someone else cleaned it. Let's hope that doesn't turn into a habit.

Not as strong as yesterday, but still hanging in there

Dad had a pretty good night. Not sure how much he slept (without the constant monitoring of ICU, it's hard to tell unless you're in the room with him). He's in the corner room by the ice machine which is great during the day for family members, but not so great at night when trying to sleep.

No word from the Mayo Clinic yet, but we did hear from Dad's oncologist this morning. He definitely wants to check into having Dad be part of the in-patient rehab there at the hospital once he's medically able to go. This allows his doctors to check in on him daily and monitor progress closely. Mom is talking to the social worker today to get everything lined up to ensure that the insurance would cover it. He also wants to talk to Neurosurgery and find out when they can start a low-dose blood thinner. With his high susceptibility to blood clots, they'd really like to have him on a therapeutic dose just as soon as he gets cleared from the neurosurgeons that the bleed is all healed up in his brain. His daily chest x-ray still shows no pneumonia or other issues with his lungs -- good news. Being in bed that long without a lot of activity tends to lead to pneumonia. Definitely not what we want.

There isn't a nurse's aide on the floor today, so we're making sure that someone is in the room at all times. Mom and Grandma just went up, and I'm hanging back while the house is cleaned (which is going to be awesome!). Everyone is pretty tired after the past week and a half, without much of a break in sight. Thankful we're not dealing with this from a hotel room, as there is something to be said about being "home" at the end of the day.

I plan on going up after the merry maids are done to see him, and then on to shop for a microwave at Nebraska Furniture Mart. Fixing the old one just doesn't seem like the right thing to do, especially when you can get a new one for the price of fixing the old one. Not sure Mom agrees yet, but we'll see.

Stronger, lots of visitors, and out of ICU

We all wrapped up the night with a "Nebraska" dinner, including perhaps the BEST corn on the cob we've tasted (bought at the farm stand on 204th street in Elkhorn by the Arby's parking lot).  Ever.  Filets from Rick's Meats in Elkhorn, corn on the cob, fruit salad of fresh cantaloupe, strawberries, and blueberries and a Villager apple pie for dessert.  It was fabulous, and we shared with all of the Huffs.  Good to have the house full of family and a good home-cooked meal.  Wish Dad could have been here for it - he would have loved it.

Amazing what a drug hanging from an IV pole can do for someone.  Dad was moved out of ICU tonight to the neurology floor (Room 505), and is so far doing well.  I just talked with his nurse, and she said that he was very tired, but doing pretty well.  We really don't want him on this high dose of steroids too long, but it's clearly the dose he needs so we weigh the risks with the benefits.

I guess earlier tonight when Mom and Grandma were up there, he actually had both arms behind his head (like if you were to lean back on a bed with both arms behind your head) -- this sounds minor to most, but major to us as Dad hasn't really used his left arm much in the past week and a half.

Thanks to the visitors for stopping up today -- both family and friends.  Now that Dad is starting to be a bit more alert, this really helps stimulate the brain for him with someone other than the immediate family.  

I expect to hear from the Mayo Clinic tomorrow at some point, with the scans confirmed to be delivered to the front desk early this afternoon.  

A little better today, likely due to increase in steroids

As Dad wraps up his first 24hrs on the highest dose of steroids, he seems to be slightly better. PT was in this morning to get him up to the chair, and they commented that he seemed a bit stronger, and he ate breakfast under his own power. Eyes are still closed most of the time, but is a bit more alert. He should (hopefully!) become a bit more alert and a bit stronger, allowing him to do more PT and start building back muscles he's lost. Really no strength at all to speak of, so he has a long road of recovery ahead.

Dad is on the list of patients to be moved out to the floor today (6 South), which is a good sign. Not sure if we'll hear from the Mayo Clinic this afternoon, but the scans should arrive at the front desk of our Neurologist around lunchtime.

Grandma is on her way back up to Omaha to stay for a few days - we always love to have her around. And the Merry Maids are coming tomorrow to do a deep clean of the entire house. We're hoping that clean baseboards and mopped floors will brighten things up around here and allow us to stop saying, "We really should clean the house today." Who says money can't buy happiness? I'm beyond thrilled someone else is cleaning the house. :)

Ruling out heart problems. . .(sigh)

Well, Dad's heart rate decided to jump up to 115 (which, when you're usually 45 beats per minute, that's a pretty significant increase).  He was complaining of his chest hurting when he coughed, so on came the onslaught of labs and EKGs to rule out a heart attack.

EKG was normal, as were the first set of labs that would show a cardiac enzyme that only shows up when there's been heart damage.  We think it's just the blood clots in his lungs hurting when he coughs, but with the increased heart rate, they wanted to be sure.

Still no orders to move out of ICU, but those may come in the morning.  For now, he's resting comfortably in his bed. 

I always miss the visitors, it seems.  I went off to FedEx his MRI scan from today to the Mayo Clinic, and then on to see the little kids and hang out there while Tracy went to the hospital.  Sorry I missed you, Bill!

Tracy said that he's ever-so-slightly more alert -- the steroids at that dose took a few days last time (at St. Mary's in Rochester) to kick in.  Hopefully it doesn't take that long this time, and hope they work!

Back to the highest dose of steroids - 24mg

Early results from the MRI are in - no change from late July. I've got the CD in my hand and going to run it over to FedEx to overnight it up to the courier service in Rochester. That way, our neurologist at Mayo Clinic can review it hopefully as early as tomorrow afternoon.

Just learned that they upped the steroid dose to 24mg/day - the highest dose you can get. Apparently the doctors are with us in thinking that drastic measures need to be taken to get him back responding to us and hopefully coming back around.

He's eating a bit today, and going to stick to soft foods for the time being.

Monday morning update; MRI Today

Some days it just feels like a Monday, doesn't it?

Dad was evaluated this morning by the "normal" crew of his doctors (not always on the weekend staff).  They're not happy with how he's doing, and don't feel that his being tired from being up in the chair is all that is contributing to his tiredness.  They're worried about how Dad is doing, so they are changing a few things:

• On Friday when Dad was doing better, they had taken him off of the IV Steroids and gone back to the pills.  They are restarting the IV steroids today to get the maximum benefit out of the steroids.  There's a small chance that going from IV back to pills on Friday was part of the decline we saw over the weekend.
• They are asking anyone in the room to help push fluids - Dad needs to drink more.  Iced tea, Diet Coke, water, shakes. . .Need to increase his fluid intake.
• He's having an MRI done today (as previously discussed), but now they are looking to see if there is further increased swelling causing significantly more confusion and weakness.  We will be overnighting the MRI CD up to our doctor at the Mayo Clinic, and hopefully get a report from them on Tuesday or Wednesday.
• His labs drawn this morning look "okay" - but not great.  Not sure of the details on that statement, but will find out more this afternoon.
• They are putting a pressurized stocking (a TED hose) on Dad's left leg and keep it elevated for the swelling.  They think this is due to the large clot in his leg impeding the blood flow, sitting up in the chair for the first time in a while, and inactivity.  

The oncologist is definitely worried about him.  He has lost so much muscle mass, and was concerned about his cognitive state.  We all are.  We're not sure when the move out of ICU is yet, but chances are that when he goes down for his MRI, they will move him to the new room when he comes back up.  I'll post an update when we get the results of the MRI.

End of Day Report: Not as good, still in ICU

Just returning from visiting Dad.  Tracy was up there most of the afternoon, and Mom and I went up for the evening.  Dad's just not looking very good.  He's very, very sleepy.  He's not always following commands that have to do with his left side.  His left leg is VERY swollen.  Blood pressure is down a bit; pulse is very high (for him) at 75; and he's just not wanting to eat.   He's also got me concerned on his output of fluids as well as that's significantly changed since I saw him Friday.

The plan is still to get him out to the floor tomorrow, but not sure what's going on.  Lots of little things are adding up to not so good.  He's got us concerned again.  He was up in the chair for six hours today, which would make him very sleepy.  But a few other things going on wouldn't be impacted by being tired.

Keep thinking positively.

Another stable night, so out of ICU today

We had a good laugh yesterday (you seek out those moments in times like this).  As I was reaching for an ice pack, nearly a half-dozen items started falling from their precarious perch on other frozen goods in the packed freezer.  I couldn't stand it anymore.  I cleaned out the freezer.  I found something that has made us laugh again yet this morning:  some frozen red and green peppers that were dated 10/12/99.  That's right.  They were frozen BEFORE Mom and Dad even moved into this house.  The peppers were included in the move.  Mom is defending herself in saying that she probably just re-used the bag.  Looking at the peppers closely, I can guarantee that they were every day of 10 years old.  

Last night, both Mom and Tracy said Dad didn't look nearly as good as he did the day before.  Hoping it's just because he was so worn out from the move to the chair and sitting up.   He was pretty confused, exceptionally tired/worn out, and just overall not doing as well.

His nurse this morning said that he had another very stable night with pretty good sleep, so they are talking about moving him out of ICU and onto the floor.  We definitely will miss the very attentive nurses and staff in ICU (and the beautifully remodeled room with a couch and room for us all).  Hoping that he remains stable enough to get the MRI that we want to get done this week and send back up to the Mayo Clinic for evaluation.

We're going to take a bit of a break this afternoon, and instead of enjoying this gorgeous weather, we're sneaking inside a movie theatre to go see "UP!" - the Pixar movie.  I've seen it, and I can't wait to take a few kids to see it as well.  Mom is going also. . .Hopefully both Emily and I can sit that long without needing to get up and walk around.  A good test for us both.

Up to the chair

Dad made it up to the chair (with a LOT of help).  He sat there for quite a while, and reclined even.  But now he's exhausted, and pretty confused.  Not surprising, since that's pretty much more activity he's had in a week.  

They started breathing treatments every six hours for him - more as a preventative measure against pneumonia and bronchitis than anything.  We were happy to hear those were initiated.  We don't need him to get an infection after all of this.

Mom is heading up now to have dinner with him, so if there is any additional news, I'll update once she returns with the report.

Small, yet encouraging, steps

Dad had a good night of sleep again, which really helps him tackle the day better.  According to his nurse, he did not have ANY apnea during the night at all.   That's a big relief to us all.  Hopefully that's gone for good.

In a surprising twist of events, the doctors now feel that the situation with the blood clots has stabilized somewhat without treatment, so they are going to try and get him up out of bed and into the chair today.  Not sure how that is going to go, but it's an encouraging sign.

He will be in ICU for a few more days, but Dad is definitely going in the right direction.

I'm not likely to make it up there today (and Dad does NOT know about the accident, so please don't tell him - he has enough going on to worry about that), as I'm enjoying my mattress of ice bags on my back.  At least it's a beautiful day in Omaha with a cool breeze.  A nice, relaxing day.

Pretty good day, although had some bad luck on Dodge Street

(for those that live in Omaha, I crossed Dodge street, on foot, four times today from the shoulder to the median.  I don't recommend it.)

I had big plans to write up a summary of the day, but the trip home from the hospital today disrupted those plans with an eight-car pile up on Dodge Street.  Long story short, Grandma and I got hit from behind in the VW Beetle (the car and Grandma remain relatively unscathed, but the muscular structure in my back is another story).  We'll be okay, I'm just going to have a bit more tame of a Friday night and Saturday than I had planned.

Dad had a good day.  He was joking, somewhat sharp-tongued (in a good, sarcastic way), and ravenous in hunger.  You know how a puppy will continue to eat a bowl of food even beyond when they're full?  That was Dad today.

They're going to keep him in ICU for at least a few more days, and the docs all like his progress.  We found out today that the neurologist following him at the hospital (new to Dad's team this week) was a resident under our neurologist at the Mayo Clinic.  Nice connection.

Anyway, there were anecdotes, visitors, a story from Father Dan about how Dad has met so many of the parishioners at the church because he'd often wander beyond the main sanctuary and needed someone to guide him back for the service, and even the insurance agents when I was filing a claim today wanted to know how he was doing.

He's still pretty confused, but he's heading in the right direction.  Me on the other hand?  Well, I may have just bought myself the weekend off despite not asking for it.  As my friends Elaine and Jamie might say, "Karma, let's stop the pay-in and let's start seeing the pay-out."

Have a good weekend, and I'll update when I can.

Heading in the right direction this morning

A pretty uneventful night, and I think Dad got some really good sleep. He was still having periods of apnea, where his oxygen saturation levels would drop below the level they want them, so he was placed on oxygen for the night while he slept.

The assessment at 4AM found him pretty confused (he thought he was at a car dealership, and even asked the nurse what dealership she worked for), but stable. He sneezed twice during the night, which induced huge panic in me in the room (since he is supposed to stay really still), but everything was okay.

This morning he's quite a bit more alert, sounds stronger, and all of his labs are normal. One of his doctors came in already, and was pretty pleased with where things were today when compared to yesterday. They're even going to allow him to take a step up from chicken broth and have a bowl of oatmeal this morning, along with some apple juice. It's been ordered, and cannot get here fast enough for Dad.

Dad's primary care physician indicated that they were going to consult with the Mayo Clinic crew to see if there's any alternative treatment they would give for blood clots, but for now it's just time. It may take months for the body to absorb the clots in the lungs, and the filter put into his vein yesterday morning should catch the big one in his leg. He was reassuring - so this morning is starting off much better than yesterday already.

Tracy put up with the ice machine and the snoring family members of another patient, while I tried to get a few hours in Dad's room. I found myself staring at the monitor for about an hour at a time, just making sure that the apnea (period of not breathing) didn't last more than 20 seconds when the alarm should go off. There were a few times where I actually got up to walk out to find the nurse when he took a deep breath. Ugh. Nearly three total hours of sleep for us both, which is more than we expected. We did have a good laugh this morning about my documented super-hearing (fact - I'll tell you the story someday of my processing to be a CIA employee. They're thorough) as Tracy could hear someone in the hallway sitting down in a chair (thinking it was the doctor we were waiting for). I didn't hear it, but then again, the hallway was to my right and my super hearing ear is on the left. We are also punchy this morning from a short night, so that made it even funnier.

Super foggy in Omaha, so a good day for Mom and Grandma to sleep in a bit. Hoping today is a bit calmer than yesterday.

Lots of visitors, things are winding down for the night

Thanks to all of the family and friends that stopped up today and tonight. This is a major piece of the support system that was missing in Minnesota earlier this year. It really, really does help to have that positive energy and familiar faces around. Thank you.

It really spiked the good vibes in the large family room here in the ICU. Much more comfortable chairs, big couches that fold out into beds, and lots of them to allow everyone to sit. Dinner was even sent up (Thanks, Wheelers!) to the hospital, and then Jenson's brought pizza over to the Huff's to hang with me and the kids (so Rich could come up and see Dad -- which really made Dad light up. He was really happy to see him). I got video of the kids saying "hi" to Grandpa, which also made him smile tonight when I got back down here. Sometimes it's the little things that make all the difference.

I just got Mom and Grandma down to the door, and got the car for them so they could go home and get some rest in their own beds. Both of them are just exhausted. Definitely a draining day, and yet not sure where it all went. Very happy to have Dad up here in ICU under a watchful eye. Tracy and I are staying tonight, and Mom is on speed dial if anything changes at all.

With the blood clots in his lungs, pulmonary artery, and the leg, they're trying to keep him as still as possible, off of food (so he doesn't cough or even if the food makes him feel nauseated - which could dislodge the clot in his leg), not sitting up, or anything. It's going to be a long several days to allow everything to just kind of take care of itself and not disturb the clots as they dissipate.

Right now, nothing has changed. We'll be thrilled if that stays that way for a while. Anxious to talk with the doctors early tomorrow morning.

Oh, and I packed my own diet coke in for Tracy and I in the morning. This hospital is Diet Pepsi only, which you know just doesn't fly. Everything is better with a cold Diet Coke.

Thanks again to all of you for the notes, thoughts and prayers. We don't want to get greedy, but please keep them coming. More tomorrow. I'm going to go grab some bedding and lay claim to one of the couches in the family room. There is a couch in Dad's room as well, so both Tracy and I have beds tonight. Not sure how much sleep we'll get, but at least we'll be able to put our feet up.

Good night for now.