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.