Hiccups Suck

Ever present today, besides his daughter, were the hiccups. Apparently this is pretty common after neurosurgery, but they don't know why. He was still hiccuping when I left, which made it hour 6 of solid hiccups. Hopefully he can relax and switch up the rhythm of his breathing a bit to stop the hiccups.

In talking with the on-call neurosurgeon as he made evening rounds, he was pleased that Dad had 30 minutes of "good" today. He said that was really encouraged with that, and that we should look for the same or maybe a little more time tomorrow. As Dad was barely keeping awake sitting in the chair for dinner, he said that the poor guy is probably just really fatigued, and sitting up and some occupational therapy this afternoon really wore him out. By the time dinner came around, he was in quite a bit of pain and almost too exhausted to eat.

I did escape out to the Saint Francis Peace Garden on the Saint Mary's campus, and it was quite peaceful indeed. Above is a picture that I did not take (I haven't downloaded the pictures yet). I do like my picture a bit better, but it's now downloaded yet. Plus this one had flowers in it. The flowers aren't quite planted yet, as Minnesota is coming into summer. I'll download it tomorrow. Despite being up at the hospital almost nine hours today, it didn't really feel like that long of a day. It is such a nice hospital, and everyone is so nice, that time just kind of passes without too much effort.

We did find out this evening that Dad's dear friend Dick Rae lost his battle with cancer this afternoon. Dad talked to him pretty much daily, and they were each other's support system. He's going to take the news really hard, and we're trying to figure out the best time to tell him. Our hearts are a bit heavier tonight for Mary Rae and their family.

Tomorrow we hear from social work, see our neurosurgeon (it wasn't his turn to be on call this weekend), and more rehab for Dad.

Glimmer of good before lunch; now back to really tired

When Dad got up after a nap and some pain meds, he actually seemed much better. He needed help still, but was under a lot of his own power. I was amazed. Nothing like some sleep and some good pain drugs to help out. After a good lunch and some more good pain meds, he was exhausted again and almost back to where he was yesterday.

He's getting some occupational therapy right now. She's tenacious and is not giving in to Dad's desire to just stay in bed. :)

Sunday morning report from St. Marys Hospital

Dad is about the same this morning, only a bit more pain. They've picked up the narcotics once again to try and get it managed (nothing like a little oxycodone to start the morning). He's sleeping now after a somewhat busy morning.

He had a pretty restful night according to his nurse. He had a rehab consultation this morning, and they're recommending in-patient rehab for him. We will talk with a social worker tomorrow to start the coordination with getting him back to Omaha and admitted directly upon arrival. Dad's brother Mike is helping Dad and Mom find a faster way to Omaha. More details on that as we get through the next few days.

After Dad wakes up from his nap and he has lunch, I'm going to try and get him out for a wheelchair ride outside. The weather here is quite beautiful today (although supposed to be windy later), and I think some fresh air would do him good. His nurse Kate has already approved the field trip. I've got the Peace Garden spotted as a good place, but not sure she'll let me take him THAT far away. I'll see.

Chances are about 50/50 that he'll be discharged and back to Omaha on Tuesday afternoon. More than likely it will be Wednesday or even Thursday. One day at a time. I'm happy to hear that he'll stay here for a few more days at least -- he's not ready to travel, and our neurologist will be back on Tuesday morning and will come over if we're still here. Any time we have the opportunity to see this doctor, it's reassuring and helps us get a better idea of what one of the best minds in the business has to say about Dad. He's been following him for over a year now, and we really like him and his approach.

I'm actually going to work from the room today as much as I can. Mom is back at the hotel where I insisted she stay and catch up on her rest a bit. It's just Dad and me until dinner, when I'll go grab Mom and come back up here.

More this evening to wrap up the day. Hope everyone is enjoying the weekend.

Seems a bit better after a long nap

Is it wrong that I'm starting to keep track of the things he says that make me laugh, but really not him? Tonight as he was being helped from the bathroom to his chair to eat dinner, the nursing assistant who was holding on tightly to one side was the target of one of his questions that just made me laugh:

"Geez. Did you work on a ranch?"

And then, as he was sitting eating, he showed me the right hand where he still has an IV port in and said (recalling a somewhat traumatic and painful removal of an IV yesterday):

"Whoever takes that out, I'm gonna hate 'em." Just as deadpan as he could say it. Mom and I split.

He's still hallucinating a bit - mostly due to the fact that he's not opening his eyes much at all in addition to all of the swelling he has from the surgery (on top of pre-surgery swelling), so when he does open them, the light causes a brief period of disorientation. Just now he said as Mom was helping kind of arrange his food so he could take some bites without causing too much pain on his jaw, and he opened up his eyes briefly:

"I was thinking my buddy was back; my sandwich was moving."

He has pressurized leg boots on that keep pressure and blood flow to prevent clots, and it really does feel like someone wraps hands around your ankle, and then moves up towards your knee. For two nights now, Dad has thought it was some guy under the bed. He now refers to "him" as his buddy.

He's still extremely weak on his left side (leg in particular), and still requires two nurses to help him get around. He will get evaluated for rehab, and may get discharged from the hospital and into an inpatient rehab for a while. He's doing better, but still confused and so weak on his left side that he really can't stand on his own. We will look into facilities in Omaha, and work with a social worker on Monday morning to start coordinating the care. Not sure yet when he will get out, but he does seem to get a little better.

Mom and I may try to escape for a movie tonight - but the pace at which dinner is taking Dad, not sure we'll make it. Patience with the patient. That's the motto for the day.

Really tired today, but resting more comfortably

I think the past week is starting to catch up with us all. Mom and I didn't make it out of the hotel until 10AM this morning after a late night last night leaving the hospital, and then doing laundry until after midnight. When we got up to the hospital, Dad had already been cleaned up and shaved (!!!), had breakfast, and was taking a nap. It's nearly noon, and he's been sleeping for almost two hours.

His pain seems to be better managed today, and he seems a bit more comfortable. He's still really off balance when walking with assistance, and still is confused (he knew he was in St. Mary's Hospital, but in Colorado). This can take time for the swelling to go down and for his body to adjust to the new distribution of weight in his head.

We did talk with his nurse this morning of maybe needing to have him in a skilled rehab facility (preferably back in Omaha) for a while as he continues to get his strength built back up and bearings returned. We're checking to see if he can fly home, as a drive home to Omaha in this state would almost be too hard on everyone. Should know more about that later today after we talk to the doctor again.

We're going to explore more of the hospital this afternoon. There's a really nice meditation center, as well as the children's area they did with creating tiles from drawings from kids that were patients here. Supposed to be quite the sight. I'll take some pictures and post them if they turn out.

Hoping for a restful day for Dad after lunch and a short walk in the halls with his nurse.

Sometimes having your life saved hurts. A lot.

The end of Day 2 couldn't have come any faster. Dad had a pretty rough day, but by the time we left tonight, he was maybe just a little bit better. He had a shower today (which he doesn't remember), but no shaving just yet. His right side of his face and jaw are incredibly sore from where they made the incision and the muscles of his face are revolting a bit. His sense of time is still way off, and we're doing what we can to protect all of you from middle of the night phone calls from Dad to check in.

The new message we're trying to get into some of the space he now has in his head is that this surgery saved his life. Of course, I'm getting a lot of credit I don't really deserve but at this point I'm taking it all. Apparently in Dad's mind it was my idea (and mine alone) to come to Mayo's. I may not have given him four adorable grandkids, but I saved his life. That has to be worth at LEAST the keys to the beetle convertible someday, right? :)

No "sitter" in the room tonight - the nurse is going to extend a little more trust and let Dad have the room to himself tonight. What he may not quite realize is that about ten feet away is the nurses' station, where his nurse for the night will be sitting and keeping a watchful eye.

He did seem a bit better as we were leaving, and some chocolate ice cream and some hot chocolate were on the way. Hope he gets a bit more sleep tonight than last night, but only getting tylenol to combat the pain seems a bit medieval. They know what they're doing, though, and getting him off of narcotics was what they really needed to do for a lot of reasons I won't get into here.

Tracy reported tonight that there were neighbors stopping by the house tonight to check in on how things were going when she went out to just check in herself. Our dear neighbor Gene across the street was out pulling weeds. We can't thank you enough for all you all are doing while we're up here. Figuring out a way to say "Thank You" to everyone for all they have done may be our next biggest challenge, one we will be happy to tackle.

Here's hoping tomorrow is a little better, although Day 2 and Day 3 are tough according to Dad's nurse who has seen a lot of these before. She said that these days are really tough as the first full day there is still some anesthesia and good drugs on board to help fight the pain; and the muscles haven't quite woken up to the trauma. Day two things start picking up in the pain and discomfort department. Still no target on when he may get out of the hospital, but could be Monday.

One day at a time. And after a little laundry, this one will be complete.

They say "Day Two" is the worst - so far, they're right

Who knew brain surgery and coming off of pain meds could be so rough? They say the second day after surgery is often the hardest, and for once, Dad is following the textbook. He's having a pretty rough morning. They're trying to pull him off as much pain medication (other than tylenol) as possible to kind of wake him up a bit more, and he's having some issues with that. He has a bunch of swelling on the right side of his face and neck from the surgery, and is in quite a bit of pain from that. Eating is difficult, but the McDonald's parfait just went down well.

He's pretty confused and disoriented, and even hallucinating a bit. They attribute that to the swelling and the coming off of pain drugs. He pretty much looks and feels miserable today. Hopefully he'll be able to take a shower today and get cleaned up - that should help him about as much as anything, although it's sure to exhaust him.

Mom and I both feel like we hit a wall this morning going 100mph (apparently the last few weeks are catching up). I printed out the blog for him to read when he feels like catching up on the past few days, but so far, he's not ready for that. Still making progress. Today feels a bit like a step back, but apparently this is right on target for the healing process. Could be a long day for everyone.

Calling it a night - still can't believe the news

We're still finding it hard to believe the news we got today. Something we wanted to believe was possible, but after the last year, can the Dillons have that kind of luck?

Yes.

To prepare for what could be an interesting night for the staff on the neurology step-down unit, they moved Dad to a corner room right next to the nurses' station. There is a clear line of site into his room (and his bed) at all times. The bed alarm is on "high alert" - and when that alarm goes off, there is no mistaking that it should be taken seriously and get the heck out of the way as a few people are running down the hall NOW to make sure Dad doesn't get out of bed on his own. We also felt somewhat reassured that a care tech was in the room with his computer, basically blocking the doorway and just a few steps from the bed. He was going to be Dad's "buddy" for the evening and not leave his side. When Dad is really tired, he gets more confused, and even more convinced that he should be able to get up out of bed. There's no convincing him otherwise.

Mom and I are now back at the hotel and beyond tired. Uncle Steve left this afternoon as Dad was settling into his new room, and made it back to Nebraska without incident. We hope to do the same Sunday or Monday, just as soon as Dad is able to leave the hospital and travel. The next few days are just focusing in on getting Dad stronger and healing. 40 staples to close the incision, and some titanium screws to hold the skull back together will take a bit longer to heal for him than those that have never had radiation treatments. Keeping infection at bay is Job One now.

Be on the alert - Dad has been without a cell phone for a few days, and he's starting to scroll through the contact list (sometimes with his eyes closed) and dialing. He's pretty with it, but for the most up to date and accurate news, please refer to the blog and not Dad. . .at least not yet.

Good night from Rochester.

Pathology is back - we found our Miracle at Mayo's

A few things have happened in the past two hours worthy of noting:

• We met with the neurologist in the ICU who happened to be up on the unit visiting another patient, so he stopped over to talk to us for a bit. He thought Dad looked good, and did notice that his field of vision in his left eye seemed to be impacted a little, but that could come back over the next week or so. Overall, pretty minimal. He also said that if Dad's strength didn't come back before he was released from the hospital, they'd release him to go to some rehab, which can be done in Omaha. He said that he did not yet have pathology reports back, but that he'd be taking his computer on a trip over the weekend and would let us know when he heard anything. He said he'd be back on Tuesday, and if we were still around he'd stop over to see us.
• Dad was transferred out of ICU and up to the step-down unit without too much difficulty. He's now settled into his room and getting comfortable. He had a few pain pills and was really tired after the transfer up here and sitting up in a chair, so he's back in bed and nearly asleep.
• We were not settled into the room more than an hour when a nurse walked into the room and asked if we knew the neurologist who was on the phone wanting to talk to Roger Dillon's daughter. I said sure, and my heart sank a bit thinking he got the results back from pathology. I got on the phone and I asked, "Is this a good phone call or a bad phone call?" He confirmed with an elated voice, "Good."

He said he ran into the pathologist on the way back down to his office, and the pathology confirmed the exact same diagnosis as the biopsy did last week - treatment effect. He said that that was ZERO evidence of high grade tumor anywhere in the sample, which is HUGE news. He said that he thought this all along since Dad looked too good to be having high grade tumor taking over. He also said that they are seeing a few cases like Dad's where a certain genetic makeup plus the temodar (chemo) plus the radiation at the same time are causing a dramatic treatment effect. He confirmed that what we did yesterday was the EXACT right decision to open up some more room for swelling and further treatment effect (the damage can have an extended ramp time before it peaks, but once it peaks it's done).

The neurologist also said that Dad should see some abatement of his symptoms over time (didn't say how long), and should see some of that pressure on his brain stem and the rest of his brain relax. Right now, he said there is NOTHING to treat him for, and that once he's dismissed from the hospital (hopefully this weekend), we should take him back to Omaha and let him recover. He said they want to closely monitor him, and he'd like us to be back at Mayo's in a month for a follow up MRI and appointment. He mentioned that once he's recovered from the treatment effect, he could see a prolonged period of time without any new symptoms or problems. How long that is, no one knows.

We are all ecstatic with this news, and are so thankful that we came to the Mayo Clinic for this treatment/surgery. It's almost unbelievable that the pathology actually aligned with the gut feeling of the neurologist all along. It hasn't had a chance to sink in yet, but Mom and I will be walking across the street for dinner (lunch was skipped) and likely a few beers to celebrate. I'm pretty sure I'll be finding myself inside of a church more often going forward.

We found our miracle at Mayo's. I'm ready to make the Mayo Clinic the primary beneficiary of my will. And I'm only half-kidding.

Sitting up in bed having a little lunch - pain getting better

I'm sitting in the room watching Dad take in his first solid food. He's pretty lucid, but some things are throwing him (time of day and the year -- he thinks it's early morning and 2010), but everything else seems really good. Applesauce and pudding, along with some turkey and potatoes is on the menu, with focus on applesauce and pudding.

Pain is managed pretty well right now, but he still hurts quite a bit. At least he's not miserable like he was most of last evening and last night. They got him up into the chair this morning, and he's very unstable and required two nurses to get him up. That's something they're watching and will talk to the doctor about later today if it hasn't improved. He's able to move both legs independently and raise them up and hold them, so they're not too concerned.

Still no orders to move out to the step-down unit, which is just fine with all of us. Having him watched so closely is definitely reassuring when the nurse sits literally right outside of his room looking in through a window from her chair.

Dad is taking part in conversations a bit, and even chiming in about how some lottery winners (we did NOT win the Powerball last night, by the way) get into trouble because they spend too much up front.

Overall he's doing pretty well today. Good to see him sitting up and eating a bit. One more step closer to normalcy.

Painful night, but looking good this morning

"The Turban" is on the left. It's now gone, however, which is a good sign.

We're all up here this morning, and have talked with the surgeon. The surgeon is precise in everything he does, including showing up at exactly 8:00AM as he said he would. Dad had a pretty pain-filled night (ranking his pain at "35" on a 1-10 scale), but had plenty of percocet and morphine to try and take the edge off.

I did get a call at 3:45AM (which scared me when I saw that call coming in thinking that the hospital doesn't call you in the middle of the night for good news). Physically and neurologically he was doing just fine, but he was in a lot of pain and insisted on calling me. He was telling me to assure the nurse that he was right in asking to page the anesthesiologist to have him put to sleep so he could get out of pain and to sleep. I convinced him that was not the the thing to do, and that I'd talk to him until the morphine kicked in. That lasted about 30 minutes, and he drifted back to sleep around 4:20AM. Not the same could be said for me, when I finally went back to sleep a bit after 5AM.

We got up here and the turban is off (so a picture from my iPhone from last night will have to suffice - not quite the quality from my good camera), and he had the drain taken out. He will likely move to the step-down unit for a couple of days to kind of get his bearings and still be watched pretty closely. We won't know pathology results for a couple of days, but we could be coming home Sunday or Monday back to Omaha.

The surgeon said this morning that all looked good, his incision was "healthy," and that what they took out yesterday would help prevent the swelling from causing more problems, but wouldn't necessarily improve things a whole lot. But we will know more as the week progresses. Hard to believe that some good won't come from the pressure being taken off. Too early to say. Next steps in treatment will be decided once pathology is back.

Time for breakfast here at one of the largest hospitals in the world. Found out last night from the night nurse there are 130 adult ICU beds in this hospital alone. That's just amazing to me. Huge place with very specialized care in volume. Glad we're here.

Resting pretty comfortably in ICU - final post of the night

Dad looks remarkably well considering what he's been through today. Talking with his nurse when he first hit the ICU, he said that Dad was doing fantastic and really, really well on all of their neuro checks. It was pretty hard to see him in so much pain (which is caused by the incision and the pulling back of the scalp to get to the skull/brain), but that finally got under control and when we left around 9:15PM he had been sleeping for about an hour. He was complaining of pain of "20" on a scale of 1-10, which was pretty hard to see him like that; but now that he's sleeping, the morphine is doing it's job and allowing him to be a bit more comfortable.

His color is really good, and he does indeed have a turban. I'll hold off on a picture until he's a bit more out of his morphine-induced sleep, but I promised him I would post a picture of him if he came out of surgery with one. I have kept all my promises, and don't plan on falling short on this one. He will have the turban on to protect the incision site as well as add some pressure (think of it like an ace bandage for your head) through tomorrow, and possibly into Friday morning. I'll take my camera up tomorrow and get a snapshot.

We all head back up tomorrow morning early to catch the neurosurgeons as they round on patients. I think we're all glad that this day is behind us, and that Dad did so well in the surgery. The next few days are going to be rough for Dad as he starts to heal, but the entire medical staff we talked to seemed genuinely very pleased with how everything was going.

I'll probably do a few updates tomorrow (morning/evening). Thanks to all of you checking in, leaving comments, sending emails, and leaving voicemails. We're getting them ALL, it's just hard to call/write everyone back. The blog is the best spot to get the most up to date information, and I'll do what I can to keep you informed. There are no cell phones allowed (or phones) in the ICU, so this is the best way for me to update a bunch of people at once so I don't have to leave the ICU room for too long. :)

Good night, from Rochester.

Into recovery at 4:55PM- talked to the surgeons

Whew.

Okay, so the surgery went well. We just talked with the neurosurgeon. They took a large piece of his right temporal lobe out, and the early indication was that there was no visual evidence of high grade tumor. The surgeon said he's keeping his fingers crossed that it shows that way on pathology as well, but it "appears" to be primarily necrosis.

He left plenty of room in there to allow for further swelling so that shouldn't be a problem moving forward. Dad was just starting to wake up, and was moving both arms and legs, so that was a good sign. He should be rolling up into his ICU bed in an hour or two.

Once again, we're cautiously optimistic at the early reports about the surgeon not seeing any high grade tumor. We're waiting officially for pathology, though, that should come in over the next few days as they look at all possible areas of the sample they took out.

More after we see Dad in his room.

Starting to close now - 4:30PM

Just got the call from the OR nurse - they are done with the actual resection and are starting to close. That will take about an hour to complete, and then off to recovery.

So if we try to plan (which those who know me at all, it's hard to function without a plan or at least managing expectations):

• Out of OR and into recovery around 5:30PM CST
• Out of recovery (assuming all goes well) and to CT Scan (to ensure no bleeding in the brain) around 7:15 or 7:30PM
• Up to his ICU room around 8PM to get settled
• We'll likely get to see him around 8:15 or 8:30PM

Dad has requested a picture of his "turban" bandages to be posted. I'll see if I can get a shot this evening or wait until he's more alert/awake tomorrow.

Okay, they've started (1:25PM CST)

Just heard from the nurse communicator assigned to our family. They started at 1:25PM PST. It will take about an hour to open up the skull and prep the area, another hour to close up, and whatever time they need in-between to do the actual resection of the brain. We're looking at at least 4:30 or 5PM before he hits recovery, and then another hour or two after that before he is moved to his room in neuro ICU.

In the OR - haven't quite started yet

Entered the OR at 12:32PM. . .still getting him situated and haven't started yet. Steve and Mom and I walked down to the St. Mary's Chapel. Umm, not quite a chapel. It's a full-blown church inside of the hospital walls.

St. Mary's has 54 operating rooms. and they are busy all of the time. I'll post a picture of the chapel shortly. Unbelievable.

Just took him down to anesthesia

Okay, so probably will go into the OR in 1-2hrs, and then another 3-4hrs from then until he's in recovery. I'll keep the blog updated as milestones are reached.

Time for lunch for Mom, Steve, and me. We skipped breakfast - but didn't mean to. :)

Report time was 8AM -- it's now 11am and still waiting

Well, we're all hanging somewhat comfortably in the pre-op waiting room. The nurse finished up all of her evaluations a couple of hours ago, and said "now it's time to wait." Dad is the second case today, so once the neurosurgeon is wrapping up on the first case (which honestly could be noon CST or later), they will come pick up Dad and take him down to anesthesia and then the OR.

Surgery will take 3-4hrs once he's actually in the OR. Likely late afternoon/early evening before he's up in the room.

Dad is still standing by the phone, waiting for any of you that want to take his place for surgery today. :)

Long day for all of us for sure. Rainy and gloomy outside, so even a walk outside is out of the question.

More as we learn more or as things start. . .

Surgery Tomorrow - report time is 8AM

Things are already going in our favor for tomorrow. The extremely early wake-up call has been relieved somewhat, with a report time to the hospital being 8AM. That means Dad won't likely be rolled into the OR until after 10:30AM, but it's a little bit easier on everyone when the day doesn't start at 4:15AM.

The Huffs left this morning as we left for our appointment with the neurosurgeon. It really was great to have them around for a few days. Uncle Steve arrived this evening just in time to join us for dinner at Michael's (Dad thought steak and shrimp sounded good before several days of hospital food, so that is what we did). He'll be hanging around for a few days to offer support, and as he put it, help shield Dad from Mom and I. :)

The appointment with the neurosurgeon went well, and I think we all walked out a bit more encouraged. Dad asked him if his brother were in the same situation, would he tell him to the surgery, and the neurosurgeon responded, "Absolutely. Yes," without hesitating a moment. He walked through the surgery, where they were going to make the incision (starting above his right ear, back to the back of the head and then up the midline to his forehead), and how much hair he was going to have cut. Just a single strip of hair about an inch wide all along the incision path. Everything else remains intact. The idea is to go in tomorrow and remove as much of the necrosis and temporal lobe where tumor is present as he can do safely. He wants to remove as much pressure on the brain stem and have the brain relax with more room.

Above is the MRI scan from last week (click on the image to make it bigger), with a frame taken to show just what they're thinking of doing tomorrow. Note: I do not have my neurology degree, but I have been paying attention in the clinic appointments. In the center is kind of a "mickey mouse" ears shape -- that's the brain stem. The two "ears" should be symmetrical. Looking at the picture, the one on the left is compressed. This is what is causing all of the physical and cognitive problems for Dad.

I was reminded today that for someone that is right-hand dominant, most of your speech, memory, vision, and coordination are stored on the left side of your brain. So thankfully, Dad is right handed. If he were left handed, they could not go in and remove what they're going to remove tomorrow. He wouldn't have been a surgical candidate if he were left-handed since this tumor/necrosis is on the right.

We got him pre-admitted into the hospital this afternoon, as well as additional ultrasounds of his legs to ensure that there were no blood clots (Dad's been mentioning a few times calf pain since coming off of the coumadin that thins his blood, so everyone wanted to be sure). Early indications were that there were no clots present. Great news there.

Back and forth to the clinic we went today - three times in all for appointments, vascular lab, mass and a chat with the priest, and then for me to pick up a CD of the scans that were done last week. I've driven more in the past three weeks than I have in the past four months combined.

I just talked with my Intel teammates, and they've crashed my house in Portland and are drinking my good wine after raiding the wine closet. A few are staying there tonight (Intel has done so much for me, that I'm trying to pay them back with a free couple of nights of lodging and some nicer surroundings than a hotel room), which brings much needed life to the house that has sat dormant and quiet for over three weeks now. Thanks, guys!

I will be posting tomorrow when I can. The surgery will go for 3-4 hours once he gets into the operating room, so as I hear things I'll try to update the blog. Thanks to you all for your support and checking in. It means the world to the entire family.

Until tomorrow. . .

Reinforcements Arrive: Family and Fresh Air

When Tracy and Rich found out that we weren't going to be making it back to Omaha for the Memorial Day weekend, they packed up the car and drove to Rochester to be with us. What a difference it makes to have reinforcements and support from Tracy and Rich, and of course the energy of four kids under 7 on their first big vacation since Disneyland back in January 2008.

The Towneplace Suites turned out to be a fantastic hotel for the kids with what may be the best hotel pool EVER. Water slides, hot tub, kid pool (with slide and water toys), have occupied three of the four from early mornings until late evening. All three left the pool tonight basically asking for bedtime. We were able to secure the room right across from us for the Huffs, and that has been nice to be so close.

We had a good day today. It was beautiful weather, and we found a state park and had ourselves a good old fashioned picnic. Emily even raced around in the field for wildflowers to adorn the table while we ate. Fresh air did us all good - and we pretty much spent the entire afternoon and early evening outside. Dad seems a bit better today and a bit more stable on his feet (could be due to the increased steroids kicking in, but I think it's largely in part to the grandkids hanging around and a solid dose of fresh air and sunshine). Dad and I made a quick detour to St. Mary's Hospital for a quick visit with the chaplain, and apparently we made an impression on the Irish priest, as the chaplain on duty said, "You're the ones that met Father Byrne earlier, right?" I think we've now met most of the chaplains on duty here in Rochester in the Mayo Clinic system. All very nice folks, as you might imagine.

We will all be sorry to see the Huffs leave Tuesday morning, although appointments kick back in Tuesday and surgery is Wednesday. We still have a full day tomorrow to enjoy, however. It is supposed to be nice weather again, so we'll likely find another park with picnic tables, wildflowers for picking, and playground equipment for the kids. And I'm positive there will be more time in the hotel pool. The three older kids absolutely adore the water, and little Sam (who is 2 1/2) loves to just kick back and relax and kick while he has his life jacket on. And then goes down the big slide with Rich waiting to catch him. Emily had us laughing with a story from breakfast. She saw a man with a bandana on his head sitting at a table across the way. Without missing a beat, she pointed a bit and said, "Arghhhh! Pirate." One never knows what might be said from that little girl. Big laughs on that one from everyone today, including Dad.

A good old fashioned family gathering with focus on just spending time together. Nothing fancy, but it's all we needed. While being at the Mayo Clinic is absolutely the place we want to be, it is difficult to be away from family and friends in Omaha. We hope to be back there early next week after Dad recovers from surgery.

Happy Memorial Day to everyone, and next post will likely be Tuesday after our appointment with the neurosurgeon to talk about more details about the procedure on Wednesday.

Wind taken out of our sails today

The roller coaster ride continues. We all want to get off.

This morning we went in for the PET Scan. This was done to make sure that the biopsy completed on Monday didn't miss any of the most active parts of the tumor. We were filled with hope on Wednesday when the biopsy came back as showing treatment effect and only grade III tumor. We were cautiously optimistic for a reason.

The PET scan came back today indicating a high degree of tumor. According to the neurologst, this is very unusual, but not unique. They've seen it before, but not very often.

So this is what we know - although at this point we really don't know anything for certain. There is treatment effect/necrosis. There is grade III tumor in there as well, but less aggressive than last year. And "something", likely Grade IV tumor, lit up the PET scan like a Christmas tree today, mapping exactly to the MRI scan where suspected tumor was. We have conflicting data, but the PET scans have been known to show false positives (meaning it's wrong), so the following options are on the table:

1. (recommended) Do the surgery. This would be a craniotomy to be done in the hopes that this is still necrosis, and that a bunch of the dead tissue could be suctioned out and make some room. If it is tumor, they can take out what they can safely (not much based on the reports), but at least try to get a better sample for pathology to grade it a IV and get us into the best new treatments possible. Dad would be in the hospital for several days, and there are risks of losing some of his vision, some additional weakness on his left side, and potentially other risks as well. Avastin (or clinical trial drug) would start about three weeks after surgery. Surgery has a chance of doing some good, which is why it's recommended. Surgery is currently scheduled for next Wednesday AM.

2. Go home and start Avastin and chemo combo immediately. If this is necrosis, this would do not much for him, and he would have missed out on the opportunity to get rid of a lot of the tissue that could relax his brain and allow him to regain some of the function he's lost.

3. Do nothing. The neurologist said today that he will tell us when he feels it's time to "quit" trying treatments and let things progress without any intervention. I really don't feel that this is an option, but it was an option given to us.

I think we're going for option one, but there's a lot of discussion to happen this weekend. The neurologist strongly suggested that we stay in Rochester. There's been a decline in Dad's cognitive and physical abilities just in the past week, and the doctor didn't want us to get all the way home and not be able to make it back to Rochester if that's really where we wanted our treatment for Dad. And we do.

Tracy, Rich and the kids are heading North tomorrow morning and will join us for the Memorial Day weekend. I very much look forward (as does Mom) to having some additional support around. The past week has been trying and quite stressful -- including htis morning where Dad "escaped" the room and left us for about 20 minutes. I finally found him in the lobby, but how he got there or where he was the three times I checked the lobby, I don't know.

There is still a chance that the PET scan was showing a false positive, and that this is still radiation necrosis/treatment effect. Please keep that thought and nothing else in your heads this weekend when sharing thoughts, prayers, and good vibes for Dad. We are thankful to be in one of the best places in the world for this type of treatment/surgery.

A bit longer day than expected, but ended up okay

After the whirlwind of a week we've had, getting the good news last night led to a pretty good night's sleep. Not quite restful enough for Dad, unfortunately. He was extremely tired, confused, and very unstable most of the day. Even took a tumble after the shower and bumped his head. With his recent surgery, balance getting worse, and just overall extreme fatigue, we wanted to make sure he didn't have a bleed in his brain.

There were a series of phone calls to the neuro ICU nurse (they said to call if we had a question, and they didn't hesitate to talk us through what we should do), the neurologist, and our own common sense of what was going on. After quite a few conversations, we decided to keep Dad in bed asleep (when he's tired, he's just a completely different person and all of the problems are amplified) and see how he was when he woke up. In the mean time, I ran down to the Mayo Clinic to get a new prescription. When I got home, he was a bit better. . .but still not very stable. We're hoping the good night of sleep tonight before tomorrow's PET scan will help.

One more early morning - we leave at 6:45AM for the test - and then we take off for Omaha again. Looking forward to the long weekend, and I'm sure being in his own bed will help Dad get reoriented. We've had the poor guy in so many different hotel rooms, hospital rooms, and three round trips to Minnesota in the past two and a half weeks, it's no wonder he's confused.

No word on when we might be back up here for surgery, but likely late next week or early the following week. In case you're wondering, the new Pilot has 2,500 miles on it already. This is one way to break in the new engine. One more trip (and counting) to Mayo Clinic in the near future.

Dad's in bed now, and I'm pretty sure Mom and I are not far behind. Have a good long weekend!

We're shell-shocked by positive news today

For the past few days, we've all been bracing for the worst possible news. We had some indication Monday after the biopsy that the tissue samples gathered during the biopsy showed tumor. Today talking with our neurologist, he shared some incredibly encouraging news. I actually uttered the words, "Are you kidding me?" when the neurologist read the pathology report. Not my most articulate moment, but it was shocking in all the right ways.

While it is not fully definitive, the biopsy showed that the area biopsied was necrosis/treatment effect, and NOT glioblastoma (grade IV tumor - worst kind). Let me say that again (even in bold font)- it did NOT show grade IV tumor. The pathology report said that there were tumor cells in the samples, but that they were less aggressive than his biopsied tissue last summer, less proliferative, and less cellular. The treatments appear to be working.

Let me give you a moment to let that soak in. . .

So, the decline we've seen with Dad's balance, cognitive status, and walking gait is currently being attributed to effects of the treatment. Not an aggressive tumor. The doctor has ordered a PET scan for Friday that will further confirm this diagnosis, or it could perhaps light up an area not biopsied, which would indicate that the samples received were not the most active part of the growth area. If (and we're still cautiously optimistic) this is effect of the treatment, they would schedule surgery for next week or so to go in and "suction out" the dead tissue to relieve pressure and make some space. This is not the invasive and dangerous surgery that was ruled out to resection part of the tumor. This is another minor surgery (one can never really say minor surgery when the brain is involved, though) to go in and kind of clean things out a bit and let Dad's brain relax and have some space to stretch.

The doctor also tripled his steroids to help try and relieve the swelling. We should see a difference in his energy level and fatigue within a day or so. Dad is having a hard time letting this all soak in, but just as he was going to bed I think it started to hit him a bit (in a positive way). I promise you there have been tears of relief and joy shed across the family this evening. We're cautiously optimistic (the PET scan on Friday could show us something different), but our neurologist took me aside and said that in his gut he feels it's treatment effect. And that's why he did the biopsy.

Best end to a day we've had in a long time. Such a roller coaster of up and down emotions (including today of being really down bracing for the bad news, and actually having Dad use a wheelchair because his balance and stamina were poor), but I'll take an end to a day like this any time. We all would. The doctor told mom as we were walking out, "Hang in there." She could have kissed him.

I'm ready to go back to talk to the Irish priest that we saw today who provided the blessing and pack him along with us in the Pilot back to Omaha. We have a lot more to discuss.

Right now the plan is to get the PET scan on Friday, and head back to Omaha Friday late morning. Depending on the results, we would likely come back next week for surgery to remove the dead tissue after talking with the surgeon again.

Hope. We have further reason to hope.

Out of ICU, back at the hotel

After three separate trips to the pharmacy to pick up some pain medication for once he was out of the hospital, we got Dad back to the hotel. He was ultra-tired, even after a long nap in the ICU without being hooked up to any of the monitoring equipment - no beeps or alarms! We cannot say enough about the care he received at St. Mary's Hospital once again. His nurse this morning was so accommodating and so genuinely nice. She truly was one of those "silver linings" in a hard couple of days.

A glimmer of "healthy" Dad as we were loading up the car at the hospital. He wanted to help me put Mom's scooter in the car. Thankfully there was a big, burly hospital worker there who "bounced" him away and put him in the car safely (his job is to ensure safety for patients as they enter or leave the hospital), and then helped me get everyone and everything situated.

Dad came home and immediately hit the bedroom for a long nap. He was pretty confused and not really too with it there for a while, and even after sleeping the whole afternoon, he's still a bit unstable on his feet and not quite sure where he is (although he just answered correctly that we were in Rochester in the same hotel where we were last week - so that's huge progress). A little bit of pain flaring up a the surgical site, so we've dipped into the pain meds a bit.

Tonight's dinner will be by special request - an omelette cooked by yours truly. Breakfast sounds good to him, so that is what we shall have. It also allows us to hang out in the room tonight and not get out and about too soon after getting out of the hospital. He's not super happy with me right now as I strongly "encourage" him to shave, brush his teeth, and get ready for dinner. Tough love.

Hoping we can keep things somewhat calm throughout the night and through tomorrow afternoon. He is going through his phone contacts and calling a few of you - so if you get a call, please read the blog for the most accurate updates. Things are a little fuzzy right now.

More tomorrow after we meet with the neurologist. Time for dinner and a little "American Idol" for us all.

Looking like a new man after a shower - getting out today

We finally got to talk to the neurosurgeon last night just before 9PM. All went well with the surgery, and they were able to get four tissue samples from the surgery site for the pathologist. There was just a little bit of bleeding on the follow up CT scan, but nothing to be concerned about. Dad is passing his neuro exams with flying colors. We're anxious to get started on treatments.

After warning the nurse as we were leaving that when Dad is tired, he tends to get a little obstinate about getting out of bed, they were able to secure a poor soul to sit in the room and try to keep Dad in bed overnight. We found out this morning it was a bit more challenging than perhaps they realized. Apparently Dad was a bit impulsive last night in wanting to just all of a sudden get out of bed. We haven't gotten the full story yet, but there were at least two escape attempts, one of which was almost successful. Dad made the night shift a bit more exciting than they may have wanted.

This morning he is looking good. He was up sitting in the chair when we walked in, and had almost all of his lines removed except for one IV that they will keep until we get ready to walk out the door. He didn't get much rest last night with all of the alarms (including a bed alarm that alerts them when someone is getting out of bed without help), so he's pretty tired. Not really in pain, though, which is a nice change from yesterday afternoon. He's on tylenol - hard to believe that's all after what he went through. Then again, the brain doesn't feel pain, so it's just the surgical site that could give him painful reminders.

He did have a shower up here this morning, and just had a huge breakfast. He's going to take a nap now -- shower wore him out. When he wakes up, he'll shave and brush his teeth, and we'll take off for the hotel. All of the discharge orders are written, prescriptions are in the pharmacy, and we're on "our" schedule for leaving. So nice. And our nurses here have, as expected, been fantastic. Julie yesterday and today is so accommodating and nice; and Paula (the brave soul that took on Dad during night-time hours) was great as well. One thing about Mayo's - they hire and retain the best in the business.

Once in the hotel today, I think we'll all take a nap. Long day followed by a short night has left us all pretty tired. We will meet up with the neurologist tomorrow who will talk to us about next steps. Best guess is we will travel back to Omaha Thursday morning.

More tomorrow after we meet up with the neurologist.

Still waiting on the neurosurgeon - Dad's getting tired

Still no word from the neurosurgeon. Last time the nurse called, he was still in surgery (the same case he's been working since 9AM). It literally could be midnight before we see him. Thank goodness I packed the protein bars and some M&M's in the laptop bag. Dinner is served. :) We don't want to leave until we talk to the doctor. We've stuck it out 15hrs. We can make it a few more.

Dad continues to do well. He's starting to get pretty tired, though. He was looking for his money clip in his gown. I told him last I checked, there weren't pockets in those. First sign of being too tired since we walked in at 4pm. Not bad.

This is probably it for tonight for blog posts. Dad is going through iPhone withdrawal (no cell phones allowed in the ICU - at all), but he should be resting anyway.

"I made it," and a thumbs up. Dad's in ICU and stable

A quick post while they do some neuro checks. Don't know a lot yet, but I'll tell you what I know:

• We haven't talked to the neurosurgeon yet (he's in another case, so it could be a few hours yet), but Dad looks good. He's resting pretty comfortably in his ICU bed. He got up here around 4PM.
• He was thankfully asleep for ALL of this morning, including the application of the stereotactic headframe and MRI. All he remembers is a little IV medication to help him relax and the gas mask coming down onto his face.
• His color is good, he's talking, remembering his nurse from last summer ("the Rock" - which the nurses up here are all laughing that he thinks that), and the pain is starting to get under control.
• He was in the OR for about 90 minutes, and in recovery for a couple of hours. He was having a hard time getting his pain under control (it was stuck at an "8" - with "10" being the worst pain imaginable). Finally got it down to a "2," so they brought him to his room in neuro ICU.
• Pain was creeping back up into the "6" range, so he got a few more percocet in the hopes that would last a little longer than the IV pain meds.
• CT (we think) was clear, so no hemmorhage indicated. He's not confused (any more than normal), and is talking with Mom and I, and asking about Tracy and the family back home.
• He's off of his oxygen now, with his O2 saturation sitting around 99% - which is excellent.

More when we talk to the Neurosurgeon. He's really alert now and doing well. He wanted me to share with you all, "I made it." And a thumbs up.

11:22AM CST - biopsy started

All of the planning is done, Dad is situated, and they've started the biopsy. They should be getting pretty close to handing off some tissue to the neuropathologist for a quick look to determine if they have enough. That takes about 30-40 minutes. If it's enough, they'll close and we'll get to talk to the doctors soon. Best guess is he'll go to recovery around 1PM CST assuming they don't need to go back for more tissue samples. Which would put him up in his ICU room around 2 or 2:30PM.

Our nurse communicator (seriously, such a great service) called us within a few minutes of the biopsy starting, so we expect to be called again when things are wrapping up. I'll continue to try and keep you updated. My computer refuses to connect to the network here, so I'm at the mercy of the waiting room computer being available.

Now in the family surgery waiting area. . .

For some reason, my laptop will not connect to the wifi network here at the hospital (others are having problems, too), so I've latched on to the Mayo computer for a quick update.

We saw far too early this morning (4:15AM - yikes), but we made it to the hospital at 5:30 and made it through the patient admissions process without any hiccups. Dad was pretty nervous - and I think would have liked it if I would have turned the car around. The escort came up for him around 6:45AM (side note: the escort has worked here 35 years, and walks around 10 miles per day walking patients/wheeling patients to the OR), and per the message board Dad is still in the surgery holding area for patients.

The nurse communicators are starting to come up and talk to families giving out room numbers, talking about where they are in the process, etc. Really nice service. They're connected to the OR and will get paged when there's any updates to give the family. There's also a computer screen with Dad's random number that we can watch and see when status changes (from admissions to MRI, to the OR, in Recovery, etc.). Got Mom one of the recliners in the waiting room (a coveted spot when a long day awaits), and already have breakfast out of the way.

We should get an update early afternoon and get to see him once he's in his ICU room. I'll update when I can, but if I can't get connected, it likely will be this evening before I update the blog. I promised Dad that I'd keep everyone posted today, so I intend to keep my promise.

More later - thanks for the positive thoughts and prayers today as we are going to be one step closer to the right treatment.

Has it seriously been a year?

It's been one year since Dad was diagnosed with a glioma in his brain. There are times that it feels like time is standing still, and other times where it's hard to believe a month has flown by. A lot has happened in this year (the following is not inclusive):

• 60 blog posts, 3247 visits by you all, 489 unique people following the journey
• Five trips to Mayo Clinic in Minnesota
• 33 radiation treatments (completed in September)
• 6 weeks of chemotherapy, and then monthly doses to keep the tumor at bay
• More visits to the ER than we care to remember (Methodist, Lakeside, Urgent Care)
• Stereotactic brain biopsy to figure out what we were dealing with
• Nearly two months where Dad just slept and not much else
• Strength training, physical therapy, home health nurses
• An ambulance ride when a bad reaction to the anti-seizure medication resulted in dangerously low sodium
• Hospital stays for the first diagnosis, low sodium, blood clots (legs and lung), biopsy, and extreme fatigue
• Mom back behind the wheel as the only licensed driver in the house
• Upgrade to the home phone to have unlimited long-distance
• 8 round-trips from Portland to Omaha in 2008, 3 round trips from PDX to Omaha in 2009 (Southwest Airlines gets my vote as best airline with flexibility and not charging me to change the date on my tickets - which has happened a lot)
• One fantastic round trip from Omaha to Portland for Mom and Dad in March 2009
• Convertible rides, pushing the grandkids on the swings, greeting a new granddaughter
• A return to mowing the lawn (with the riding lawn mower) now that it's spring-time in Nebraska
• Never-ending kindness and caring from neighbors, friends, medical professionals, my team at Intel, and family to get through this all. All of the care packages, snow-shoveling, mail/paper pick-ups, phone calls, visits, cards . . .the show of support has been overwhelming. Thank you.

Return to Mayo's on Sunday for the early Monday morning biopsy. Dad should be in the hospital Monday night, and released to the hotel Tuesday. Wednesday is our appointment with the neurologist to talk about pathology results and next steps. Plan to return back to Omaha Thursday. I'll try to post nightly in Rochester on the blog as things settle down for the night.

Have a good weekend!

A request from Dad to post this picture

Grandpa is still enjoying time bonding with Kaitlyn.  She came out with Tracy tonight for her first photo shoot with Crazy Auntie Mary.  She definitely loves the sound of Grandpa's voice as she opens her eyes and tries to find him when he's talking to her.  It's very sweet.

Dad had a pretty good day today.  Getting a good night's rest seems to really help.  We made it in to see our favorite nurse Judy at the cancer center - always a bright spot in our day to be able to stop by and say hello (and take care of a few things as well).

I have new incentive to make sure that the riding lawn mower gets fixed soon.  Have you ever tried to mow an acre lot with a regular mower?  I'll sleep well tonight, for sure.

Last night Mom and I were able to get into the Elton John / Billy Joel concert at the last minute (literally).  We arrived into town from Rochester after 5PM, and we stopped by to see the Huff family, get dinner for Dad, and change clothes to make it down to the Qwest center.  We ended up with fantastic seats right by the stage (for about half price).  3 1/2 hrs later, the piano playing stopped after the song "Piano Man," and we did indeed forget about life for awhile (as the song says).  A great night.

Not much happening until Sunday when we drive back up to Minnesota.  Uncle Mike from California is coming in for a quick trip, so we're thankful to be able to be back and see him this weekend.  We may try to take in one of grandson Dillon's baseball games as well.  That's all for now!

More miles on the Pilot this week. Biopsy now Monday.

We're leaving the beautiful atrium of the Gonda Building and heading back to Omaha tomorrow (you read that correctly), only to return on Sunday for the biopsy on Monday morning now (May 18th) instead of Friday the 15th. Apparently the Friday schedule didn't work out for the neurosurgeon, who was trying to do us a favor before and scheduling us on a Friday. Normal operating days are Tuesday/Thursday for him. He's now making another exception for Monday AM, since National Guard duty is pulling him away on Friday and he can't get out of it. Go figure.

Had a decent day at the Mayo Clinic. Outside of temporarily losing Dad - who wandered out of the "patient nap room" - and working with Security and their cameras to find him again (which we did), we blew through four appointments in just 9 hours. We're all set for biopsy on Monday now. Since there is no need for us to hang out for six days in Rochester, we're heading back to Omaha tomorrow morning.

There are a lot more details to put in about the appointments today, but we're all honestly too tired to stand much longer. Suffice it to say that Dad is cleared 100% for biopsy and made it through all of his pre-op appointments. He'll be under anesthesia for the application of the stereotactic head frame (helps the doctor plan and biopsy exactly the area he wants using a stereotactic MRI exam to get the exact measurements), and we're anxious for results. Kind of a let down today that the appointment got moved, but there's nothing else to be done despite all of the efforts of the neurosurgery team.

This week is going to be as much about resting and getting some good sleep for Dad. No more 6:30AM Mass. I'll take him for lunchtime Mass somewhere. When he gets tired, not a lot makes sense for him and that just complicates everything.

That's all from Rochester for tonight. Probably not a lot this week for posting since not much will be happening (hopefully). I've nearly got the Driving Guide to Rochester from Omaha complete with all of the best gas stations, eating establishments, and scenic areas documented. Three more trips via the Mayo Corridor to fine-tune it. :)

Mac Daddy Suite in Rochester & the Omaha World Herald article

Five hours and 15 minutes after we left Omaha, we arrived at our hotel in Rochester. We had enough snacks and goodies from my friends at Intel, along with a bag full of the good stuff from the Swans, that we didn't have to stop for a meal.

We arrived at the hotel just after 8:45PM, and Dad was more than ready to go to bed. He "hit the wall" about 40 minutes outside of Rochester. He skipped dinner and went right to bed when we got into our room(s). We upgraded a bit since we are going to be here for at least a week. Two bedroom, two bath (with full kitchen and living room area). It's very nice, and will allow us a bit more flexibility in having meals "at home" instead of having to eat out for every meal.

For those that don't get the World Herald, here's the link to the article about Tracy and Rich:

http://www.omaha.com/index.php?u_page=2798&u_sid=10630781

That's all for now - early day tomorrow as we have to be ready to leave the room by about 6:45AM to grab breakfast downstairs and be at our appointment at around 7:30. It is going to be a long day, and I'm nearly positive that we all will be exhausted tomorrow night. Hopefully a few days of rest during the rest of the week before the biopsy on Friday.

More tomorrow. . .

Back up to the Mayo Clinic tomorrow

Grandpa sure does like to hold new baby Kaitlyn.  We were able to get three out of four grandkids in the photo today.  Sam didn't feel like he wanted to be in the picture.

The weekend sure did fly by.  Seems like we just got back into the Omaha Metro area and we're taking off again.  We have a full day of appointments on Monday (the Mayo Clinic is doing all of the pre-op physical and run-through with the anesthesiologist on Monday), and right now, nothing else scheduled until Friday early AM for the biopsy.

I'll likely update the blog on Monday night, but then rest up for the weekend posts.  Happy Mother's Day to everyone out there!  I'll post the article for the Omaha World Herald on the Huff's as soon as it's online.

Grandpa for a Fourth Time

Kaitlyn Mary Huff was born at 2:40PM Friday (May 8th), weighing in at 8lbs, 6oz and 22" long. Tracy looks and feels great, and all of the kids couldn't wait to hold Baby Sister when they came up tonight.

Grandpa was the first one to rock little Katie after Rich, and as you can tell, he was in all of his glory doing so.

We're thankful to be able to see the newest addition to the family on the day that she joined us. Perfect timing!

Watch for the article in the Sunday Omaha World Herald about Tracy and Rich and the kids. The paper was doing an article for Mother's Day, and Tracy and Rich just happened to be the ones selected for the feature article. I'll post the link to this blog on Sunday.

Eight hours of standing by wasn't enough

Dad and I saw 5:45AM wake-up calls (well, so did Mom), and were able to get up to the clinic early enough to get on the stand-by list for the thrombophilia consult. . .but we were greeted with a "I'm going to be honest with you, chances aren't very good you'll get in." Our chances were hampered by a doctor being out sick, making an already packed schedule tighter. We decided to stick it out. Wireless internet and fresh fruit from the hotel makes it a bit easier.

We stayed until just after 3:15PM.  We have this appointment booked for Monday AM, but it would have been soooo nice if we could get in today.

We just pulled into the garage in Omaha from Rochester about 30 minutes ago.  Short turnaround time (driving back up again on Sunday afternoon), but we made it.   Everyone is exhausted.  

More on the blog will be posted likely on Friday when Dad gets to rock the baby for the first time.  I'm going to go find a jackhammer to get my dry contacts out of my eyes and go to bed myself.

On the books for a biopsy May 15th - trying for earlier

Another VERY long day (and more roller-coaster like on the emotions than we would have liked), but we made it. I'm writing from the new hotel - it's more of an extended stay, apartment-like, with a kitchen and living room. We moved out of the Radisson to save a few dollars, and to be able to warm up some pizza for lunch tomorrow that's being delivered tonight for dinner.

The day started off in the huge blood-draw lab of the Mayo Clinic. It really is amazing how quickly and efficiently they process patients through there. Last time we were up here, the phlebotomist said they do over 1000 blood draws a day down there. Incredible volume, and highly skilled staff with all of that practice.

I then let Dad take a little nap in the leather chairs in the Gonda Building lobby while I perused through the Cancer Education Center. Another great (and free) service of the Mayo Clinic. There was someone there to work with me 1:1 to find out more information (digging into medical textbooks and gathering pamphlets) and helped me copy some pages from textbooks on radiation necrosis. I walked out with a bag full of information (including relaxation CD's, a DVD on Clinical Trials, and even coloring books for the kids).

After an awesome lunch at the City Cafe deli (voted best deli in Rochester - for a reason), we walked over to see the neurosurgeon. We got right in for the appointment, and were quickly met by the surgeon and his nurse/scheduler. Found out a few things, but pretty much right in line with what we heard yesterday:

• The surgeon confirmed that there isn't a clear indication on the MRI that this is tumor or necrosis (which is again, great news). He said if there was any degree of certainty on what this "something" was, he wouldn't do the biopsy.
• We definitely need to wait for the ultrasound of his legs (to rule out blood clots) and a thrombophilia consult prior to coming off his blood thinners. Dad had blood clots last fall, so they want to make very sure they are gone before taking him off prior to surgery. Ultrasound was completed right after the appointment, and Dad and I are going to go sit in the clinic lobby tomorrow on "stand by" in hopes of getting in before our scheduled appointment on Monday for the thrombophilia consult. This will make sure that Dad safely comes off the blood thinners prior to biopsy.
• Dad needs to be off the blood thinners for about four days until he can safely go in for surgery, so right now we're scheduled for May 15th. If we actually make it in for the consult tomorrow (think of it like catching a plane as a stand-by passenger), surgery will likely be moved up.
• Risk of hemmorhage is a big higher with this biopsy (if it is tumor, there's more blood flow to this area of the brain, increasing the risk of a bleed). But they're confident that they can perform a biopsy with as low risk as possible.
• Surgery to remove part of the tumor is too risky. Since the area of change has expanded into the occipital/parietal lobe and near some critical ventricles, more harm than good would come out of trying to remove part of the tumor (if that's what it is).
• We're going to try and see if the neurosurgeon that did the original biopsy last summer is available (he's off officially on some research, but this doctor was going to see if he'd like to join him).
• If this "something" is radiation necrosis, there are options for reducing swelling including hyperbaric oxygen treatments and steroids.

Keeping Dad positive (and there's no news we got today to be negative about) has been challenging. We're staying in for dinner tonight (pizza just got delivered), so I think it's going to be an early night for everyone. Back to Omaha tomorrow. Return trip to Mayo's is next week, just not sure when.

We're all excited to be able to be around for Baby Sister Huff's arrival on Friday. Things just work out, don't they?

More tomorrow upon our return to Omaha.

So you're saying there's a chance. . .

We just returned to the hotel room after a very long day (9hrs -- and we left the room at 11am). There was quite a bit of waiting, a lot of discussions with the billing department, verifying medication lists (who knew that could take nearly 90 minutes to do THAT?), neurological exams, and finally at the end of the day meeting up with our neurologist that has been following us all along.

Doctor walked in (after the neuro exam/memory test was completed), and asked how Dad was doing. Dad answered, "Well, the tumors growing and I want to find out what my options are." The doctor quickly corrected Dad and said, "Something has changed. We don't know what yet." He said many times that Dad is presenting too well (meaning he cleared the tests and exams with flying colors) to have it for sure be a tumor growing inside of his head. He kept saying, "This is why we treat the patient. Not the test results."

He's not ruling out necrosis (which is a result of treatments of radiation/chemo). He was very clear in saying that it still could be a very angry tumor (likely Grade IV), but that he really wanted to find out for sure before we decide the next path of treatment. Couple of reasons for that:

• If it is necrosis (which in this situation would be good news), there is no reason to put his body through the harsh chemo treatments for a Grade IV treatment.
• If it is Grade IV, there are treatments that are cutting edge only available to patients that are documented at Grade IV. Currently, Dad is on record as having Grade III. It's worth the risk to find out to allow him the best possible treatments.

They're going to be running tests tomorrow prior to meeting up with the Neurosurgeon - including an ultrasound to make sure that the blood clots from last summer are completely gone before he comes off of the blood thinners. We don't know yet when surgery would be (possibly Friday. Possibly early next week). If it's early next week, we'd head home for the weekend to meet the new baby in Omaha.

Doctor did say that surgical debulking of the tumor would not likely be an option due to the harm it would do in getting removed. He said he'd wait for the neurosurgeon to make that determination, but he felt that it was not an option. Biopsy and follow up treatment based on the results of that are what he recommended.

We feel somewhat buoyed by the news today. Before the appointment, it was pretty grim and we didn't think that necrosis was even an option. Apparently that even this aggressive of "impact" of necrosis is not so rare. He also mentioned that a toxic level of dilantin (anti-seizure medication) could be at play here, resulting in an increase in bad symptoms the past few weeks.

One day at a time, still, but after such a long day, it was so nice to actually have a reason for encouragement. Mayo Clinic is an amazing place, and the trust we have in the care here cannot be equaled. More tomorrow.

We've Safely Landed in Rochester

Well, we made it. Just over five hours north and we found ourselves in Rochester, MN, prior to sundown. It was very nice traveling in the new Pilot, and I've decided that I really like XM Satellite Radio. We unpacked the car (with the help of Kenny, the bellhop) and quickly strolled over to the City Cafe for a nice meal outside. Now back settled into the room, and Dad's already asleep. His day started pretty early with Mass with Larry, so throw in a long road trip and building stress of what's next, he was worn out.

We're all anxious to find out what the experts will say. Tomorrow is the meeting with the Neurologist. Tuesday is with the Neurosurgery team. I'll keep the blog updated as we find out more. I'm going to try and spend some time in the Cancer education center that they have on the first floor of the Gonda Building. Apparently it's supposed to be quite the place (almost like a library on only one topic: cancer).

More tomorrow.

Look for more updates on Monday night

Well, the weekend is upon us and final preparations are underway for the trip to Mayo's. I fly out of PDX at 0'dark thirty, arriving into Omaha late afternoon. I'm very anxious to see everyone, to say the least.

Dad has had a pretty good couple of days, although he's been knocked down a notch with a cold that has somehow decided to show up for both Mom and Dad. Both are on antibiotics and Dad seems to be feeling better. Dad's also starting to talk a bit about some pressure/pain in his right eye. We're not sure if this is cold-related or what. I'm just glad we're going to see the expert crew in the Gonda Building in Rochester Monday and Tuesday.

Neurology appointment is Monday. Neurosurgery consultation is on Tuesday. I'll update the blog as we learn more. Keep those prayer chains and positive thoughts rolling throughout the week. I can't tell you how much it means to all of us.

Be well this weekend.