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.

Back to Mayo's on Monday

We're engaged in a full-court press now, with appointments at the Mayo Clinic in Rochester Monday and Tuesday. We'll be meeting with the Neurology and Neurosurgery groups over the course of the two days.

In the meantime, we found out that MD Anderson will do a "Is he a surgical candidate or not?" evaluation free of charge and without requiring a trip to Houston within a few days of receiving the scans and records. Those are being ordered/gathered/sent as I type, and we should get an answer from them next week. We want to make sure that all options are evaluated.

The new chemo mix of Avastin/CPT-11 is being readied upon the return from Mayo's. Unsure yet on when Dad may start on that, as if surgery is an option, that will likely be the route taken first to try and get rid of as much of the tumor as possible.

Our first road trip in the new Pilot on Sunday. I'm flying back on Saturday and will have the pleasure of driving the new car with Mom and Dad North to Minnesota. Tracy is going to hang back with Rich and the kids and try to wait for us before Baby Sister arrives in the next few weeks.

Thanks for all of the calls, notes, and prayers. We couldn't do this without all of your support.

I will be updating the blog as regularly and as close to real-time as possible. Cell phone minutes are at a premium right now, and are $.45/minute if we go over, so the blog will be a great place to get information.

You know Dad loves to deal on a car. . .

This is the new car we'll be taking to Mayo's next weekend. 2009 Honda Pilot. O'Daniel Honda probably didn't realize what hit them when he walked in the door. They go in and sign paperwork tomorrow.

Dad loves a good deal. And they got one.

Not the news we were hoping for. .

Well, the MRI scan results are in. We were all mislead a bit by how well Dad was looking and feeling with the latest results. The scan shows that we're dealing with a very aggressive tumor that has grown approximately 3x in the past couple of months. They now think that it's a glioblastoma multiforme (GBM) tumor, which is a downgrade from what we thought we were dealing with.

Chemo and radiation treatments doesn't appear to be as effective as we'd like, so we are looking into next steps and the next line of treatment. Our first step is to go up to the Mayo Clinic on May 4th (first available appointment) and talk to the neuro team there, including being evaluated for neurosurgery for a partial tumor resection. Dad wasn't a candidate for surgery before due to the location of the original tumor, but they want to do a second evaluation with the neurosurgeon to determine if it's now an option. They're also discussing new chemo drugs.

Dad remains upbeat and positive despite the latest news, and please know that we all appreciate the thoughts and prayers that are coming in by phone, email, and even Facebook! We take great comfort in knowing that we have the best medical teams working on the next phase, and we all will continue to do whatever we can to deliver on Dad's request for 20 more years.

In the meantime, he continues his strength training program, talking to a large number of you on the phone, and spending time with the family. He has a granddaughter coming into this world in a few weeks, so we have yet another positive event to bolster everyone's spirits.

The month ahead

I've fallen off the blogging wagon a bit - Apologies to you all that check often.

The past month has been a busy one. Mom and Dad enjoyed a trip out to Oregon for a week. Flying proved to be tolerable with the Bose noise-cancellation headphones, so we'd like to schedule another trip soon! Time spent in Portland and Depoe Bay (where the whales were safely out of sight in the driving wind and rain) was great. Even a trip to the Columbia Sportswear employee store where new fleece and gear was had by all.

Dad started having what we think were seizures the week they returned, but some new medication has him doing well again. He's started a strength and fitness training twice a week at Immanuel Hospital, and hopefully that will do some good for his energy levels. There's the quarterly MRI on Tuesday, with results on Wednesday. We're anxious to see what the scan tells us.

We're also three weeks away from the newest addition to the family. "Baby Sister" Huff will join us in early May. Of course we're convinced that she will immediately fall in love with Grandpa. I predict many short naps in the chair for the both of them.

Quick Post from Oregon -

Road trip to Depoe Bay and back for a few days. The ocean-front condo was great to watch the "intense Pacific storm" rolling in (instead of the whales). Some great meals and very relaxing.

All is good, and Mom and Dad will return to Omaha on Tuesday.

The Monthly Post - February

Sorry, all, for my lack of posting. Dad seems to be talking to ALL of you on a frequent basis, so the guilt hasn't really hit me quite yet.

Things are going pretty well for Dad. He's getting his energy back, has seen the clock hit 10:30pM a few nights (and also has said good night at 7:30PM a few nights), and is starting to get engaged in the community. His lunch calendar with old friends (and I'm talking friends from high school, 50 years ago) is full. He's also getting started with the Make A Wish Foundation at my insistence. He'll be calling donors to thank them for their donation. A perfect assignment for someone like Dad who loves to be on the phone these days. Mom and I joke that he almost needs a teen-line as it's hard to get a free phone line during the days.

Mom and Dad are scheduled to come out to Portland in late March. We're hoping to catch some whales on the Oregon coast, some excellent seafood and local Portland eats. No MRI scans before they come out - that will be when they get back to Omaha end of March. Until then, his next round of chemo starts Monday. It does seem to take it out of him a bit, but overall he's handling the chemo incredibly well.

To those of you that are spending your time on the phone or at lunch with Dad, thanks. He is really enjoying reaching out and connecting with all of his friends.

Happy 65th Birthday and feelin' good!

Dad celebrated his 65th birthday Sunday the 18th, and had two grandson's help him open presents and blow out candles.  Granddaughter Emily was home with a 102 temperature, so she had to wish Grandpa happy birthday via webcam.  She did send out a very special card (as only a near-four-year old could create), and I'm sure it will be kept forever.

Dad completed another round of chemo this month (#4/12 of the maintenance dose), and once again did very well with the treatments.  It knocks him down energy-wise for about 10 days, but this morning I got the report that he is back to his old self and looking great!

We're in the state of not knowing what next steps are, waiting on an MRI likely late February to tell us how the treatments are working.  The fact that Dad is looking so good and strong, and is not exhibiting any new symptoms, keeps us all afloat that the tumor is no match for the radiation and chemo that has been given.  Keep him in your thoughts, as it's going to be a long six weeks to find out more information.  

I keep saying, "There HAS to be a test for _____."  I usually get a "Nope."  I can think of at least two new medical machines that, if I were a physics PhD, I'd be a billionaire right about now.  

Happy New Year

Hope everyone had a Merry Christmas and happy holidays.  The holidays wrapped for us without any incidents, some good laughs, and even a few good movies.

Dad kicked off the new year feeling pretty well.  He's now off of the Ritalyn (for now) - thinking that he's healing up and it is no longer needed to keep him awake during the days.  He keeps getting his strength back more and more each day, which is great to see.  This month's dose of Chemo starts again tomorrow for five days - hoping he does well with it.

We are going to seek out a volunteer job or something to help him pass the time at home.  He has pretty much exhausted the rolodex of people he knows to call and check in, so it's time he puts that energy to a good cause.  :)

He officially has a plane ticket to Portland for March - something to look forward to on the calendar, a change of scenery, and perhaps a change of weather for the better (one never knows in Portland).  Definitely looking forward to that visit with Mom and Dad for about 10 days!

Stay warm!  And here's looking to 2009 to being better than 2008!

Getting ready for the holidays

Things are going pretty well in Elkhorn; good thing, as the weather is keeping everyone buttoned up inside.  I can't wait to join the land of "The high temperature today will be:  2".  

Dad seems to be doing okay.  He's better than he was last week, but still sleeping quite a bit.  They're heading in on Thursday to meet up with the doctors to possibly make a medication change.  

When he's awake - watch out.  He's been dialing the rolodex like crazy, really enjoying catching up with friends and family.  If you try to call, leave a message as he doesn't always click over to answer the call-waiting.  

Overall - spirits are good, and everyone is getting ready for Christmas.  

Please warm those temperatures up a bit before I come in!  While it's 17 degrees in Portland (record cold snap), we haven't seen two degrees as a high.  I think ever.  ;)

A little better today. . .

Text messages were flying in during an all-day meeting today, with mostly positive news.  The medical crew in Omaha thinks this tiredness is mostly due to a reaction to the latest round of chemo, and it should go away in a few days.  Mom forced fluids today to try and combat some dehydration, and that seemed to help a little.  Dad wasn't as confused today, but still slept quite a bit.  Here's hoping tomorrow is better!

Not all of the days are better. . .

Just got off the phone with Mom, who said Dad is not doing as well today.  Not sure if it's the effect of finishing up the five days of chemo, or if the Ritalin isn't doing as good of a job anymore, but things aren't as good as they were even a few days ago when he was out to dinner a couple days with friends and playing checkers and CandyLand with the grandkids.

Dad's been getting a bit more tired and nauseous the past few days, which we attributed to the chemo treatments.  Today, he's quite a bit more confused, sleeping quite a lot, and not so steady on his feet.  Of course all of this started to really "gel" about 5:30PM local time, and since it's not an emergency, the early morning phone calls to the oncologist, home health nurse, and psychiatrist all happen first thing in the AM.

Hopefully this is just a wave caused by the chemo, and that he will be back up and on his feet tomorrow.  I'll try to keep the blog updated when I can.

A little better every day, it seems

I think I can officially go home without too much stress that there is a lot to do back in Omaha while I'm out in Portland.  Dad continues to get a little better every day.  He has more energy, is gaining back some weight, and is able to stay up the majority of the day (although there is still time set aside for a nap each day).

We saw the Oncologist today, and he was very happy to see the progress in just over four weeks.  He ended the appointment with a "good job, girls" - speaking to Mom and me about the persistence in finding out what was wrong and causing Dad to sleep all the time.  He started Dad on round two of the maintenance phase of chemo tonight, which will run for five days in a row.  He's tolerated it very well in the past, and don't think that this time will be any different.

We spent the evening with the Huff's - enjoying a bite to eat out, and then back to the house for all of us on the big couch to watch "The Grinch Who Stole Christmas" with the kids.  Of course I got the kids all wound up when I was leaving, just in time for them to fight bed time.  I'm sure Tracy loves it when I do that. . .but Auntie can't be good ALL the time.  :)

The clarity increases and the confusion lessens, it seems, each day a little bit more.  Who knows?  Maybe by the time I'm home for Christmas Dad will get his driving privileges back?   I think we'll let him drive the vacuum and the treadmill first to see how he handles that.

Amazing how much of a difference there is from the day I landed (Nov 8th) to today.  Night and day, to say the least!