Monday, December 26, 2011

Rilley's Bonus Christmas #2


This past December 25th marked what I've been referring to as  Rilley's second "bonus" Christmas.  After all, if we hadn't begun this adventure, he wouldn't have been with us last Christmas either.  All in all it was a good day, he received gifts of various sorts of treats including a large tub of Milk Bones!

Rilley and his really big jar of Milk Bones!
"Hurry...open it up! It looks yummy!"
I can't say that anything out of the ordinary happened...although that's kind of the point, isn't it?  He's back to being just a regular dog.  Well, almost...it IS Rilley after all.  The fact that he enjoyed all that Christmas dinner had to offer is gratifying in its simplicity.  That and the sight of him stealing some food out of the fridge just a few minutes ago!

Despite the big jar of Milk Bones and having some of the turkey dinner,
not all of his treats were bad.  Santa left him an all natural peanut butter
and grain dog treat and he seems to have loved it!
So, as the end of the year draws near we would hope everyone has had a wonderful Christmas and will have a great new year.  Here's hoping I will be able to make a post for his 3rd bonus Christmas next year!


P.S.  This marks out 100th post to the blog!  With almost 8200 visits since its inception.  Thanks everyone!

Thursday, December 15, 2011

Remember that cell bill....


As I had mentioned in one of the posts about our fourth and final trip to Minneapolis last month, Sara had an unfortunate turn of events with her journey as she had to fly down on her own.  Her flights turned into diversions and delays that culminated with being stranded at Chicago's O'Hare airport.  I had predicted that, as a result of all the calls she made while trying to straighten everything out, we'd have quite the cell phone bill when we returned home.  Well...the bill came in and I did my best to prepare myself for what it would say.  I knew it wouldn't be cheap but I never dreamed that the one day of roaming charges alone would amount to almost...

 $400.00!!!!

The total bill for the month (including our regular plan rate) was just north of $500.00.  Wow...I couldn't believe it.  However, I quickly realized that the cell company was simply charging me what they would charge anyone else who makes calls while roaming out-of-country.

Now, I can tell what you're thinking...the monolithic cell phone companies don't care about how much you racked up, they're just out to get everything they can.  While I can certainly understand why you would feel that way, I decided I would try to see what my cell carrier may be willing to do.  Besides...what was the worst that could happen?  They would simply tell me that we had made those calls, which was true, thereby we used the service they offered, which was also true and as a result we would be responsible for the charges.  True, true and true.

Nevertheless, I sat down and wrote a letter to the president of Rogers Communications Inc. (the parent company of Rogers Wireless), Mr. Nadir Mohamed.  I told him about Rilley's story and how his life was saved while participating in ground breaking research that, hopefully, would one day save the lives of countless people afflicted with brain tumours.  Obviously, I also told him how we came to amass such a bill in one month.

Again, right now you're saying to yourself...

"You'll never hear back.
There's no way he'll care...if he even does read your letter."

Well then, my friends, you'd better sit down!

On my way home from work this afternoon, my cell phone rang.  It was a gentleman named Brain, who said he was calling from the president's office at Rogers Communications and it was in regards to my letter! So I swallowed hard, and did my best to sound intelligent.  I can't say I was fully prepared as I honestly believed the same as you...there was no way my letter would make a difference.  It wasn't a long conversation, but Brian just wanted to talk about the situation, make some suggestions on how to avoid this from happening again and then he let me know that they would be reversing all the roaming charges!  Wow, I was floored...it's a good thing I kept control of the car!  (Yes, I was speaking on my Bluetooth headset...after all we do have laws against hand held devices while driving in Ontario...and rightfully so!)  I actually had to ask him a couple of times if I had heard him correctly.  This was honestly a very pleasant surprise.

To that end I would like to express my heartfelt thanks and appreciation to both Brian (sorry, I didn't get your last name) and Mr. Nadir Mohamed, President of Rogers Communications Inc. for their help and support.  This was a very generous thing for them to do and Rilley would also like to send along a big thank you!


Monday, December 5, 2011

The Early Show airs story on Drs. Pluhar & Ohlfest


While the girls and I were en route to Minneapolis for Rilley's final visit last month, I had posted that CBS's "The early Show" was going to run a story on the work that Dr. Pluhar and Dr. Ohlfest are doing.  We had even delayed our departure from the stop over in Kalamazoo to watch the show...only to find out that it had been bumped from that morning's lineup.

Well, it finally aired this morning and since I was at work at the time I had to wait until I got home this evening to watch it on CBS News website.  The story also includes another interview with John Huls, the man who is receiving the same treatment Rilley did.  I've posted the story below for your viewing pleasure.  For those who love catching continuity errors see if you can spot John Ohlfest's disappearing and reappearing beard!  Sorry CBS, but working in television myself, I couldn't resist pointing this out.... ;^)


Man's best friend: Key to brain cancer cure?
CBS News correspondent Debbye Turner Bell reports on an experimental vaccine for a deadly form of brain cancer that's being tested on dogs that stimulates the patient's own immune system to fight the tumor, and perhaps even prevent a recurrence of the disease.

Wednesday, November 16, 2011

The Final Trip: Day 2 and then we hit the road home!

This day would bring our last official visit to the University of Minnesota.  After all of the stress of our first day in Minneapolis it was nice to have a bit of time to sleep in, eat a relaxing breakfast and then pack the Jeep for the drive home.  Once we were all checked out of our hotel, we headed over to the Veterinary Medical Center to meet with Dr. Pluhar at 10am so we could discuss the results of Rilley's final MRI, blood work and physical exam.
One last visit to the Veterinary Medical Center at the
University of Minnesota!
As always there is some anxiety involved with this process.  The fact that Rilley's treatment is new and experimental has not been lost on us.  Whenever we come here we are always wondering if there will be any bad news.  Did they find anything during the MRI?  Could the tumour have come back?  Is there something else wrong?  While the girls kept Rilley entertained, Sara and I went off to a viewing area to look at the MRI with Dr. Pluhar.

Just like every other time, she pulled up the scan from our last visit and placed it side by side with the new scan.   They were identical!  The new scan was completely clear of any cancer cells!  We were all relieved.
The final MRI:  Completely clean, no tumour cells!
The only difference is that Rilley had grown some more bone where they had cut through his skull a year ago to remove the tumour.  I found this very interesting as I didn't realize that this long after the surgery there was still some healing going on.  Additionally, Rilley's blood work was normal.  Ever since the beginning Dr. Pluhar has kept an eye on his liver enzymes as his old anti-seizure medication, Phenobarbital, had cause these to rise to dangerous levels.  Once again, they were normal as well, indicating that his current medication is not causing any ill effects.

Rilley is now considered to be officially cured of his cancer.  He is expected to live out his years to their full extent and Dr. Pluhar does not foresee any recurrence of his brain tumour!

So, good news all around but sadly, it was time to go.  This having been Rilley's one year, post-op checkup also means that his participation in the brain tumour clinical trial has come to an end.  We said our goodbyes and Rilley posed for one last picture with Dr. Pluhar.
Rilley and the two Elizabeths!
Before we left the University for the last time, we went over to the school book store to pick up some souvenirs, U of M sweatshirts to be exact and then it was time to hit the road for the drive home.
Bags of U of M souvenirs and it's time to head back home.
Having done this drive a few times before, we decided that we would not attempt to do the entire 16 hours of it at once anymore.  We've done that before, but it just wasn't worth the fatigue.  Those who have driven through Michigan and Wisconsin will know that there is a lot of deer along Interstates 90 and 94 and they have a tendency to become large scale road kill.  Therefore driving during daylight hours is definitely the safer method, especially when travelling with children.
At a rest area in Wisconsin.  Notice the snow in the background?
Still there from a few days before!
We drove six hours, straight through Wisconsin and spent Friday night at the Sheraton in Elk Grove, Illinois, a suburb of Chicago.  Sara had always wanted to try true Chicago style pizza.  Before we even left home Sara had done some research and found out that some of the best pizza is from a pizzeria called Lou Malnati's and as luck would have it there was one just around the corner from the hotel.
Two pies from Lou Malnati's in Chicago.  Darn good pizza!
I must say the buttery, pie-like crust was a surprise but added an interesting texture to the pizza.  We've never had pizza like this before but was very good!

The rest of the trip home was quite uneventful.  We were back on the road Saturday morning and sailed right through Chicago.  The weather was great which helped make the drive through Illinois, Indiana and Michigan much, much easier to take than the snowy Wisconsin weather I drove through on the trip to Minnesota.  We finally arrived back home around 7pm that evening and everyone was glad the last drive was done.

As I said, this was our final trip to the University and Rilley is no longer part of the clinical trial.  However, the story is far from over.  We will continue to stay in contact with Drs. Pluhar and Ohlfest to keep them informed on Rilley's progress.

This is also not the end of Rilley's blog either.  It's been such an adventure so far and we know there will be many more stories to share in the future.

Monday, November 14, 2011

The Final Trip: Day 1 in Minneapolis

Waiting to spend the day at the University.
While the drive had it's moments with the weather through Wisconsin, Thursday had its tense moments as well. While the weather in Minneapolis was calm, there was enough concern about Rilley that Sara chose to fly into town to be present for his MRI the next day.  Despite this change in plans, the day was to progress as normal.  The girls and I were to get up, have breakfast and then head over to the University so that Rilley could spend the day with Dr. Pluhar.  This would allow her to do his final physical and neurological exams and collect the samples for his bloodwork over the course of the day.


As I mentioned, Sara was on her way and she caught a morning flight.  Her journey was to have three legs.  Toronto to Philadelphia, then on to Chicago (that toddlin' town!) and finally from Chicago to Minneapolis.  However, before leaving for the University, I got my first hint that things were not going as planned.  Her flight had been diverted to Pittsburgh due to fog in Philly.  This was putting her other connecting flights and planned arrival time of 4pm in jeopardy.

On the drive over to the Veterinary Medical Center Sara called to say that her flight was departing for Philadelphia.  This was good news as it made me feel like the day was back on track.  The girls and I dropped Rilley off and with him preoccupied for the day, I had promised the girls lunch followed by a few hours at the Mall of America, in particular the Nickelodeon Universe amusement park. While leaving the campus, I received a recorded message from the airline telling me that Sara's Philly to Chicago flight was being held to accommodate the delayed/diverted flight from Toronto.

Before lunch, I quickly popped into the hotel to check the status of her flight on the computer.  I soon realized that while it was good that her flight to Chicago was waiting for them, this would cause her to miss her last connecting flight into Minneapolis.  The major concern here was that her first two flights (three including the diversion) were with the same carrier, but the last leg was a different airline and they may not be sympathetic.  However, for the moment, there was nothing I could do.  Rilley was at the University and Sara was still in the air heading to Philadelphia.  So given that we only had a few hours of free time this entire trip, it was the perfect time for the kids to be entertained.
The Nickelodeon Universe wristbands, courtesy of the
Eagan Convention and Visitors Bureau.
At this point, I must thank Debbie Stirtz of the Eagan Convention and Visitors Bureau for providing the two free, unlimited ride wrist bands for the girls.  She had left a nice little welcome package at the hotel's front desk ahead of our arrival that was filled with goodies and coupon books for the area's businesses.  Debbie even went well above and beyond the call of duty when she found out the reason for our trip.  She went out of her way to leave Rilley a bag of Natural Choice Crunchy Treats!  Debbie, Rilley says thank you!  He loves them.
...and a special welcome treat for Rilley.
Thanks for thinking of him Debbie!
The amusement park was empty as it was a weekday (the local kids were in school) and the girls were having a great time.  Then, as if Sara's travel problems weren't enough, I got a call from Dr. Pluhar.  It seems that something had come up and they needed to do Rilley's MRI right away.  This was not something that I had anticipated as we already had a very specific schedule.  Now, you might say what's the big deal?  Well, the problem lay in the fact that Rilley has not had a good history with the anesthetic.  The last few times he had been in the MRI, he had woken up and extubated himself, that is to say he coughed up the breathing tube that keeps his airway open during the scan.  Back in May he even began to chew on the intubation tube resulting in the need to give him more anesthesia to put him back under.  I knew this would not sit well with Sara as she had wanted to speak with the anesthesiologist prior to Rilley being prepped for the MRI.  I sent Sara a text to call me at the first available opportunity.

A short while later, Sara landed in Chicago and as expected missing her connection to Minneapolis.  She managed to check her itinerary online using her iPod touch and noticed that someone (or something) had updated her itinerary and booked her on another flight out.  Awesome!  Being on the secure side of the terminal, there was no need to return to the check-in counter so she went to wait at the assigned gate for boarding.  When she approached the gate attendant she was informed that while her itinerary had been updated, there was no electronic ticket issued and the flight was full.  Sara then got on the phone to the airline and they rebooked her onto the next flight out.  Again, when she went to board there was no e-ticket.  At this point she was stranded so she called me and it quickly became evident that she didn't need the stress of the change in plans in Minneapolis on top of the fact that she seemed to have no way of getting there.

Determined, Sara got on the phone to the company that she had originally made her travel arrangements through.  While they claimed that the missing e-tickets were not their fault, Sara kept pressing them until they confirmed her onto a new flight that would arrive in Minneapolis at 9pm...a full five hours after she was to have originally arrived...before this entire ordeal began.

One added stress that we didn't account, or more to the point, budget for was a whole bunch of cell calls.  We had thought that the quick call to say Sara was fine and where to meet her at the Minneapolis airport would be all the calls we'd make.  You see, when roaming in the U.S. on a Canadian cellular plan each call costs $1.45 per minute.  That last call to the travel company lasted over 45 minutes!  I can honestly tell you that at this point I am afraid to open my next cell bill.  So afraid in fact that I am not ashamed to ask:

"Does anyone out there work for Rogers Mobile who has the power and the will to wipe out the roaming and long distance charges accrued on this trip?  In the name of science and cancer research?  Please?  Pretty please?  Pretty please with sugar on top?  I will even give you a shout-out on the blog!!!!"

Seriously, at this point I am really, really not ashamed to ask!

The day rounded out with the girls and I picking up Rilley from the University around 6pm and eventually, Sara did make it to Minneapolis.  Boy was Rilley happy to see her!  In the meantime I had contacted Dr. Pluhar and arranged an appointment for Friday to go over the results of the blood work and MRI.

More to come...Rilley's final day in Minneapolis.  Stay tuned!

Sunday, November 13, 2011

The Final Trip: What a drive!

Have Winnie will travel.
Rilley's Winnie-the-Pooh has accompanied him on every trip to Minneapolis.

This is the first post detailing Rilley's final visit to the University of Minnesota.  The trip ended up being quite hectic and left little time for me to update the blog while we were away.  Now that I've had a day to recover, I can begin by writing about the drive to Minneapolis.  One thing that made it interesting was that it was just me, travelling alone with Rilley and the kids, as Sara had to stay behind to work.  This proved to make everyday quite hectic as I always had to plan everything around them...no running out to the store and leaving them in a hotel room alone.  Sorry Rilley, I can't really trust you to be an effective babysitter!

Tuesday:
The kids and I left home around noon and drove the first six hour stretch to Kalamazoo, Michigan where I had booked us a room at the Best Western Plus.  This is the same hotel we had stayed in when the four of us made the trip last May.  They not only accept pets, but for a regular hotel they have easy access to the outside.  Whenever Rilley needed out, there was a door at the bottom of the stairs that I could use to get out and back in.  So no waiting on an elevator and no need to make our way to the lobby every time.  This night the kids discovered their new favourite pizza, the "All Meaty" from Jets, a local pizzeria whose ad was in the room.  The pizza was quite good and given Rilley's constant drooling, I think he really, really wanted a bite...sorry buddy.
Elizabeth and Rilley getting comfortable.
Wednesday:
We got up to watch The Early Show as I had posted about the last time.  However, if anyone else did watch the show they will have noticed that Drs. Ohlfest and Pluhar were nowhere to be seen.  As is inherent in television news, something can always come up and that is just what happened...another story bumped theirs. However, The Early Show producers have assured Dr. Pluhar that the story will air and once they provide her with a new air date she will pass it along and I, in turn, will post it here.
Rilley enjoying the ride.
We were on the road again around 9:30am to complete the remaining 10 hours of driving to Minneapolis.  I had checked the weather prior to leaving the hotel and took note of the high winds expected as we got closer to Lake Michigan.  In the end, the winds were not a major concern but rather the snow storm that we hit beginning in Belvidere, Illinois and lasting well into Wisconsin.  It felt like the middle of February!  Some of the road conditions did make the girls nervous, but fortunately for us, after a few hours of winter driving, the weather, as well as the roads, cleared right up.
Just after entering Wisconsin.
The same state...a few hours later.
I must admit for a lot of the drive I almost forgot that Rilley was in the Jeep at all.  He really seems to have taken to travelling.  We had set up his bed on a special "dog hammock" to help keep him from falling into the space between the back and front seats.
Katherine and her favourite pup!
Around 5:30pm we arrived in the Twin Cities.  Here I also booked us into the same hotel as the last trip...the Marriott Residence Inn in the Minneapolis suburb of Eagan.   Just as the hotel in Kalamazoo, this hotel was picked because it has easy access to the outside for Rilley.

So, that about sums up the journey to Minneapolis. It was definitely more comfortable having one less person in the car, however it really felt strange travelling such a distance without Sara.

Thursday didn't turn out as expected...but we'll save that story until tomorrow.

Tuesday, November 8, 2011

Drs. Ohlfest and Pluhar on CBS's "The Early Show" tomorrow!

I just got word that Dr. John Ohlfest and Dr. Elizabeth Pluhar will be on CBS's "The Early Show" tomorrow!  They will be discussing the canine brain tumour study that Rilley has been participating in.  Too bad that we are still en route...perhaps our pup could've made a special guest appearance!

From what I understand the show is on at 7am...so sorry for the short notice, but they definitely deserve the attention.  I will try to catch it from the hotel room before we head out on the road again.

Hitting the open road one more time!!!!

We can't believe it's time to leave for our final journey to Minneapolis!
I'm writing this just before I pack up the laptop for our final trip to Minneapolis for Rilley's last exam and MRI. Having done this trip three times now, I've wised up and am not attempting a straight through, 16 hour drive in either direction.  Just as last time, we will be stopping for the night in Kalamazoo, about 6 hours into the trip, leaving the rest of the drive for Wednesday.

The schedule is pretty tight, so this may be my last post until we return this coming weekend, however I will endeavour to update it along the way.

Roy.

Friday, November 4, 2011

MAJOR MILESTONE: Rilley has made it to one year!

Rilley, left,  just after surgery one year ago and today, right.
One year ago today Rilley underwent brain surgery to remove the meningioma that was threatening his life.  This was the first step in his amazing recovery and thanks to the groundbreaking work being done at the University of Minnesota he is still with us today.  By the time we return from his fourth and final visit to Minneapolis this month we will have driven almost 12000km (close to 7500 miles) but seeing the smiles on our daughters faces whenever they see him has made it all worthwhile.

Rilley is celebrating this day in his usual style...lying around the house.  Yeah, high energy, I know.  I don't think he realizes just how far he's come.  Just look at the pictures above...his shaved head and stitches which earned him the nickname "bacon-head" because of the colouring and the one that was taken today where he looks like his old self.  The only indication of the fact that he had surgery is the slight black line in the white highlight on his head.

While we observed this special date in our household today, over the coming weeks we will be celebrating this monumental milestone on the blog.  It will be getting a facelift and we plan on creating special posts where we will look back over the events and people from the past year and provide updates on the last trip for his final exam and MRI.

Thursday, November 3, 2011

Cancer patient meets dog receiving same treatment as Rilley

Yesterday I came across an interesting story done by Boua Xiong of KARE-TV in Minneapolis.  It focuses on a very unique meeting that took place at the University of Minnesota .  A patient enrolled in the human trials had the opportunity to meet one of the dogs enrolled in the same trial as Rilley.  John Huls was diagnosed with a brain tumour two years ago and is receiving a treatment similar to the one that Rilley had undergone.  He got to meet Piper, a 14 year old golden retriever at the University's Small Animal Clinic...a place Rilley's gotten to know very well.  Here's the story:


I had come across this story on another blog, www.dogcancerblog.com written by Dr. Damien Dressler out of Hawaii.  I haven't explored his site completely but he seems to have a lot of good resources for those whose dog's have been diagnosed with cancer.

One other link that I found on his site could be of benefit for those who have come across our blog while looking for answers.  It is a list of veterinary oncolological clinical trials maintained by the Veterinary Cancer Society.  The link is www.vetcancersociety.org/clinical-research.html and I will add it to the "Related Links" section at the bottom of the page.

Lastly, tomorrow is November 4th, a very significant date around our house as it will mark the one year anniversary of Rilley's surgery!  It's hard to believe that it has been that long already...a theme that may end up recurring throughout tomorrow's special post.

Tuesday, October 4, 2011

11 Months and Still Here!

"As long as there is food, I'm stickin' around!"
What more is there to say?  Rilley is doing well 11 months after beginning his treatment at the University of Minnesota.  Yes, it's been nearly a year since our first 16 hour drive to Minneapolis, his life-saving surgery and the beginning of the experimental vaccines. We have roughly one more month to go before we pack up once again and head out on the road for his last follow up exam and MRI.

So there you have it!  Our shortest blog entry to date...our 90th post too!

Thursday, September 29, 2011

The wonders of mail order medication!

The cost of Rilley's medication has always been a concern, especially given the fact that he receives his Levetiracetam (a.k.a. Keppra), three times a day and will most likely continue on that for the rest of his life.  Something that we expect will be a very long time.  We have been spending on average $1.83 per pill by buying them from our local pharmacy in lots of 60 pills.  Today we received our first order of capsules from a pharmacy in the U.S. that not only costs just $0.75 per pill (including shipping, taxes and duty) but is also custom tailored so that the dosage is much more accurate.  This is something that isn't available to us here, we've been having to use the closest available human dose.  So not only does this allow us to save money, but by knowing that the medication is delivered in a precise manner it puts us more at ease in light of the recent incidents of possible breakthrough seizures.

Check out the size of bottle that came:
Yes, it's a legit bottle, I just digitally removed some personal info.
No, that is not a child's hand, this bottle is quite large and contains 270 capsules.  That's enough to last Rilley 90 days (almost three months)! Or as he would think of it...270 Pill Pockets!!!!

Best of all, within two days of ordering it is delivered right to the door!

Saturday, September 24, 2011

Rilley! It's NOT Pill-O'Clock!

Near the end of last month, we sought out Rilley's original neurologist, Dr. Fiona James to have her review his medication levels.  It has now been close to a month on his new dose and we are happy to report that we have seen no signs of any breakthrough or focal seizures.  Everything seems to have returned to normal.  The only thing we still need to do is to find an autofeeder that we can modify to be wall mounted in order for him to reliably receive his 3pm dose without the need for us to be home.

"Where's my pill?"
However, we have discovered another downside since the return to three daily doses.  Rilley seems to have become a bit of an addict.  His addiction seems to become the most prevalent just prior to his 11pm dose.  It has become so bad that he begins whining just after 10pm and sometimes keeps it up until he finally gets his medication.  We can't figure out for sure if he's addicted to the medication or the Greenies Pill Pockets that he gets it in.  Around the house, we've come to refer to 11pm as "Pill O'Clock" and the kids have even taken to telling him...

"Rilley!  It's NOT Pill-O'Clock yet!"

Unfortunately, I don't think he cares...he's just wants his next fix!

So, for now, all is well again with Rilley and we are beginning to make plans for our forth and final trip to the University of Minnesota.


Please continue to vote for Ted Reader!
One final note, back in August we posted that celebrity barbeque chef Ted Reader is hoping to win $10,000 for the kids at Camp Bucko, the Burn Camp for Kids in Ontario.  (See: Rilley asks you to support Camp Bucko) Well, the voting continues and Ted is currently in the lead by a good margin.  However, the contest runs until October 31 and we would like to make sure he stays in first place.  So we would like to ask that everyone continue voting as often as possible at http://www.grolschmark.com/video/77.  (You can vote up to once every 24 hours, twice if you vote with both your Facebook and Twitter accounts.)  Thanks!

Sunday, September 4, 2011

MILESTONE: 10 Months and still going!

SEPTEMBER 4, 2011

Today marks the 10th month since Rilley had his surgery and he has pretty much remained seizure free. As we've noted lately he has experienced what we believe may be some minor breakthrough seizures.  However we like to stay positive and take solace in the fact that he has not experienced any grand mals since before the surgery late last year.  We are hoping that these latest issues just end up being some bumps in the road.

Actually, it has been quite the road over these last few months.  Aside from the literal road and having driven over 9000km to date, this blog has received almost 6400 hits and through it we've had contact with some very interesting people.  In fact, about two weeks ago, we received another email from some owners whose dog had also been in the clinical trial.  Pam and Steve Solie, who happen to live in the Twin Cities, applied to have their dog Louie accepted into the program after being diagnosed with a rare form of cerebral neuroblastoma.  Just like Rilley, little Louie came through the surgery with flying colours, however within weeks, during his rounds of vaccine injections, Louie took a turn for the worse and on February 12th Steve and Pam had to say goodbye.  I would like to thank Pam for taking the time to share Louie's story with me.  It reminds us that no matter how well Rilley is doing nor how advanced the treatment is, something can always happen.
Louie - Another brave soul who did battle with a brain tumour.
Despite the sadness the that the Solie's have experienced, Pam did say that they would've made the same decision to have Louie participate in the study if they had to do it all over again.  I can honestly say that Sara and I feel the same.  It also helps to know that the very treatment Louie and Rilley have been receiving is now helping nine people enrolled in the human version of the program.

I realize that we have been fortunate and Rilley is laying beside me at this very moment, but I also know that if he hadn't been in the trial we wouldn't be recognizing his 10th month of survival today.

Time to adjust his meds.

A few weeks ago, we had mentioned in a post that Rilley seemed to have begun experiencing focal and localized seizures.  There had been about three incidents that involved short episodes of staring into space and one instance of "chattering teeth" while fully conscious.  At the time Rilley was receiving his medication twice a day; a dosage that we began shortly after returning from Minnesota in late May.  These new episodes were always taking place at the same time of day...late afternoon...close to the time of his next pill.

Obviously, we needed to figure this out and perhaps adjust his medication.  We contacted both Dr. Ewing, Rilley's local veterinarian and Dr. Pluhar at the University of Minnesota for advice.  A working theory was that despite being on a slightly higher dose for his twice, versus three times a day dosage, the levels of medication in his system were getting too low at that time of day.

This seemed likely, but just to be sure we took things one step further...but then again, don't we always?

The James Archibald Small Animal Clinic at the University of Guelph
We sought out the neurologist who originally diagnosed Rilley with the brain tumour, Dr. Fiona James.  It turned out that since we last saw her, Dr. Fiona James had left the Mississauga Oakville Emergency Veterinary Hospital but Sara managed to track her down at Ontario Veterinary College, University of Guelph.  We contacted Dr. James and she was more than willing to see Rilley, so Dr. Ewing drew up the referral letter and sent along some of his recent files.  In turn we gathered up all of his MRIs and headed out to Guelph.  Fortunately, the university there is only a 40 minute drive for us.

One side note:  leading up to this appointment Sara had discovered a test that could tell us what the levels of Rilley's medication would be at different times of the day.  There's one caveat however...this test is only done by one facility...Auburn University in Auburn, Alabama.  Now, I know what you're thinking...

"They're not seriously going to drive to Alabama for a blood test on their dog, are they?"

Well...no, we're not.  Obviously we've gone great distances to help Rilley beat this cancer so I can see where that thought would come from.  However, this test can be done by drawing his blood samples here and then shipping them to Alabama.  Interestingly enough, we also found out that if the test were done by the University of Guelph, it would cost half as much as through a regular vet office...there must be some kind of inter-university discount.

This test was discussed during our visit with Dr. James, however it was determined that it would be unnecessary right now.  After going over Rilley's medication and symptoms, Dr. James agreed that it did seem likely that the levels of Keppra in his system could be decreasing to below therapeutic levels before his next dose.  So she suggested that we simply increase his mediation a bit more.  If his symptoms disappear, then we know that was the solution.  If not, we still have a bit more room to play in which we can increase the dose.

We must admit that it was disappointing to switch from the twice daily dosing to three times daily, however over the summer it wasn't too difficult to do the midday dose as someone was usually home.  On the odd day that no one would be home, one of our good neighbours would stop in to give it to him.  Unfortunately, the new school year is upon us, so now that it is becoming vitally important for Rilley to receive his medication more timely, we need to find a reliable method of giving him his 3pm dose.  Dr. James suggested using a timed autofeeder and mentioned two different types that are available.  The first being an enclosed feeding bowl that sits on the floor and pops open at the designated time.  Sounds good, however given the fact that Rilley has a history of breaking into food containers, not to mention the actual fridge, this may not be a realistic solution.  The other type is one that we can mount up high which would drop his medication, encased inside of a Greenies Pill Pocket, down into a bowl.  The problem lies in trying to find one, this type doesn't seem to be as popular...just our luck.

So this is were I leave this post, we are on the hunt for just this type of feeder.

Sunday, August 14, 2011

Rilley asks you to support Camp Bucko (and it won't cost you a cent!)

Rilley says "Please support Camp Bucko!"
In the post "Rilley the therapy dog...well, sort of" we mentioned that our youngest daughter Elizabeth had suffered severe burns to her legs and feet back in March.  Now I realize that this post may not fit in with the theme of Rilley's journey with a brain tumour, but we feel it is important to have this reach as many people as possible.
Elizabeth had the amazing opportunity to attend Camp Bucko this past week.  For those that haven't heard of it, Camp Bucko is a unique summer camp for kids that have been victims of severe burns.  It is run by a dedicated group of volunteers through the generous donations of various people and organizations.  One of those who volunteer their time is famous barbeque chef Ted Reader.  This past Wednesday Ted and his team traveled up to the camp to prepare an excellent lunch for all the campers and volunteers.

Famous Barbeque Chef Ted Reader
However, Ted is taking things one step further and has entered a contest sponsored by Grolsch beer.  Grolsch is giving away $10,000 that, if he wins, Ted will donate to Camp Bucko.  This is why I've decided to dedicate a post on our little blog, it is our small way of saying thank you for all that the camp has done for children like Elizabeth.  I would like to ask that you visit Ted's page on the Grolsch Mark contest site and vote for his video.  Voting is done by using your Facebook and/or Twitter accounts, meaning that if you have both, you can vote twice. You can vote once per day with each account.  The contest closes October 31, 2011, so there's plenty of time to register lots of votes!

For those techie types that prefer QR codes, point your mobile device at the code below to be taken directly to Ted's video page:
This QR code links you to: http://www.grolschmark.com/video/77

Wednesday, August 10, 2011

One year ago Rilley's journey began


Rilley - One year later.
On this exact date one year ago today we embarked on this journey with our beloved beagle.  It was August 10, 2010 when Rilley first experienced a grand mal seizure on the floor of our bedroom.  A month later we had the official diagnosis of the meningioma tumour pressing on his brain.  With the shocking discovery and the bleak prognosis it seems strange how many positive things have fallen into place to save his life.  In fact the four-legged, furry proof is sitting right beside me as I write this.

However, not everything has been running smoothly of late.  Rilley seems to have been experiencing some minor focal seizures.  During our first visit to Minneapolis, Dr. Pluhar had told us that even with the tumour gone, his brain would be "wired" for seizures and that's why he cannot, ever, come of off his anti-seizure medication.  We've been fortunate so far in that we have never observed any seizure activity.  There is a consensus that it may have been a result in the slight drop in his dosage.  When we switched from administering his medication three times daily to twice a day the way the math worked out with the new caplets caused a slight drop in the total daily dosage.  Compounding the issue was the increased time between medications, which we believe may have caused the morning dose to begin to wear off before the evening dose was to be given.  We have now switched back to three daily doses.  Unfortunately, we've lost the convenience of not needing to give the midday dose.

One other suggestion that Dr. Pluhar had made was to buy Keppra XR, the extended release version of Rilley's anti-seizure medication.  However, when we called our local drug store, they hadn't heard of this variant of the drug.  The pharmacist even checked with the other distributor they use.  As usual, Sara doesn't give up that easily and she contacted the distributor of Keppra in Canada.  They told us that Keppra XR is not available in Canada.  I have a feeling that it just may not be approved for use here...yet.  We may try to contact the Canadian Food Inspection Agency to see if we could get permission to have it imported since it would be used for an animal and not in humans.  At the moment that is merely a thought...we don't even know if it would even be affordable.

Hopefully this is just a small bump in the road and that Rilley will continue to thrive.

Congratulations Rilley, from a six week prognosis to a year later you've come a long way!

Thursday, August 4, 2011

Rilley's 9th post surgical month comes with more positive test results.

Today marks Rilley's ninth month since his surgery and with the summer in full swing, the kids back and forth to activities and camps we've barely had time to slow down, let alone do much on the computer.  However, two weeks ago Dr. Ohlfest had sent us a quick email to tell us that the proof is in and Rilley's vaccine seems to be a success.  The tests were run on blood samples taken the day of surgery (Nov. 4, 2010), before any vaccine had been given, then again on blood taken during our three month follow up visit (Feb. 4, 2011), at which time his sixth and final vaccine was administered, and finally on blood from our six month follow up visit (May 24, 2011).
"As promised, the evidence that vaccines generated tumor-reactive antibody response in your Rilley.  Looks like black lines, but understand that each line represents a single antibody specific to a single protein on his tumor.  This helps explain his survival." - John Ohlfest, Ph.D.
Given that I do not have a scientific background, I hope that I can do this topic justice by trying to explain it in plain English.  In the image above, the strip dated 11-4-2010 is clear of any sign of the tumour specific antibodies.  This would be obvious to those who have followed Rilley's story from the beginning as the vaccine was created using parts of the tumour that was extracted on that date.  Hence, no vaccine was in existence yet.

In the strips dated 2-4-2011 and 5-24-2011 you will notice that horizontal lines have appeared. These lines represent the antibodies that are specific to single proteins that were on Rilley's tumour.  The theory is that some, but not necessarily all of the antibodies may have direct anti-tumour effects by triggering other immune cells in Rilley's body to recognize and kill a tumour.  Now that Rilley is tumour free, as proven by the last two MRIs, these antibodies will now stand guard in an attempt fight off any recurrence of his specific tumour.

As I quoted from Dr. Ohlfest's email above, this helps to explain why Rilley has done so well.  We are hopeful that the same tests run this coming November, our one year (and final) follow up visit, will yield the same results.

Monday, July 4, 2011

MILESTONE: 8 months and still tumour and seizure free!

How time flies!  I haven't intentionally neglected the blog, it's just that things have been going so well that there has really been nothing new to report.  Rilley has made it through another Canada Day long weekend, and today, while our American friends celebrate the 4th of July, Rilley is celebrating:
  • 8 months since his surgery!
  • 8 months without a tumour!
  • 8 months of being seizure free!
The only complaint he seems to have is that one member of the household is missing.  Our eldest daughter went off to camp this past Saturday for three whole weeks and Rilley has definitely noticed.  We know from past experience that this is something that never sits well with him.  No matter how much we tell him that she'll be back soon, he just doesn't seem to care.  He still mopes around the house.  Oh well, what can you do?  He'll probably get used to the idea by the time she comes home.

In an effort to cheer him up, we took him out for a nice long walk on Sunday.  No, not the kind that takes us around the neighbourhood, but rather we climbed into the Jeep and headed off to do a bit of hiking.  We drove up to the Caledon Hills, just northeast of where we live, and ended up at the Cheltenham Badlands.
Cheltenham Badlands
The rough, hilly terrain combined with the beautiful weather made for a great outing.  As has been evident lately, Rilley's balance and energy have come back in spades.  Nothing was going to stop him.  He was up and down the hills, in and out of the valleys, steady along the top of the ridges and loving it all!
King of the Hill!
We're sure he would've stayed there all day long if we had let him, but the warm temperatures along with the dry surroundings were taking their toll.  Yes, we had brought water for all of us (and a bowl for Rilley) but with the sun beating down on the dry, red soil you can only stay there for so long so we packed it in and headed off for ice cream!  (Well, maybe not for Rilley...Dr. Pluhar would still like him to lose some weight.)
"I took on the Badlands and won!"
So there you have it, a rather lengthy entry just to tell you that Rilley has made it to his 8 month milestone.


Saturday, June 4, 2011

MILESTONE: 7 Tumour and Seizure Free Months!

It had just dawned on me.  Today is the 4th of June...and what happens every 4th of the month?  It's banner change day!  Not a physical banner of course, but rather the one at the top of Rilley's blog!

So today marks the seventh month since Rilley underwent the surgery at the University of Minnesota to remove the meningioma from his brain.  The first few months seemed to move so slowly.  Possibly because we were still on pins and needles just waiting for something bad to happen.  Would he have another seizure?  Would there be any side effects of the surgery or the vaccines?  But, as you know, there hasn't been anything negative of note.  Given his clean bill of health and spotless MRIs from the last two visits to Minnesota, Rilley seems to be on the right track.  I am hesitant to use the word cured, because in the grand scheme of things, we are still in the early stages.  Just barely over the half way mark of Drs. Ohlfest and Pluhar's clinical trial, but all indications are positive.

The months now seem to fly by.  It seems like I changed the banner to say "6 Months Tumour Free!" just last week.

So Rilley, we have just five more months until our final visit to the Veterinary Medical Center at the one year mark.

Thursday, June 2, 2011

Rilley's got his Mojo back!

Every once in a while we've posted updates about how Rilley has regained some of his youthful energy.  When Discovery Channel came last October to shoot part of Rilley's story in our backyard, I tried to get him to climb into the kids play fort.  It was very sad to see the impact that his tumour was having on him.  He struggled with the ladder and in the end he just couldn't get the coordination to climb it.  If you saw the story, it begins with him coming down the slide and what you didn't see was that I had to lift him up.  Well, with the beautiful weather we've been having this week, I broke out the barbecue, so I thought I'd get some "edible motivation" and give him another try at climbing the ladder.  Here is the result:
video

As you can see from the video above, Rilley is back to his old self in the coordination and dexterity department!  He's even taken to climbing the ladder with just the promise of a treat.  If he knows you have one, he will climb up and wait for his reward.

One thing that Rilley has never had trouble doing, with or without the tumour, was flopping down anywhere and going to sleep.  The other day I had made the mistake of getting up from the bed and Rilley promptly took my spot, so I took the following picture.  If you look closely, you notice his new bit of swag.  Before he became sick and we went on vacation we would sometimes bring him back a new collar.  The last one was his official Vancouver 2010 collar from the Olympic Games last year.  Well, his six month check up was more or less a bit of a vacation for the girls so we stopped in at one of the campus clothing stores and bought Rilley a brand new University of Minnesota collar.

With his new collar he's now an official U of M dog!
In other news, during his six month checkup we discussed with Dr. Pluhar the possibility of rearranging Rilley's medication so that we can give it to him twice instead of three times a day.  It makes it easier to ensure that he receives his doses on time.  His afternoon medication would limit some of the things we could do with the kids as we would always need to rush back or make arrangements to have someone come in to give it to him.  The bonus for us is that by making the schedule change we were able to switch to one higher dosage tablet, twice a day.  This in turn reduces the number of tablets needed, which despite the higher dose, actually costs less.  It allows us to save $100 a month on his medication!  As I've posted before, the anti-seizure medication is quite expensive and he will be on it for life, so being able to save this much a month is a welcome surprise!