Break through seizure - Update

Early in the week we got in touch with Dr. James at the University of Guelph.  She was more than happy to see Mr. Rilley before next week's appointment if need be.  However, in the end we all decided that since he was his normal self in between episodes it wouldn't necessarily be imperative to bring him in right away.  Again, we've been told to expect these sorts of things and they are always very short in duration.  Dr. James did suggest that we try to catch one of these localized seizures on video so she could see exactly what is going on.

Now, some might say that I could be tempting fate by writing this post but we have not seen any other break through seizures so far this week.  I've been keeping my iPod fully charged at all times and close at hand.  I even went so far as to not take my eyes off of him for pretty much all Monday afternoon until everyone got home.  I think I freaked the poor little guy out.

And so it goes...I just hope I will have a camera handy if or when he has another episode.

Since we've wrapped up Rilley's participation in the Brain Tumor Program at the University of Minnesota, it is reassuring to know that we've got access to a great neurologist like Dr. James so close to home.

Have the breakthrough seizures returned?

A lazy Sunday on the couch, but why does my jaw twitch?

The last few days have been interesting.  We are beginning to wonder if the breakthrough seizures may be returning.  It seems strange, though, they present as uncontrolled jaw movements, with little or no impact on his general behaviour, but they occur around the exact same time of day...usually at some point between 4 and 6pm.  We noticed this both on Friday and then just this afternoon...less than an hour ago.  It has been explained to us that seizures will always be a part of Rilley's life as his brain has now been "hard-wired" to be prone to such phenomenon.  This is exactly why he receives daily anti-seizure medication.

When we last noticed this type of seizure back in August, it had been theorized that it was a result of his twice daily dosage.  The levels of his medication may have been too low just prior to his next pill and as a result we returned him to the three-times-a-day schedule.  This seemed to correct the problem.  Now, we are left wondering if his system has become tolerant of the current levels of medication.  Perhaps we will need to increase the dose again or maybe the neurologist will want to add a secondary medication.

Right now, we have an appointment booked at the University of Guelph for February 8th and are hoping to be able to bump that up.

All in all Rilley seems happy enough.  He still makes every reasonable effort to steal your food...as Sara found out when she tried to eat a snack this afternoon.  Rilley lept up on the sofa, retrieved the yummy muffin from her hand and retreated back to the floor to devour it.  Nothing out of the ordinary there....

I will be sure to post updates as we find out more about what is going on.

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!

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!

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.

Read more: http://www.cbsnews.com/video/watch/?id=7390631n#ixzz1fif2NaIg

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.

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!