A Long Awaited Update

Rilley...he's doing fine...and getting into trouble along the way!

Life sure has a way of keeping you busy!  I've neglected the blog and kind of left everyone who follows Rilley's story in a bit of cliff hanger.

Sara had taken Rilley for a follow up visit with Dr. James at the University of Guelph last month.  It has been determined that his breakthrough seizures are not something to be overly concerned about.  Dr. James is of the opinion that if these types of events happen once or twice every four or so months and remain as mild as they have been, then this is simply something that Rilley will have to live with.

When you stop and think about it, considering everything he has been through, he is alive and well almost a year and a half after his surgery, just over 16 months actually.  Therefore, the odd breakthrough seizure is minor in comparison.  More importantly, he is happy and our daughter's are thrilled that he is still here causing trouble!

In fact, just last week Rilley had found his way into the fridge and did a bit of a raid while we were out...the kids had apparently forgotten to lock the fridge.

Yes, the fridge has an actual chain lock on it...much to Rilley's chagrin.

It wasn't long until Rilley developed a bit of a tummy ache.  Then, judging by the increasingly frequent whining and trips outside, the tummy ache must have become more serious.  Thinking back to the upset stomach he would get during his short tenure on cancer medication, I ran out to the grocery store to get some ground pumpkin.  As I walked back in the door, it became apparent that the pumpkin was no longer required...the crisis was over...Rilley had seen fit to deposit the entire contents of his stomach onto our bed!  Thanks buddy...I guess it came on so suddenly that you couldn't even ask to be let outside!  Let it be known from this day forth...Rilley has a large stomach!

Anyway, that's how it has been around our house for the last few weeks.

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.