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!

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!

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!

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.

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

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!