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!

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.

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.