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.

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.

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:

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!

The Emporer's New Clothes

Rilley modelling the new shirt.

Earlier this month, in an effort to recognize Rilley's 6 month anniversary since his surgery, Sara searched high and low for just the right memento.  She had come across a website that sells dog shirts with a variety of causes emblazoned upon them.  There was one that caught our eye that read:

Survivor

It Came

We Fought

I Won

Brain Cancer Awareness

To which we added the line:

Thanks to the Ohlfest Brain Tumor Lab

When we dropped by to see Dr. Pluhar last Monday we had Rilley show it off to her.  She thought it was great.  So when we left Rilley at the Veterinary Medical Center with her, we took the shirt with us to show to Dr. Ohlfest.  When we pulled it out at the restaurant, he thought it was a really neat idea and asked if he could keep it.  Of course, it's the least we could do!  Tonight I received an email from him saying that he is thinking about framing it and putting it up in the lab to show the staff the impact they are having.  We think that is a great idea and can think of no better way that the shirt could be used.

A close up of the shirt.

One final note...as of tonight Rilley's little blog has had 5056 hits!  Thank you everyone for your continued support and interest in his story.