It is Becoming Apparent that We've Made the Right Decision

Over the last few days Rilley has been having more seizures.  While we've been doing our best to keep this blog relatively light hearted, we thought it best to mention that not everything is running along smoothly.  In the past few days he has had four seizures.  This brings his total to ten since Sara witnessed what we believe to be his first one back on August 10th.  Rilley still seems to tolerate them well and they definitely don't last as long as when he first started having them.  They are now averaging less than a minute in length compared to almost four minutes a month ago.  While this is a good indication that his medication is managing his condition, it does reinforce for us that we have made the right decision to proceed with his treatment at the University of Minnesota.

For those who aren't clear on what is going on in Minneapolis, the Ohlfest Brain Tumor Lab is conducting a clinical trial to study the viability of using a vaccine that is developed from the extracted tumour cells to aid in curing the cancer.  The vaccine is administered every two weeks after the surgery for a total of six doses.

Image courtesy of Ohlfest Brain Tumor Lab website (http://www.braintumorlab.com/)

The University has had very good success with this method of treatment and, while there are no guarantees, we are hoping for the same outcome for Rilley.

Daily Planet Update:

Just to bring you up to date on the Daily Planet story that is being produced about Rilley's involvement with the clinical trial, story producer Michelle McCree and D.O.P. (Directory of Photography, English translation: really skilled cameraman) Brian Marleau came to the house late yesterday afternoon.  We did the initial interview, giving Rilley's history, detailing how Sara found this unique opportunity and outlining our coming "adventure".  They also shot general footage around the neighbourhood of the kids playing with Rilley and of us taking him for a walk.

Daily Planet Producer Michelle McCree and Director of Photography Brian Marleau

Rilley's Story to be Featured on Television

Yes, you read that right, Rilley's story is going to be featured on Discovery Channel Canada's daily science and technology program Daily Planet.  A camera crew will be following us down to Minneapolis to capture everything as it unfolds.  (Although we expect everything to go smoothly.)  The story will include interviews with the director of the Tumor Lab at the University of Minnesora, Dr. John Ohlfest and Rilley's surgeon, Dr. Elizabeth Pluhar.  This will give everyone a detailed explanation of what his treatment entails and hopefully it will convey a better sense of why we are making the long trek.  Once we know an air date for the item, we will post it here.

In other news:  Rilley's has added to his wardrobe!



Rilley with his new hooded coat.  He doesn't look too impressed, but it will keep him warm during the trip!

Sara and the girls went shopping this evening to get Rilley a new winter coat.  They want to make sure that he is nice and warm after his surgery.  It even has a hood so his shaved head will stay warm on the trip home.

Here are some interesting facts:

• Rilley is the last dog to be accepted into the Meningioma clinical trial at the Ohlfest Brain Tumor Lab. (Update: This fact was true at the time of the original post Oct. 28, 2010, but since then, whenever additional funding - grants, donations, etc. - has been received other dogs have been enrolled.)
• To date, he is also the only Canadian dog to be included in this particular trial.
• This study is being conducted to study the use of vaccines derived from Rilley's own tumour as a post surgical treatment to aid in curing the cancer.
• Positive results from some of the research done at the Brain Tumor Lab have prompted the Masonic Cancer Center at the University of Minnesota to begin recruiting for human trials for the treatment of specific types of brain tumours.
• Tumour and Tumor are the Canadian and American spellings of the same word.  So, no, we haven't been misspelling the word.  We use "Tumour" as the noun describing the mass in Rilley's head and "Tumor" when we are referring to the name of Dr. Ohlfest's clinic.

Rilley's Next Adventure

I realize that we just posted the last entry about an hour ago and I've been trying to build a little suspense, but through the wonders of Facebook, Sara has managed to give away what will hopefully be the turning point in Rilley's story.

As we had said, the cost of life saving brain surgery for Rilley is just not in the cards for us.  It is simply astronomical!  We have heard values approaching the $20,000 range.  However, being a family that will not simply give up, the ever resourceful (and internet assisted) Sara searched high and low, seeking out every lead she could to save Rilley.  Well, she just may have found it!

The University of Minnesota in Minneapolis is conducting a clinical trial into new treatments for brain tumours.  They have one specifically for Meningiomas and Rilley has been accepted into the trial!  In a nutshell, what this means is that the University will remove the tumour from Rilley's brain at no cost to us.  All we have to do is arrange for our own transportation and accommodation.

Ok, so where's Minneapolis in regards to Georgetown, Ontario?

Screech!!!!  1380km's????  Seriously????  A 16 hour drive????

Yes, it's not just a simple jaunt across the border to do some shopping, now is it?  Rest assured, we have looked into flights.  However, despite the possibility of Rilley having a seizure alone in a crate on the tarmac or down in the cargo hold, there are very few direct flights and even fewer that would allow a dog on board as they fly regional jets between Toronto and Minneapolis.  These aircraft are simply too small and they apparently do not have heated cargo holds.

Not being ones to shy away from adventure, we have decided to take the University up on their generous offer and in early November we will be packing up the car and pulling an all-nighter!  Get ready Rilley, we will be running the red-eye to Minneapolis!

Obviously, there is much more to this story and many more details to share about the University's study.  So until we have time to write another blog entry, here is a link to the Ohlfest Brain Tumor Lab at the Univeristy of Minnesota.

http://www.braintumorlab.com/

Where do we go from here?

Halloween 2007, Rilley dressed up in his Underdog costume that Sara had made herself!

So as I'm sure everyone is wondering...what are we going to do to help Rilley?  While we have managed to stabilize his seizures, which as we've been told, will always be a part of his life from this point on.  The only thing that we can do is to stay on top of the actual tumour.

Whenever we tell people about Rilley, one of the first questions we are asked is are we going to have him put down.  We can understand where this assumption comes from as any form of long care treatment can become financially impossible.  The diagnosis with MRI alone was in the range of $2200.00.  Despite the cost and the lack of pet insurance, this was something that we felt needed to be done in order to properly assess our options.  How could we treat something without knowing the actual cause?  We didn't want to give Rilley medications to treat something that we weren't sure what it really was.  In the end we managed to come up with a way to cover the MRI costs and we don't regret it.

Surprisingly, the current course of treatment through Chemotherapy three times a week, along with the steroids once a day and anti-seizure medication twice a day turned out to be reasonably affordable.  A five week supply of the chemotherapy drug Hydroxyurea costs roughly $48 at the local drug store.  So, all in all, not a bad price to pay to help our furry friend.  The down side to this is that all this medication will only keep the tumour at bay.  It will always be in his brain and there is the definite possibility that it could continue to grow.  At the moment, Rilley is perfectly healthy in every other way, save for the fact that he has a voracious appetite from all the medication!  However, just as with people, long term exposure to medications will damage his liver and if the tumour grows it will cause neurological deficits that will have a negative impact on his quality of life.  So, to answer the usual question, yes, he will have to be "put down" at some point in the relatively near future.

This left us wondering, what else can we do to help Rilley?  We can't just give up on him, he is a beloved part of our family...despite some of his naughty ways.  Our daughters would be totally devistated if he passed away.  Unfortunately, brain surgury can cost tens of thousands of dollars...we can't possibly do this without going bankrupt, can we?  Stay tuned....

This dog has more doctors than most people!

By now you've probably gathered that our Beagle, Rilley, has seen quite a few doctors since his initial seizure on August 10th and they have all been fantasic.  We would like to recognize them here:

Rilley's regular* veterinarian:

Dr. Stephanie Ewing

Mountainview Animal Hospital, Georgetown, Ontario

* We may say "regular" but she is far beyond your run-of-the-mill veterinarian!

   She is really patient with us and Rilley absolutely loves her.

   We think she is the only vet that he greets with a kiss!

Rilley's team of specialists:

Dr. Fiona James, Neurologist

Mississauga-Oakville Veterinary Emergency Hospital & Referral Services

Dr. Carolina Duque, Neurologist

Mississauga-Oakville Veterinary Emergency Hospital & Referral Services

Dr. Meredith Gauthier, Oncologist

Mississauga-Oakville Veterinary Emergency Hospital & Referral Services

These are the dedicated doctors that he has met so far.  We are about to embark on a new adventure in Rilley's battle against the tumour raging in his head, which is the true reason behind starting this blog.  Rilley will meet many more dedicated professionals on his journey!

A bit of history

About 7 years ago Rilley came into our lives by way of the Orangeville SPCA.  He was abandoned there by his previous owners when he was about two years old.  Since then he has been a complete terror.  Don't get me wrong, he is a very loving dog, adored by everyone in our family...but.... We have lost count of the damage he's done!  He's destroyed three seatbelts in our old van, one seatbelt in one of our current vehicles.  Eaten a cell phone (well the top of it anyway), munched on a nightlight bulb.  Devoured 400 grams of dark chocolate...leading to stomach pump #1.  Licked his way to Nutella induced stomach ache nirvana...stomach pump #2.  Hijacked toast straight out of the toaster within moments of it popping up.  I can go on....

Rilley's ad that was on the Orangeville SPCA's website.  Even before meeting him we knew he was the one!

On the afternoon of August 10th, an otherwise healthy Rilley came blasting into the bedroom as if he was chasing something.  Then, without warning, he dropped to the floor and into his first seizure right in front of Sara.  She immediately called a neighbour for help and together they rushed him to the vet.  Over the next three weeks, life seemed to return to normal.  We thought that perhaps it had been an isolated incident.  On the Labour Day long weekend we found out how wrong we were.  He suffered two more seizures within 24 hours leading us to do a late night run to a local emergency vet clinic.  When the work week resumed, we consulted our regular vet who informed us that all indications point to a brain tumour diagnosis.  Later that week we took him to a veterinary neurologist who recommended an MRI.

The MRI was done immediately, and when we were brought into the consultation room, we didn't need a medical degree to recognize a tumour on the MRI.  We were devasted.

MRI view from the top showing Rilley's brain.  The light area within the circle is the edema directly above the tumour.

 
We promptly booked an appointment with the oncologist who gave us a very poor prognosis for Rilley.  Rilley was immediately started on Phenobarbital to help control the seizures, Dexamethasone, a steroid to receed the edema that accompanied the tumour and the chemotherapy drug Hydroxyurea to slow the growth of the meningioma tumour.

MRI view from the side showing the tumour (round object) and the edema (flat object next to the tumour).