Friday, December 31, 2010

2011 is upon us, my reflection on the past year

Rilley, the Christmas Beagle has changed hats today and is looking forward to what the new year will bring. I just want to take this time to reflect on 2010.

The year started off well enough, the first three months seemed to race by as I travelled to Vancouver for the 2010 Olympic Winter Games. Once I returned home after six weeks away, time didn't seem to slow down. It felt like we raced through spring and right into summer and everything seemed to be going along just as it should. Rilley seemed to be happy enough in his usual routine of sleep, eat, walk, nap, eat, sleep, all the while managing to fit in the odd attempt at stealing someone's lunch. Life has been good for the great Beagle of Georgetown who thinks he owns the world, well, the sidewalk anyway.

People who know me, our daughters as well, can attest to the fact that I've never been one to express much emotion towards our four legged companion. I have to admit that 7 years ago I wasn't thrilled about the idea of getting a dog in the first place. However, we do live in a democracy so I graciously accepted the 3-1 vote and went along with the status-quo as long as we adopted a "shelter dog". As the years went by I staunchly insisted that I did not love this dog, but I merely "tolerated" him. However, deep inside I knew that despite all of his mischeivious behaviour causing a lot of trouble around our household, I could never imagine ever giving up this beast of the Beagles. Yes, he began to grow on me...and I had to wonder how, at barely two years old, he could ever have ended up at the Orangeville SPCA.

Then August 10 of 2010 came along and it all changed. If you've been following this blog you will remember that was the date when Rilley experienced his first seizure and our journey into tumour-land began. At first, perhaps naively, we thought that this could've been an isolated incident. Without retelling everything that has been told, this proved not to be the case. Aside from all the disappointment and despair of the situation, a new, positive thing began to emerge. I began to realize how much a family pet can work its way into your life. There was no way I could fathom letting him go. Yes, he means the world to our two daughters, but I am slowly coming to terms that during all those years of merely tolerating him, he was really and truly growing on me. And this, my friends and kind blog readers, is my reflection for 2010.

However in the process we have met many amazing people and I am thankful for all the veterinarians that have help us along the way, such as Dr. Ewing (Mountainview Animal Hospital, Georgetown), Drs. James, Duque and Gauthier (Mississauga-Oakville Veterinary Emergency Hospital) on this side of the border. I am also in awe of all the research being done at the University of Minnesota, their College of Veterinary Medicine and the Ohlfest Brain Tumour Lab. Especially the surgical skills of Drs. Pluhar and Hunt and the medical wizardry of Dr. Ohlfest. Finally, let's not forget Jessica Bedi's determination in dealing with cross border vaccine shipments!

So as 2010 draws to a close, we are making plans for our first return to Minneapolis for Rilley's follow up visit and MRI. This will take place at the beginning of February and I hope to be posting some positive notes and images during that trip. Finally, we would like to thank everyone for your continued interest in Rilley's story and we would like to wish everyone a very happy and prosperous new year!

Sincerely,
Roy.

Oh, in case you're wondering, Rilley has been curled up at my feet as I sit on the bed writing this blog entry:

Thursday, December 30, 2010

Eight Weeks Since Surgery !!!

Today not only marks eight weeks since Rilley had his tumor removed, but also that he has remained SEIZURE FREE since the surgery. While the possibility still remains that Rilley may have a seizure, as each day passes and he doesn't have one I relax just a little more ... I don't find myself calling someone to go and check on him while I am out.

One thing which people often ask us since Rilley had the surgery is if his personality has been affected. I can certainly attest that he is the same mischievous, naughty, yet lovable dog he always was. If anything is more puppy like than ever before. I often say that having Rilley is like having a toddler in the house. I never quite know what trouble he is going to get into or mess will greet me when I walk through the door.

He has always enjoyed burying things in the backyard ... when the ground thaws in the spring we often find an assortment of stuffed animals and various other goods that Rilley has dragged out. He recently decided it was too cold outside to bury anything so we are finding things in our closets, under beds and under the couch cushions. I am surprised that Winnie the Pooh has made it this long ... that poor stuffy has been to Minnesota and back and been dragged around the block more times than I can count, yet Rilley will not let it go.

Rilley and his beloved Winnie

Monday, December 27, 2010

A Very Rilley Christmas

Christmas has come and gone for another year and we all hope that it was a happy time for everyone.  With nothing new to report, a refreshing change, we decided to post a few pictures from Christmas Day.

Presents?

Tasty presents!

One happy pooch, but are there any more presents?

All dressed up for Christmas dinner, thanks to Elizabeth!

Speaking of dinner.  Here is Rilley's Christmas feast!
On the fine china, no less!

Rilley enjoying his turkey and all the trimmings!

Okay, so maybe it wasn't the best thing given his slight weight problem, but we think that after everything he's been through, he deserved a nice meal at Christmas!  Here's looking forward to New Year's Eve!

Saturday, December 25, 2010

Rilley's Christmas Greeting

It is definitely a very merry Christmas around our house this year!  Rilley got to enjoy another round of night time patrols to keep an eye out for Santa, soon family will be gathering for dinner and he will be hoping something will drop, and not to mention presents, lots and lots of presents!  In all seriousness, most people would not have had the opportunity to do so much for their pet.  It seems as though all of the stars were aligned in Rilley's favour as the day he was formally diagnosed with a meningioma, September 10, 2010 to be exact, we received an email from Dr. Ohlfest confirming that Rilley was a possible candidate for the clinical trial at the University of Minnesota.  What are the chances of being given a shot at being accepted into the last opening of such a ground breaking study to treat his exact type of tumour? And right when we needed it the most?  Had it had not been for all the caring professionals, we would not be celebrating this Christmas with quite as much enthusiasm.  This experience has truly been the best possible present.

Rilley would like to wish everyone
a very Merry Christmas!

Thursday, December 23, 2010

MILESTONE: Vaccine Number 3!

Poor Rilley, losing more of his fur to
make way for more injections!
Rilley has now reached another milestone. He received his third vaccine today...he is now half way through the bi-weekly treatments! The nice thing is, given that he doesn't mind going to the vet and obviously trusts Dr. Ewing, he didn't even flinch when he was given the injections. While his fur is growing back nicely on the top of his head, Dr. Ewing noted that the areas on the back of his neck, where the injection sites are, has been slow to regrow. She figures that it may be a result on the vaccine/immune system's effects to the immediate area. Now, to add to his "fur-challengedness", Dr. Ewing had to shave some more of his original fur further down the back of his neck! This was necessary to make room for the injections as we cannot reuse prior injection sites.

Rilley receiving the second of two injections
during his third vaccine treatment.
When we were in Minneapolis, Dr. Pluhar had mentioned to us that the first couple of vaccine treatments should be fairly uneventful, however after this particular injection Rilley may experience some of his pre-surgery symptoms. These could even include seizures. It isn't guaranteed that he will experience this, but it isn't uncommon. As long as any seizure activity remains fairly minor (not lasting for long periods) we shouldn't be too concerned and simply help him through it. Hopefully this isn't something that Rilley will run in to.  One extraordinary thing happened today. Rilley's vaccine shipment made it all the way from Minneapolis in less than 24 hours and without any intervention on this end! It was even delivered directly to Dr. Ewing's office without Sara having to pick it up from the FedEx facility at Pearson International!

All in all, for a "vaccine-day" it went very smoothly. He was all done by 12:30pm leaving us time to do some Christmas shopping! We leave you with a shot of Rilley's latest loss of fur....
Rilley's latest bald spot.

Tuesday, December 21, 2010

Changes to Rilley's blog

New features have been added to the blog.
As you may have noticed, some changes have been made to the layout of the blog.  We've added a listing of the 10 most popular posts to the left column and a sign in box to the right column.  This can make it easier for you to follow new posts to the blog.  Also, if you scroll to the bottom of the page we've added a collection of links to sites that are related to Rilley's story (these will be updated as necessary).  We hope that you'll find these additions useful and informative.

Rilley is still doing well and appreciates everyone's interest in his story.  He is due for his third vaccine treatment this Thursday (Dec. 23) and we'll post an update then.

Thursday, December 16, 2010

Physical Signs of the Vaccine at Work

There is now some physical evidence that the vaccine seems to be doing its job.  The vaccine is comprised of two main components.  Irradiated tumour cells, which were harvested from the tumour removed during Rilley's craniotomy and immune activators.  The irradiated tumour cells are dead cells which cannot cause any recurrence of the cancer.

The vaccine is injected intradermally (between skin layers) in two sites at the back of Rilley's neck.  Each site receives a mere 0.5cc of vaccine and the injections are intended to introduce the cancer cells to his body in order to force his immune system to seek out and destroy them.

Our daughters noticed a red area on the back of his neck.  When we had a look we noticed that Rilley's skin had turned red at one of the sites of his initial vaccine injections and his skin appeared to be breaking open.
You will notice on the right side a red area on the skin.
If you click on the image to enlarge it, you will get a better view.
Obviously, we were concerned so we sent photographs off to Drs. Ohlfest and Pluhar back at the University of Minnesota.  Dr. Ohlfest said that it was most likely a result of Rilley's body killing the skin cells that were infiltrated by the injected tumour cells...a very good sign that the vaccine seems to be working.  Basically, his body is learning how to kill cancer cells, or more accurately, any cells that are part of a meningioma.  Dr. Ohlfest actually summed it up quite well when he wrote to us saying that "this is very bad news for any tumour cells left behind after surgery".  Yes, Rilley's building his own army to seek and destory the enemy that was in his head!

So while this seemed at first to be a possible negative reaction to the vaccine or possibly a skin infection, it turned out to be a very good sign.  It's amazing what you learn, especially when you have two brilliant doctors who are so willing to share their knowledge and don't hesitate to answer your questions!  (No matter how many you may have!)

Sunday, December 12, 2010

Rilley's fur is on its way back!

One thing we noticed this past weekend is that Rilley's fur is coming back with a fur-y!  (Pun intended.)  If you were to look at him face on, you would be hard pressed to tell that anything had happened.  Below is a comparison of two photos taken exactly three weeks apart.
Rilley's fur, then (three weeks ago) and now!
The one thing we had been wondering was whether or not the white stripe on his face would grow back. When he had been shaved, you could see the pigmentation in his skin which matched his fur colour for those areas, but it looked quite dark up the middle of his face.  However, as you can tell this distinctive mark of his is back!

Other news from this weekend is that he did not seem himself.  As you may have figured from our last post, Rilley had his second round of vaccine injections on Thursday.  One difference about this round was that he really seemed to be under the weather on Saturday.  From reading this blog, you may have figured out that he is very food motivated we knew something was not right when Sara sat on the sofa with a snack, and all Rilley could muster was to raise his head and have a look, as opposed to getting right in her face demanding some of the food!  After consulting with Dr. Ohlfest, it turns out that he may very well have had a low grade fever and may seem sluggish for a few days.  He explained that this is normal as long as it doesn't last for more than a couple of days.  We also noted that his injection sites felt a bit warm.  Apparently this is an indication that more of his immune system is recognizing and working on the tumour cells, which in turn is a good sign that Rilley's body is reacting positively to the vaccine.  However, we are happy to report that tonight he seems to have bounced back quite quickly.

Lastly, thanks to everyone's kind interest in Rilley's story, as of this writing our little blog has had 2016 visits since we started it in late October.  A large part of that is due to the spike in traffic as a result of Rilley's story airing on Daily Planet as well as the front page article written by Lisa Tallyn in the November 30th edition of the Georgetown Independent.

Thursday, December 9, 2010

Rilley's 2nd Vaccination - More Shipping Frustrations!

It has been two weeks since Rilley's last vaccination and the major headache getting that one through customs.  Today he had an appointment for his second of six rounds and you'd think that everything would now be in order and the shipment would happen smoothly.  Well, guess again and this time I can't even say it was the government's fault.  From what I can gather, and hopefully it is as factual as it can get, it seems that someone at the courier company took it upon themselves to decide for Canada Custom's what they would or wouldn't do.  Instead of this person allowing the Canadian Border Services Agency to decide for themselves, they refused to pass the package onto the people responsible for what comes into the country!
The precious package!
Styrofoam container, dry ice and a tiny, tiny vial containing the vaccine.
The shipment had been held for clearance in the courier's facility in Mississauga since early this morning and it was finally released to us just before 4pm!  On top of all of that, they made us come and get it as they didn't want to touch the package!  Apparently they read that it contained irradiated cancer cells and thought that they'd get cancer from touching it!  Now I may not be a doctor, but the last time I checked cancer was not contagious and I know that anything that has been irradiated is most definitely dead!  Come on people, use some common sense!  Not to mention that Health Canada provided a "No Objection Letter" stating that they had no reason to stop the package from entering the country and said letter was attached directly to the outside of the package!
The "No Objection Letter" provided by Health Canada securely affixed to the side of the shipping contianer.  Can you believe the courier claimed it wasn't with the package?
I think you can understand how frustrated we are!  Our caring Vet, Dr. Stephanie Ewing, neurosurgeon Dr. Pluhar as well as lab staff at the University of Minnesota had to take time out of their busy schedules once again to deal with what should be a simple process.
The priceless cargo.  Placed next to a car key to give you a sense of how little vaccine is actually shipped.  The vial is only about 1/3 full.

Sunday, December 5, 2010

MILESTONE: One month since surgery

Rilley's fur is slowly beginning it's own journey back to his head!
This weekend has marked one month since Rilley underwent the craniotomy to begin his tumour free life!  He is doing extremely well and the Great Canadian Bald Beagle is beginning to show serious signs of regaining his fur.  The best news is that he has now been seizure free for over four weeks.  He is doing so well that he can now be left for a few hours on his own.  We just need to make sure that there is no food out as he is much more active and will get things off the counter once again!  (To most people, that may be a sign of poor behaviour, but no matter how annoying it may be, to us it is a sign that he is getting back to his old self.)

This coming week, Rilley will be receiving the second of his six rounds of vaccines.  We are hoping that the shipment will be much smoother this time around and actually make it to Dr. Ewing's office without any intervention!

We've noticed the increased traffic to the blog since the television and local newspaper stories from early in the week.  As of this writing, the blog has had 1853 visits!  We just want to thank everyone for taking such an interest in Rilley's story and hope you will continue.

Wednesday, December 1, 2010

UPDATED: Daily Planet show now online!

UPDATED!
If you missed Rilley's appearance on Daily Planet, go to the show's webpage to see it online.

There is a new link to see Rilley's story where it will be available for a long time:

I would like to thank those who maintain the http://www.discoverychannel.ca/ website for creating this special link for me.  In particular, Heather Mahmood who made it happen.

The original link I posted in this space pointed to the latest online episode which is changed everyday.  However, I would like to leave the link to that available as I believe the show is worth watching, no matter what stories are presented.

The direct link to Daily Planet's page on the Discovery Channel Canada website is: http://www.discoverychannel.ca/Showpage.aspx?sid=13287

Tuesday, November 30, 2010

Daily Planet story an excellent look at the Ohlfest Brain Tumor Lab

Rilley on the set with Daily Planet host Jay Ingram.
So Rilley's moment in the spotlight is over and he is lying beside us asleep on the bed, too tired to sign any autographs.  This gives us a moment to thank Daily Planet for doing such an excellent job documenting the wonderful work being done at the University of Minnesota and the Ohlfest Brain Tumor Lab.

Watching the story tonight reminded us how fortunate we are to have been granted the opportunity to take part in this clinical trial.  Remember, this story is far from over, the clinical trial continues as Rilley will be followed closely by the University throughout the next year and we will be continuing to keep this blog up to date.

Weblinks:
Discovery Channel Canada:  http://www.discoverychannel.ca/
Daily Planet: http://www.discoverychannel.ca/Showpage.aspx?sid=13287
Ohlfest Brain Tumor Lab:  http://www.braintumorlab.com/

TONIGHT: Rilley's 15 Minutes of Fame!

Remember tonight Rilley's story will air on Discovery Channel's show Daily Planet at 7&11pm ET and 8pm for those on the west coast.  There is also an article in today's edition of the Georgetown Independent!

Photo by Ted Brown
(c)2010 Georgetown Independent and Acton Free Press


To see the article, follow this link:
http://www.insidehalton.com/news/article/910093--family-pet-aids-u-s-cancer-study


Photo by Ted Brown
(c)2010 Georgetown Independent and Acton Free Press















 

Friday, November 26, 2010

Finally...a vaccine!

"What do you mean more needles?"
After many hours of phone calls between numerous people, government agencies and veterinarians we finally secured Rilley's first vaccine!  The package was intact and the dry ice was still keeping the contents viable.  Given all the confusion and delays, we asked FedEx to hold the package at their facility so that once all the requirements were met we wouldn't need to wait for it to arrive by truck.

Finally, just before 1pm today, the CBSA (Canada Border Services Agency...aka Canada Customs) granted FedEx permission to release the vaccine.  Sara picked it up took it straight to Dr. Stephanie Ewing's office so that it could be unpacked and given time to warm up.

Rilley's injection sites marked by blue squares.
Rilley had his appointment for the first round of injections at 3:20pm and everything went smoothly.  We are happy to report that Rilley is none the worse for wear and was just a little ticked about the shots.  He will receive five more rounds of vaccinations in two week intervals.  The next four will be on this side of the border with the final injections to be administered back in Minneapolis during his three month follow up visit with Dr. Pluhar.
A closer view of the vaccination site.
Let's hope that the next shipments aren't as stressful!

Thursday, November 25, 2010

Yet another delay for Rilley's first vaccine treatment

As you know, earlier this week Rilley's vaccine was granted approval to be shipped to Canada.  Despite the fact that this regulartory red tape forced us to delay his first treatment by a week, Dr. Ohlfest didn't see this as a serious matter.  We had an appointment with Dr. Ewing booked for 5:20pm today.  Just prior to 4pm her office called to say that they hadn't received the shipment yet.  Sara called FedEx to find out what was going on.  As it turns out, despite all the efforts by Dr. Ewing here in Georgetown and Jessica at the University of Minnesota to ensure that all the proper paperwork had been completed, Canadian Border Services Agency (Canada Customs) have decided not to release his vaccine shipment!  According to them, a commercial invoice is missing, which the University insists was included.

Ok, so it's a paperwork snag...normally, not a big deal.  Just get it straightened out and all is well, right?  Well in this case, any delay can become disasterous.  The vaccine is packed in enough dry ice to keep it viable for 3 days.  However, it's been in transit since yesterday morning.  FedEx wanted some extra time to allow for the inclement weather in Minneapolis and the American Thanksgiving.  So the transportation time has used up two of the three days and as of this evening we weren't able to get it released from Customs.  This means that if we are unsuccessful in having customs release the vaccine tomorrow it will most likely spoil and another one won't be ready for two weeks.  This can't possibly be good for the success of his treatment.

Hopefully tomorrow will bring better news.  So we are keeping our fingers crossed again!

Wednesday, November 24, 2010

Rilley's television debut!

Mark your calendars!


Rilley will appear on Discovery Channel Canada's nightly science show Daily Planet on Tuesday, November 30th at 7 & 11pm ET and 8pm PT!  Not only will they be airing the story that was shot both at home and the facilities at the University of Minnesota but Rilley will be making a special in-studio appearance!

We're sure he will stick around after to sign autographs.... ;^)

(We've updated the blog's banner with the show date and time for easy reference.)

Tuesday, November 23, 2010

Our little blog has had over 1000 hits!

As of this writing, our little blog about Rilley's adventures in tumourland has been viewed over 1000 times!  1062 to be exact and that has been in just one month.  We just want to say thank you to everyone for taking such an interest in Rilley and the work being done at the University of Minnesota and Ohlfest Brain Tumor Lab.  Remember, the surgery may be over but the rest of Rilley's treatment is just beginning!  Please continue to read the blog and we will keep you updated on every step along the way!

Sincerely,
Roy and Sara.

Our Little Elf

This is not at all a serious post.

Since last Christmas I have had Rilley's Christmas bell collar hanging on the key hook (yes I know I never got around to putting it away!!!). After Rilley was diagnosed with the brain tumor I would look at it and wonder if he would be here this year to wear it. I am confident that he will, but the problem is that his hair hasn't grown back enough yet to wear a regular collar yet.

I had to remedy the situation, so today when I was in PetSmart I found the cutest elasticized elf collar that can loosely go over his fur.

He looks adorable and reminds me of the "mischievous" little elf he is.


Rilley Our Christmas Elf.

Monday, November 22, 2010

It's Official - The vaccine has been approved to cross the border!!!!

First thing this morning we received an email from Jessica at the Ohlfest Brain Tumor Lab confirming that the vaccine has been granted full approval to enter Canada!  She will be packing it on dry ice and shipping it on Wednesday.  It should safely at Dr. Ewing's office by late afternoon on Thursday and Rilley has his appointment booked for 5:20pm.  Now that all the paperwork as been filled and rubber-stamped the vaccine will be shipping every two weeks for four more shipments.  The sixth and final vaccine will be administered during our three month return visit to Dr. Pluhar at the University of Minnesota.

Dr. John Ohlfest (centre) and his team at the Ohlfest Brain Tumor Lab.
The creators of Rilley's vaccine.
Another important development happened today as well.  Sara took Rilley to see one of his local Neurologists, Dr. Fiona James, for a follow up visit.  Dr. James is the one who had the originally diagnosed Rilley's meningioma tumour on September 10.  She ran a complete neurological exam and gave Rilley a perfect bill of health...well, almost.  It seems our dearest Rilley has another problem.  His girth!  He has managed to eat his way up to 50 pounds!  Sure, we can blame the medications.  Some of them have been known to increase a dog's appetite exponentially, but he is a Beagle after all...gluttony is one of his biggest attributes.  As for the neuro exam, he passed that with flying colours!  Dr. James even said that if it wasn't for the bald head and massive scar, no one would know that he had ever had a tumour.

The Mississauga-Oakville Veterinary Emergency Hospital.
The offices of Rilley's Neurologists, Drs. James and Duque, and Oncologist, Dr. Gauthier.

Over all this has been a great news day for Rilley!

Saturday, November 20, 2010

23 Seizure Free Days and Still Counting!!!

It may not seem like a long period of time, but considering before we left for The University of Minnesota and Rilley was having seizures on an almost daily basis this is absolutely incredible.

23 days is the longest period of time that Rilley has ever been seizure free. It is absolutely fantastic and really makes us realize that the surgery was definitely worth it.

Still no news on whether the vaccine has been approved for shipment, but I am still hopeful that it will be here early next week.

We (well I must admit I) am slowly learning that I can leave Rilley for short periods of time and he will be okay. I realized when I came home today that I didn't even check if he had had a seizure. I am slowly getting used to the "new reality" of life with Rilley without a brain tumor.

Enjoying his two favourite activities...sleeping and cuddling with Pooh bear.

Friday, November 19, 2010

Still waiting...and Rilley had a really good day.

We still haven't heard anything on Rilley's vaccine's approval.  Apparently a "case manager" has been assigned and we are trying to stay positive.  Hopefully the speed of this process doesn't take as long as government decisions stereotypically seem to!  We are still holding on to Dr. Ewing's belief that we will most likely see the vaccine arrive at some point next week.

Rilley had a really good day today.  He went for a longer walk...of his own volition...and then...he hopped up on the bed and pretty much slept for the rest of the day.  There are also other signs that he is on the mend.  Prior to the surgery, he wasn't able to sit on the floor without his rear side sliding away and now there is no sign of that.  Sara did some research and found that it definitely was a sign of neurological deficits.

So here's hoping that everything gets cleared up soon!  Again, we appreciate everyone's efforts and hopefully next week's Thanksgiving holiday in the U.S. doesn't inadvertently cause it's own delays.

Thursday, November 18, 2010

The stitches are out...and some thank-you's!

Rilley without stitches!!!!
Ok, so it's not big news but we promised to post a picture of Rilley without his stitches.  True, he doesn't really look all that different either but it's nice to post something fun for once.  He was such a good boy for it too.  I guess it helps that he really loves Dr. Ewing and just sat there.  (We don't think he even noticed the first few come out.)

We spoke with Dr. Ewing about the whole issue surrounding the vaccine and she is confident that we will be back in her office next week for the first shot.  Unfortunately it sounds like the poor girl at the University of Minnesota had a rough time dealing with the many levels and various agencies of the Canadian government until she found the right one.  Jessica, we really appreciate everything you have done and everything you had to put up with.  Thank you as well to Dr. Ewing (Mountainview Animal Hospital, Georgetown) for completing all the paperwork and to Dr. Gauthier at the Mississauga-Oakville Emergency Hospital for offering to do whatever she could as well.

There was even an offer of help from an old friend and his wife (also a vet) for offering to contact whoever necessary to help make it happen...thanks Mark and Dr. Jen!  Last names withheld to protect the innocent. ;^)

Off to the vet...bye, bye stitches!

We're heading off to see Dr. Ewing shortly to have Rilley's stitches removed.  There may also be a new development in the vaccine versus the border issue.  Once we have official word we will post it here.  At the very least we will post a picture of Rilley sans sutures tonight!

Wednesday, November 17, 2010

We've hit a setback

The U.S.-Canada border in northern Minnesota. (MPR Photo/Bob Reha)
Tomorrow marks Rilley's second full week since his brain surgery and we've run into a potentially serious setback.  There is a bureaucratic roadblock that is preventing the Ohlfest Brain Tumor Lab from shipping his vaccine.  Apparently the Canadian Government won't allow the vaccine into the country without regulatory approval from some form of Veterinary agency (we're not sure what that exactly means).  While there are people at the University of Minnesota, the Mississauga Oakville Emergency Hospital as well as Rilley's own vet doing their best to help this is really worrying us.  The vaccine is the key component to his treatment.  Without it the tumour will eventually come back, making all of the effort done so far seem like it was for nothing.  We are hopeful that someone on either side of the border will be able do something to get this moving but all we can do for now is wait.

Tomorrow, the stitches come out!   But the vaccine can't get past the border.

Sunday, November 14, 2010

The First Vaccine is in the Works!

It may be a Sunday, but we just got word today that things have been set in motion for Rilley's first vaccine from Dr. Ohlfest's Brain Tumor Lab!  The lab will be shipping it directly to Rilley's regular vet office and Dr. Ewing will be administering it herself.  Rilley has an appointment this Thursday (exactly two weeks since his surgery) to have his stitches removed so we have our fingers crossed that his vaccine will avoid any hang ups at the border so that it can be here in time.  We are very excited!

Our girls and their favourite pooch!
They are a big part of the reason we sought out the clinical trial at the University of Minnesota.

Saturday, November 13, 2010

Back To His Old Self....

We've been worried the last few days that Rilley wasn't quite himself. Trust me he has certainly had no trouble eating us out of house and home, but one of the things which I truly enjoyed before the surgery was talking him for a morning walk with my coffee after dropping the girls off at school in the morning.

Now I know it has only been a little over a week since his surgery, but he almost seemed to be hating being outdoors. We were noticing that sunlight bothered his eyes to the point that even when he sunbathed at the front door he would make sure his back was in the sun and not his face.

I am happy to report that it appears this was a temporary side effect and this afternoon Roy & I were able to enjoy a beautiful walk with him. The funny thing was that he dictated where we walked to and he led us to the vet's office.

It is so wonderful to have our Rilley back and be able to enjoy all the things that we did before with him.
Sara, Rilley and our eldest daughter.

Thursday, November 11, 2010

One week out....

Rilley sleeping on the floor with one of his favourite stuffed animals.
Today marks exactly one week since Rilley had his brain surgery to remove the meningioma.  As you can tell from the photo above, he is doing just fine.  He is even beginning to grow some "peach fuzz" on his bald head and the incision is healing nicely.  The stitches will be removed in one more week, around the same time he will receive his first dose of the custom made vaccine.  When Rilley was discharged from the veterinary hospital, we were given instructions to keep him as still as possible and to not allow him to jump on and off the bed, nor to take the stairs.  Well, all we can say is...we've been trying, honest we have, but it is becoming extremely too difficult to stick to all the rules.  Regardless, he is continuing to recover very nicely.

The Crazy Cost of Medications
As a result of the lab work done in Minneapolis that revealed Rilley's high liver enzyme levels we have begun to back off his Phenobarbital and introduce his new anti-seizure medication Keppra.  We were warned that the new medication would be more expensive than the Phenobarb and how true that is!  To give you an idea, when Rilley was first put on the medication, we purchased 500 tablets of the Phenobarbital for roughly $84 CDN, this would last us around 100 days.  Conversely, 100 Keppra tablets cost $154 CDN and these will only last 22 days and he will be on this medication for the rest of his life.  If only I could add Rilley to my work benefit plan!  ;^)

Searching online Sara discovered that we could order 100 tablets of the generic version for just $28 USD but the online pharmacy doesn't deliver to Canada.  The ironic thing is, the pharmacy is located in Canada!  Surrey, BC to be exact!  Tell me that's fair!

Granted, Rilley will soon be completely off of his steroids, which is a very good thing, but the cost of that is negligible in comparison.

Tuesday, November 9, 2010

The results are in...Rilley's tumour has been graded!

We received a call from Rilley's local vet tonight.  Dr. Ewing had been speaking with Dr. Pluhar in Minneapolis and Rilley's tumour has finally been graded.  When Rilley had his surgery last Thursday, it was thought that because the tumour had grown so much and had begun to attach itself to his brain that it would receive a grade of II or III. 

For reference, World Health Organization (WHO) defines the various grades of a meningioma as follows:
Rilley before surgery with his original MRI superimposed.
Grade I: Benign Meningioma
Grade II: Atypical Meningioma
Grade III: Malignant (Anaplastic) Meningioma

Obviously we've been hoping that the tumour would not receive one of the higher grades...so, drum roll please!


Rilley's meningioma tumour is a ...GRADE I!!!!

We cannot say how relieved we were to get this news!  It means that it is the grade of meningioma that has the lowest risk of recurrance.

Monday, November 8, 2010

The long and winding road...a reflection on our first trip to Minneapolis.

Driving down the endless road!
So the long road home gave us time to reflect on everything that has happened since our departure last Tuesday evening.
Travelling home:
Having a rest in Wisconsin, the state that never ends!

When we originally arrived in Minneapolis we pretty much rolled right into the parking lot at the Veterinary Medical Center and walked straight into the pre-op appointment which included the presence of the Daily Planet camera.  As you know from the post that day we were incredibly tired and it took a lot of concentration to focus on the discussion.  We didn't have the camera there to get ourselves on TV, we simply want everyone to know of the incredible work being done in Minneapolis to help find a cure for brain tumours in dogs and humans alike.  We must thank Director of Photography Jay Kemp and Producer Michelle McCree for making sure that the camera was there to record the events without being intrusive.  Honestly, we can't say that we really noticed the camera at all and the appointment ran very smoothly.  We were extremely excited for what the following day would bring.

Asleep on the long ride home

Everyone expected Thursday's surgery to run smoothly as all the preparations had been in place for some time.  Dr. Pluhar had the original MRI scans that were done at the Mississauga Oakville clinic and all of Rilley's medical history (related to the tumour).  Even the physical exam done during the pre-op appointment was normal.   We received regular updates via Brian, the communications point-person for the television production crew.  Then when Dr. Pluhar came out while Rilley was moved from the OR to the MRI she told us that things had not been as simple as had been expected.  It seemed that everyone was shocked to learn that the tumour had grown much quicker than expected and that it had begun to attach itself to Rilley's brain.  Dr. Pluhar had hoped to remove the tumour in one complete piece, but given this new development she had no choice but to cut it into pieces in order to remove it.  This gave us a dose of reality and the true weight of Rilley's predicament began to sink in.  While it turned out that Dr. Pluhar skillfully removed the tumour despite the increased difficulty we realized that had we not made this journey, our beloved Beagle would have only survived for another week or two.

This development made a lot of recent events make sense.  Within the week previous to our departure Rilley had numerous seizures in greater frequency and he had begun to lose some control over his bladder.  We had actually commented that something seemed wrong and that things appeared to be getting worse.

Thankfully, we got to Minneapolis in time for the tumour to be stopped.  Dr. Pluhar literally ended up saving Rilley's life.  It appears that the only consequence to the change in his tumour is that it of a more serious grade.  We are still waiting to find out what grade of meningioma the tumour is but it doesn't change Rilley's course of treatment.

Dr. Pluhar getting Rilley
ready to be discharged
In two weeks, Rilley will have his stitches removed and he will receive the first of his vaccine injections.  The vaccine takes two weeks to develop and will be shipped directly to Rilley's regular veterinarian, Dr. Stephanie Ewing.  She has kindly agreed to administer the shots.  Luckily, Rilley loves Dr. Ewing, so he should be pretty happy to go see her on a regular basis.  He will receive an additional five rounds of vaccinations at two week intervals.

We also learned during our visit that Rilley's liver enzymes were at extremely high levels, most likely due to the Phenobarbital anti-seizure medication that he has been on.  This will now be replaced with another anti-seizure medication called Keppra which is not processed as intensely by the liver.

Rilley will be making return trips to see Dr. Pluhar at the University of Minnesota in three, six and twelve months for follow up MRIs and blood work.  But for now, he seems to be happy, healthy and back to his old self...causing trouble.

Sunday, November 7, 2010

We're home, finally!!!!

After nearly 20 hours on the road (construction, doggie-breaks, wrong turns, etc.) we are finally back in Georgetown.  We're off to bed and will update the blog in the morning.

Goodnight!

Saturday, November 6, 2010

6:30am in the Twin Cities....

We're packing our bags and heading out for the 16 hour drive home.  After a not so restful night with a bunch of drunk, rowdy, not to mention fighting, hotel neighbours we're looking forward to getting home.

Rilley can't wait to see everyone, especially the girls!

Friday, November 5, 2010

Rilley is out of hospital and resting comfortably at the hotel

Rilley's poses with his neurosurgeon, Dr. Elizabeth Pluhar during his discharge from the Veterinary Medical Center. 
Rilley has amazed everyone, even the professionals at the Veterinary Medical Center at the University of Minnesota.  Less than 24 hours after his surgery he was discharged to us and is now resting comfortably at the hotel.

Rilley resting comfortably back at the hotel.  Don't let the scar fool you, he is pretty much back to normal.
We've even been given the go-ahead to begin the long trek back to Georgetown tomorrow.  So the girls will be able to see him before they go back to school!

Looking at the post-op MRI it is amazing to see how Rilley's brain had reclaimed the space taken up by the tumour.  The University will be providing us with copies of the images and we will post a comparison once those arrive back home.  Despite the fact that the tumour had begun to attach itself to Rilley's brain tissue, the experts agree that the tumour is completely gone.

Incidentally, on our way to pick Rilley up this morning, we were discussing that we had arrived in Minneapolis just in the nick of time.  Even though a meningioma is considered a slow growing tumour, had it been left in Rilley's head for any longer his life with us would have been cut much shorter than we had expected.  But now we know he is tumour free and ready to enjoy his life for the foreseeable future.

We are very excited to have him back with us and are looking forward to getting home.  We will post more about details about what are the next steps will be in the days to come.  Not to worry, this blog will continue with updates as he receives his bi-weekly vaccines and throughout his 3, 6 and 12 month visits back with Dr. Pluhar and beyond!  Yes, we will be doing the 32 hour, round trip trek three more times!  Despite the awesome work being done here and what looks to be fantastic results for Rilley, I am really not looking forward to those trips.  Does anyone know any nice people who would donate their private jet and/or local condo?  ;^)

The Morning After....

Dr. Pluhar just called to give us the morning update on Rilley.  He's been taken off of fluids and has had his catheter removed.  She told us that he is doing really, really well this morning.  So well, in fact, that he is trying his best to dig his way out of his cage!  Obviously, this is great news for us, but unfortunately jeopardizes any chance of Sara going to the Mall of America (America's largest mall), and to a lesser extent, of us having a quiet dinner tonight as I'm sure Rilley is ready to eat as much solid food as he can get his jaws on!

We will be meeting with Dr. Pluhar this morning to discuss all of his follow up care.  We spoke with Rilley's veterinarian back home, Dr. Ewing, and she is willing to administer the bi-weekly vaccine shots once they start arriving in two weeks.

We are both ecstatic at how well Rilley is doing!

Thursday, November 4, 2010

Rilley's Evening Update

We received a call from Dr. Pluhar this evening with an updated on Rilley's recovery.  Apparently he is doing very well.  He's even been out for a short walk.  This is absolutely amazing!  To think that within the first day of having such major surgery to his brain he was up and about!  Obviously not with the same vigour as we have come to expect from him, but it is doubtful that a person would be out of bed and going for a walk the same day.  He is also already showing signs of being the same dog he was prior to today.  Apparently, when Dr. Pluhar got up to leave from a visit with him he started to whimper.  This left the medical staff wondering if he was in pain or just sad.  To check, Dr. Pluhar went to get him his stuffed Winnie (the Pooh) and once it was given to him, he settled down.

So as this evening draws to a close, it appears that today was a great success.  We have an appointment with Dr. Pluhar at the University tomorrow to discuss the results of his post-op MRI.

Rilley is in ICU

We just saw Rilley as he was being wheeled from the MRI over to intensive care. Aside from the stitches along the top of his head, he looks pretty good for someone that has had his head worked on! The word on the post operative MRI is that it was "fantastic". Until we get further details we can only assume that the surgeons were able to remove all of the tumour cells. (Or at the very least any that may be remaining are easily treated with the vaccines to come.) We will know more once we've had a chance to sit down and speak with Dr. Pluhar.
Rilley as he was wheeled from the post operative MRI and into the Intensive Care Unit. The intubation tube was removed immediately upon arrival in ICU. Notice his tongue sticking out, it is certainly bigger than you would think!

Surgery Update - Post Op

Dr. Pluhar just finished Rilley's surgery and stepped out to give us an update. She let us know that the surgery went really well, however it wasn't a simple as originally thought. Even though we've been calling Rilley's meningioma a "brain tumour", it technically is not.

It is a tumour of the brain lining called the meninges and a grade 1 meningioma simply pushes the brain tissue out of the way as it grows. Don't misunderstand, because the brain cavity is a sealed camber, any invading tissue will put increased pressure on the brain itself and as it grows larger it will begin to cause brain cells become damaged.

What was discovered during surgery today was that the meningioma was deeper into Rilley's brain had begun to attach itself brain to his brain cells. It is still classified as a meningioma, but will most likely be a grade 2 or 3 tumour and as the numbers suggest a more severe one at that. What this all means is that the surgical team could not simply go in and lift it out. They had to be careful to remove as much of the tumour cells as possible.

Rilley has now been taken to the MRI suite to have a scan in order to check if the surgeons were successful in removing all of his tumour cells. Fortunately, his specific tumour responds well to the contrast agent that they use and any remaining tumour cells will glow a bright white on the scan. If there is a small amount of remaining tumour cells, Dr. Pluhar is not concerned as the vaccine that Dr. Ohlfests team will produce enables Rilley's immune system to attack the remaining cells and kill them off.

We will get a chance to see Rilley as they wheel him from MRI to the Intensive Care Unit and the blog will be updated once we hear what the MRI shows.

Roy and Sara.

The Big Day has Finally Arrived

Morning has broken over Minneapolis, Minnesota.  With Rilley spending last night at the University, Dr. Pluhar had let us get an extra hour sleep and had us arrive around 8am. Upon arriving, she brought Rilley up front so that we could take him for his morning walk.  He seemed happy to get out of the veterinary hospital, so we took a few pictures with him before he gets his new hairdo...a shaved head.  (Poor little boy.)
Rilley out for his morning walk around the grounds of the University of Minnesota just before his surgery.
As we were walking back in, we noticed that he was moving slower.  Initially we assumed this was because he didn't really want to go back in, especially knowing what was to come.  Would you be in a hurry to have someone cut into your head????  However, Dr. Pluhar pointed out to us that he had been given Morphine and as the next half hour it really became evident!  Off to sleepyland for Rilley!

The Daily Planet crew arrived around the same time and started preparing themselves for their presence in the operating room.  Which also included getting into their scrubs!
Daily Planet Director of Photography, Jay Kemp posing in his scrubs.  We think he may be considering a career change based on the outfit alone! 
Around 9 am the anasethiologist came to take Rilley in order to prepare him for surgery. We said goodbye and now we wait....updates to follow.  (Luckily the University has public Wifi!)