Sunday, August 14, 2011

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:

Wednesday, August 10, 2011

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!

Thursday, August 4, 2011

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.