Kent Pankow Trust Fund

May Update:
Greetings All,

We hope this email finds you well. The past two weeks have been extremely hectic, trying to sort out a new treatment strategy for Kent. Doctors at the Mayo reviewed Kent's MRI and they felt that surgery and the measles virus might not be that helpful, given the location of the cancer. They also worried that the procedure might make things worse, so they recommended chemo as the best course of action.

We ruled out vaccine trials in the US for now because you have to stay off chemo for a month before enrolling, and Kent doesn't want to risk the cancer growing during that period.

So on April 22nd, Kent started taking a daily high dose of Tamoxifen chemo, which he will take for six weeks. On May 5th, he also started taking Decadron, a steroid to help reduce any swelling in the brain. Tamoxifen and Decadron are covered by Alberta Health.

Kent will have an MRI on June 8th to see how the Tamoxifen is working, and we will get the results on June 10th. If it's not working, he will switch to a daily low dose of Temadol chemo which will cost about $3,500 per month, based on his body weight. Kent has taken Temadol before and he's had his best success with it so far, among all the chemo's he's taken. Temadol is covered by Alberta Health if you take it 5 days on and 28 days off, but it's not covered if you take a daily low dose. So if Kent goes on it again, it won't be covered by Alberta Health. Don't get me started on this...

All of the doctors we consulted with at the Mayo, the Tom Baker and the Cross, seem to agree that the Tamoxifen has a "reasonable chance of working" since it is from a chemo drug family that Kent has never taken before. Kent's childhood friend, Al Gibbs, the drug designer for Johnson & Johnson in Philadelphia, also gave Tamoxifen the green light - and Kent always checks with Al before he takes a new chemo. So we feel pretty confident that we have the best strategy possible at this moment in time.

Many thanks to Jacqui Poissant, Al Gibbs and Jack Hurford for all their help with research, as well as the numerous emails and late night phone calls to analyze the information. We would have been lost without you guys...

Kent is as determined as ever and he wants to go ahead with the R4K Rally for Kent on May 29th. It's something that he's really looking forward to, and this would also help position him for the daily Temadol treatment payments, if and when the time comes. If you haven't already marked the day off in your calendar - please do - as this will be a great opportunity for you to hang with Kent and meet many of the other amazing people in our lives.

German Cancer Research Centre: Parvovirus Clinical Trial for GBM Brain Tumours

We are interested in enrolling Kent in the following clinical trial, which will likely be occurring near the end of 2010. The good thing about the trial is that it can be non-invasive, as the Parvovirus can be injected directly into the blood stream and still cross the blood brain barrier. We have requested the criteria for admittance into the trial, and will let you know if Kent is accepted.

Here is a link to the German Cancer Research Centre's Media Release:
Viruses Against Cancer: Complete Regression of Malignant Brain Tumors After Treatment with Parvoviruses
http://www.dkfz.de/en/presse/pressemitteilungen/2010/dkfz_pm_10_21_Viruses_Against_Cancer.php

The following article is from Science Daily:

Viruses effective against brain cancer in animals: Human trials set to start (May 5, 2010) -- Advanced gliomas were shown to regress completely in rats after treatment with parvoviruses, and the animals survived significantly longer than untreated animals. Parvoviruses do not cause any disease symptoms in humans and the rats treated did not show any undesired side effects, either. A clinical phase I trial on parvovirus treatment of patients with advanced glioblastoma is about to begin. ... > full story

Human Rights Complaint
We hope to have new information for you in our next update.
As stated in previous updates, the Alberta Human Rights Commission has informed us that we have grounds for our complaint against Alberta Health and Wellness, regarding discrimination in Avastin billing. Kent was charged $4,555.00 for 11 Avastin treatments between November 6, 2009 and April 7, 2010, whereas other cancer patients received the drug free of charge because they have other forms of cancer.

Alberta Health and Wellness was originally supposed to provide a response to our complaint by mid-April, but they asked for an extension. The Alberta Human Rights commission granted Alberta health an extension and they were now required to provide their response by May 7, 2010. Our hope is that we will be reimbursed for the 11 Avastin treatments and we can put those funds toward an alternative treatment for Kent.

Ritu Khullar, a human rights lawyer with Chivers Carpenter Law, has agreed to provide us with a pro bono review of our case and recommendations for next steps, after we receive a response from Alberta Health and Wellness regarding our complaint. Many thanks to Ritu for her kindness in this regard. We are indebted, to say the least.

Letters to MLA's Regarding Approval of Avastin for GBM Brain Tumours
An MLA office representative asked us to ensure that folks include their mailing address if they send an email/letter to their MLA and would like a written response, regarding the approval of Avastin as a GBM brain tumour treatment.

FUNDRAISING EVENTS

R4K Rally for Kent - Ramada Hotel - Edmonton - Saturday, May 29, 2010
Ramada Hotel and Esmeralda's: 11834 Kingsway Avenue NW, Edmonton

PLEASE NOTE THE DATE CHANGE to May 29th (not May 15th)
All motorcyclists are invited to participate in the ride, and everyone is invited to participate in this family friendly event from Noon to 7PM.

Highlights include:

Please see the attached poster, invitation and sponsorship package for more details...
Invitation
Sponsor Package
R4K

Call for Musicians
If you would like to perform at the R4K Rally for Kent on Saturday, May 29, 2010 please email chris@chriswynters.com and Chris Wynters will try to include you in the line up.

Here is the list of participating musicians so far:

Call for Volunteers
If you would like to get involved with organizing or volunteering for the R4K Rally for Kent, please email team.kent@hotmail.com and we'll find something exciting for you to do!

Call for Sponsors
If you would like to become a sponsor of the R4K Rally for Kent, please see the attached sponsorship package.

Call for Silent Auction Items
If you have items to donate to the R4K Silent Auction, please email Tracy Kardash at
tracy.kardash@elizabethan.com and she will be happy to assist you.

Call to Media
We are looking for members of the media to cover the R4K Rally for Kent. Please email Deb Hurford at team.kent@hotmail.com if you are able to attend the event.

Call to Government Officials
We would like to invite government officials to attend the R4K Rally for Kent. Please email Deb Hurford at team.kent@hotmail.com if you are able to attend.

Update: Music and Justice for Kent Pankow Now Worldwide
Lorelei Loveridge has been collecting 100 CD's from UK/Irish recording artists, and she and Jodi Seven and Bill Marples of the band Quiet Evolution have also been collecting 100 CD's from Canadian recording artists, to ship to Kent as two Music Packages to auction/raffle off, with the proceeds going to his medical fund.

Lorelei advises that they have opened the UK/Irish and Canadian Artists CD Raffles to world-wide artists, and they now have 160 artists worldwide pledging music so far. Lorelei writes:

We have actually combined the UK and Canada music campaign into a worldwide campaign and international artists are now joining from all over the world, from Germany to the US to two countries in Africa, to - of course - all across Canada and the UK - there are a lot of people pulling for you.

How you find the energy to carry forward some days... I do hope you're taking good care to feel the spring sunshine on your faces. I wish I could be AT the biker rally. That's a painful one - not to be able to participate as a musician. But have a bloody splendid time. - Lorelei

Here is the list of artists participating in this world-wide fundraiser to date. Please check these artists out and support them if you can:

Canadian Artists:

UK/Irish Artists:

Other International Artists (US and beyond):

Nothing short of AMAZING!! And it brings me to tears...

If you are on Facebook, you really should check Lorelei's site out as there are some amazing comments from artists from all over the world:
http://www.facebook.com/event.php?eid=106938976003947&ref=mf

Beer and Pizza Fundraiser - Ongoing
To date, the Beer and Pizza Fundraiser has generated $ 5,910.72. Thanks to EVERYONE who is participating in this unique fundraiser, and to Jon, Mary and Zan for making it happen.

Jon & Mary Wright, and Zan Van Brunschot have been encouraging folks to give up a Beer and Pizza Night once a month, to donate the money to Kent's medical fund.

If you haven't heard about this unique fundraiser and you want to participate, please email Mary Wright at mary.wright@littlewireless.com for more details. Information about the Beer and Pizza Fundraiser is also posted on the Team-kent-Pankow Facebook page.

Volya Baziuk's Donation Box - Ongoing in Edmonton
Massage therapist, Volya Baziuk, has developed an information sheet/poster about Kent and she has placed it on her reception desk with a donation box at Alberta Momentum Massage Therapy Clinic in Edmonton: 8602 - 99 Street. To date, this initiative has raised $120.00. Many thanks to Volya and her clients for this wonderful gesture of kindness.

Josh and Ryan's Bottle Drive - Ongoing in Olds
To date, the Bottle Drive has raised over $700 for Kent's medical fund. Props to Ryan and Josh for their leadership on this fundraiser!

Ryan and Josh James-Wright of Olds are holding a bottle drive to help raise money for Kent's medical fund, as follows:

Kent Pankow grew up here in Olds
HE NEEDS OUR HELP. He is fighting cancer; his medicine costs LOTS OF MONEY!!! Save your cans and bottles and put them towards his treatment. HELP US HELP DEB AND KENT!!! For bottle pick up or to get involved... Call RYAN AND JOSH at 403-559-8099.

Jaeme Redgwell's Photography Fundraiser - Until May 31, 2010 in Olds
Jaeme Redgwell of Redgwell Photography in Olds, Alberta is donating $500 to Kent's medical fund from each wedding session booked with her from now until the end of May, 2010. She will also donate 20% of her photography sessions during this time period. Please use the code words "Team Kent Pankow" when you book your photography session with Jaeme. She has some amazing photos on her Redgwell Photography Facebook Page, so check them out if you are on Facebook. Many thanks to Jaeme for her kindness and generosity - it is much appreciated!!

To everyone who is involved with the fundraisers and Wild TV's Trust Fund, we can't thank you enough for your kindness and your contributions!

Kudos - Comic Relief for Kent
We would like to send out a huge thank you to all the volunteers and sponsors who made Comic Relief for Kent such a huge success:

You are all Angels...

Kudos
Many thanks to the following individuals and agencies for their help with the R4K:

Facebook Update
If you are on Facebook, please sign up to Team-kent-Pankow to show your support - and invite your Facebook friends to join, as well. The more support the better! Over 1,000 people have joined so far and have access to our updates, media coverage, photos and comments from other people who visit the page.

Love, Hope and Laughter
Here are a few examples of the beautiful messages from recording artists all over the world, who are sending music and healing vibes to Kent:

Jon Hogan
Kent,
All of us in the Jon Hogan Band are honored to participate in this campaign to assist you through this difficult time... We sincerely hope that our donation towards the cause of our latest album "Every Now and Then: Songs of Townes Van Zandt & Blaze Foley" will reach your ears soon, and it is our further hope that it will be enjoyed by you and all of the team. It�s the least we can do � we hope to do more if we can. We�re pulling for you here in the States! Much love, Jon Hogan

Steven Michael Curvin
Best wishes and many prayers from From Mars to Memphis...I will do what I can and lovingly spread the word!!!!

Jay Stansfield
In the way of the ancients I would like this message to be passed on to Kent: "Imagine, with all your heart, you are well. Imagine the healing has already taken place. Imagine, with the greatest gift you are blessed with, that you are the healthiest you have ever been and your body will do the rest." ? Infinite Love and Gratitude to you Kent xxxxx

Oona McOuat
Kent and Deb - Admiring your incredible strength and courage and sending you love and miracles from Salt Spring Island.

Lani Ford
Hi Kent, I really admire your courage. I have sent 2 CD's from STARK. Glad we can be involved. Wishing you strength, Lani Ford

Lisa Rigby
Hi Kent, I've passed my band Townhouse's CD "Ten Pieces" on to Lorelei when she was in Edinburgh. I hope you get the cash you need pal, sounds like you're surrounded by a lot of people who love you very much. Lisa Rigby, Edinburgh

Final Thoughts
I'm thinking about living in the moment. We all know we should be doing it, but how many of us actually are? One of the first things that initially drew me to Kent was that he vibrated on a different level than most people. He was in the moment. He had already faced one round with cancer and he had made peace with himself. He was calm. And alive. And I love that about him. He continues to teach me that every day is worth fighting for, and I am learning to make every day count.

Thank you for walking beside us... Deb (and Kent) XOXO

"It is wrong to think that love comes from long companionship and persevering courtship. Love is the offspring of spiritual affinity and unless that affinity is created in a moment, it will not be created for years or even generations." Khalil Gibran