Posts Tagged ‘LiveStrong’

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Gold at the End of the Rainbow

May 23, 2012

Wow!  How could I let a whole year go by without updating this blog?  Well, one of the reasons was that I didn’t correctly post the update I did write in the Fall of 2011.  Yikes!  After 7 years of learning to make use of the latest computer technology, I am still stumbling.  Oh, well! Not to worry.

The important news is that I had a terrific year from March 2011 to May 2012, in terms of meeting my goal of fulfilling my daughter Sara’s dream to “make a difference” in the world of young adult cancer advocacy.  All the events mentioned in the last blog – APOS, CAPO, and the “Wrong Way To Hope” cross-Canada Tour – were a huge success. I got to reconnect with old friends and make some new ones!  It is especially gratifying to meet new young adult survivors and their caregivers.  To these people, our advocacy awareness campaign matters.  That makes the traveling worthwhile.

After the successful completion of the WW2H Tour, I arranged to fly down to San Diego, California to present my One Stop Shop: Multimedia Resources for Young Adults With Cancer Poster at the National Coalition of Oncology Nurse Navigators Conference. The theme was “Changing the Face of Cancer Care”. NCONN president and co-founder Sharon Francz and her amazing assistants kept the whole conference going in spite of a 12 hour blackout!  As we found our way up and down the stairs (no elevators available!) by the light of candles and glowsticks, I “hugged” up with my old pal,  Jonny Imerman (Imerman’s Angels) and met some new members of the young adult cancer community: Ariana Vargas from www.GiveForward.com; Matt Ferstler, testicular survivor and Founder of Single Jingles; Diptesh Patel, Chief Executive of ZarpZ; and Amanda Hitt, who was representing mASSkickers.  Great fun!  I love the energy of all these incredibly talented young adults who are so passionate about speaking up on behalf of all young adults with cancer.

November found me in Austin, Texas at the LiveStrong Young Adult Alliance Conference, presenting the One Stop Shop: Multimedia Resources poster again (for which I was thrilled to win the LSYAA Poster Award), and also co-presenting a session with Mike Lang on The Emergence of Adolescent and Young Adult With Cancer in Film – Past, Present and Future, to over 300 young adult survivors and organizations at a Plenary Breakfast Session. Mike introduced his new film: Ebb and Flow, and I was able to feature clips from both Chasing Rainbows (with new Spanish subtitles!) and Sara’s Story, Sara’s original documentary from 1998. This turned into an opportunity to close a chapter on the work I have been doing on behalf of Sara for the past 12 years, acknowledging the passing of the torch to the many new filmmakers advocating for young adults with cancer: Mike Lang, our special guest Andrew Jenks from MTV’s “The World of Jenks” and many others.

Recently I was also grateful and honoured to receive an Outstanding Leadership Award from the Global Women’s Summit, for my work on Sara’s behalf. It does feel like something is coming to an end; closure finally achieved, perhaps.

The bottom line: when Sara and I started advocating/facilitating for young adults with cancer 14 years ago, the voices from this community were only whispers. Now, they are at a ROAR.  Sara’s work is done!  And thus, my work as a young adult cancer advocate is transforming.  I think it is time for me to shift my focus, towards the parents of young adults who live and (sometimes) die from cancer. This is another “gap” in the general awareness of the young adult cancer experience that needs to be filled…what is a parent to do?

I wrote my own very personal answer to that question for the Cancer Knowledge Network blog: “To Live or Die or Advocate, A Mother’s Choice”.  You can read it here: http://multimed.current-oncology.com/patients/to-live-or-die-or-advocate-a-mothers-choice/. You can also find another part of that story in Anne Grinyer’s latest book: Palliative and end of life care for children and young people: home, hospice and hospital, in which she has quoted an interview I did with her about the end of Sara’s life when I attended the Teenage Cancer Trust Conference in London, England two years ago.

My need to explore this new direction was reinforced when I attended the OMG Summit in Las Vegas in April 2012.  Matthew Zachary hosted a session panel including four parents of young adults living with cancer. During the proceedings, a young survivor stood up and expressed a huge concern for her mother, if she was to actually die from her cancer.  From the audience I spoke up, sharing Sara’s story with everyone in an effort to show this young woman that even though Sara died, I was still standing 12 years later. I also mentioned that I had recently spoken to Janie Brown of the Callanish Society about holding a one-day retreat in September 2012 for parents who are facing this kind of loss.  After the OMG session many of the parents who were in attendance came up to me to say they would love to have the support of such a retreat.

Again, at CAPO (Canadian Association of Psychosocial Oncologist)’s annual conference in April 2012, when Mike Lang, researcher Liane Kandler and I presented a 90 minute workshop called Reel Stories, Real Wisdom: The Use of Film as a Tool, Treatment, Recovery and Education for Young Adults With Cancer, the need for support for the parents of young adults with cancer came up.  It seems to me that this next step  is really calling me by name, and I need to pay attention to the calling and see where it takes me.

So, you see, there is a pot of gold at the end of the rainbow.  I need to explore this new found treasure further.  I know Sara would think that it would make for a successful transformation.  It also allows me to stay connected and supportive to the young adult cancer community…which I love so much!

I will keep you posted.

– Pat

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Chasing Rainbows and Wrong Way To Hope National Tour 2011

March 8, 2011

Biggest New News!  Young adult cancer survivor, Mike Lang, asked me to help him “do for his film, “Wrong Way To Hope” what I have been doing for “Chasing Rainbows” for the past 4 years.   Within the past few months we have built a WW2H Screening and Discussion Cross Canada Tour for March 20 to May 19th, 2011, from Victoria, B.C. to Halifax, N.S.     We are launching the tour with YACN and Callanish Society who are hosting a WW2H Screening event as a fundraiser at the Ridge Theatre in Vancouver, B.C. on March 20.   Sponsors are being finalized as I write this:  YACC and First Descents have shown interest.  Mike Lang is keen to empower the voice of young adult cancer survivors everywhere.  A blend of Canadian and USA Retreat programs would be huge!  Go Mikey Go!   Fraserway RV has offered an RV for Mike and his wife and business partner, Bonnie to drive across the nation.  Check in at: www.wrongwaytohope.com to find out when we will be coming to your town or city!

I am excited about broadening my young adult cancer awareness campaign in the months to come.   With the help of www.owlydesign watch for my new branding campaign:  Chasing Rainbows Young Adult Cancer Advocacy.

I  have developed a “One Stop Shop: Mulitmedia Support Resources for Young Adults Living With Cancer” presentation which I presented at APOS (American Psychosocial  Oncology Society) Conference in Anaheim, California in Feb 2011.  It has been accepted by CAPO, Canadian Association of Psychosocial Oncologists,  for their Conference in May 2011.  Plus, Mike Lang and I will be presenting a screening of “Wrong Way To Hope” at CAPO as well.   Yahoooo!

Since my last  summer blog post:   I traveled down to Austin Texas in November 2010 for the Livestrong Young Adult Alliance Conference to present “Chasing Rainbows-Young Adults Living With Cancer” in Spanish subtitles!  Great response from the Latino community!  Well worth the effort and expense.   I also took one of  www.jimmyteens.tv Flip cams to interview some of the young adult cancer survivors attending the conference.  I met lots of new folks:  Jeanette Ferguson from Joan’s Fund, (Head and Neck Oncology Research), Peter Laneas, spokesperson for The Canadian Testicular Cancer Association, Jeni Garner from www.Lovehopestrength.com and Debra Macki from www.YellowUmbrella.org .  Ethon Zohn was a keynote speaker…got a pic with him!  He is a terrific speaker with a big heart!

Of course I hooked up and partied with old pals like Jonny Imerman from Imerman’s angels, Lorna Larsen from Team Shan, Matthew Zachary from I[2]y and Eric Galvez from MASS Kickers…plus many more familiar faces, far too many to mention.  Livestrong YAA is such a great way to meet all the young adults working together to strengthen the voice for the young adult survivor.  I feel honoured to be part of this circle of energy!

Sara..you continue to be my inspiration.  You, like Geoff Eaton at YACC and Matthew Zachary at i[2]y, are one of the pioneers for the young adult cancer awareness voice that has definitely grown in size and magnitude since you were first diagnosed with cancer in Oct 1997.  All three of you should be so proud!  You wanted to make a difference and you have!  Love you…miss you!  Mom.

To be continued….

Love, Pat, the Mom.

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Meeting The Goals Set By Sara

August 30, 2010

Greetings Blog Readers…so happy you found us.  Here is the latest bits of news Ihave to share.

Before my daughter, Sara, died from cancer at age 26 she asked me to distribute our documentary, Chasing Rainbows-Young Adults Living With Cancer, throughout British Columbia, across Canada, the USA and, Mom, if you have time, Europe.  That was in the Spring of 2000.  Here it is 2010 and I am so pleased to announce that I am getting to the place where I can say…”Sara, I have met those goals.”    By attending the IPOS/CAPO Conference in Quebec City, Canada and the Teenage Cancer Trust and Young Adult Conference in London, England in June of this year, I have now not only provided this valuable resource in English, but also in French, to willing psychosocial oncologists from Canada, Australia, France, England, Scotland, Romania, Italy and Sweden.

At IPOS/CAPO in Quebec City, a wonderful young adult cancer survivor, Karin DuBois, spoke in french at the Premier French Screening for Chasing Rainbows.  Also, Dr. Martine Hoffman, from Luxemburg  joined us.  They both speak french fluently.  I proudly introduced the film in my limited french.  I was glad for their fluency during the Q and A part of the presentation.

In Quebec I met Katie Rzvi who runs www.thelittlepeople.ro in Romania.  Check it out!  Also, at the TCT Conference, I met Natalya Jagger, who runs www.btbuddies.org.uk for brain tumour survivors.

At the TCT Conference, I also met with Mark Wilkinson from www.jimmyteenstv.com who has created an amazing website for teens and young adults touched by cancer.  He has agreed to upload the “Chasing Rainbows” DVD in its 43 minute format as well Chapter increments onto the site.  We hope to have the upload completed by September 2010.  It will mean young adults, their families, friends and the medical professionals who care for them can access the whole film on the internet.  Wow!  That will definitely fullfill Sara’s distribution dream for the film for Europe…and around the world.  I will keep you posted.

I met, Myrna Whiteson, the founder of the TCT at the Conference. www.teenagecancertrust.org TCT is putting teenage/young adult Units into hospitals throughout the UK.   These Units are amazing!  A floor or ward dedicated to teens and young adults only…their own entertainment room with videos, films and a pool table, plus a food kiosk that offers choices other than regular hospital food.  The staff is trained on how to communicate and care for these young people and their specific needs.  I hope this Unit idea can come to Canada sooner than later.

I also got to meet at the TCT Conference, the author of “Cancer in Young Adults Through Parents’ Eyes”,  Anne Grinyer.  I highly recommend her book.  It is terrific resource for young adult cancer awareness.

What is next for me?  Getting “Chasing Rainbows” translated into Spanish, Italian, Romanian, German,  Hindi, Malay, Mandarin, Cantonese, etc. is the goal I am continuing to work on.   I will be attending the LiveStrong Young Adult Alliance Conference in Austin, Texas on Nov 3-5th  again this Fall.  To have the film translated in Spanish by then would be fantastic!   I love this conference…run by so many young adult cancer survivors…who also love to go dancing into the wee hours at the fabulous music clubs in Austin.

So, my dear daughter, Sara…I know you are smiling.  Other young adults living with cancer are being seen heard more than the were in 1997 when you were first diagnosed.  Your dream for making young adults with cancer feel less isolated and alone is coming true!  Way to go!   I will continue to do what needs to be done!  Love, Mom.

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Photo Post: Chasing Rainbows House Concerts in Vancouver & Whistler

May 19, 2010
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Photo Post: Livestrong Young Adult Alliance Conference 2009 in Austin

November 26, 2009
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Ottawa, Hamilton, Ontario and Austin, Texas

November 24, 2009

Wow Blog Readers:

I Chased Rainbows out to Ottawa, Ontario Sept 23 for the Go Public, Control Cancer Global Leadershop Conference where I found out that getting “Chasing Rainbows” transcribed into as many Global languages possible is one of my new goals.  The French Versioning is now finished.  Hindi, Spanish, Arabic, Malay, Italian are the next to come.  It is already in Dutch subtitles.  So much more to do!

Three more Screenings in Hamilton, Ontario came next on Sept 29 at the Juravinski Cancer Centre and at the Movie Palace Theatre, hosted by Wellwood in celebration of their new Women’s Young Adult Support group!  I met some wonderful new young adult cancer survivors who joined me at our presentations as quest speakers!  I love that part!

Next, I flew down to Austin, Texas for the LiveStrong Young Adult Alliance Conference for Nov 11-13th.  Fun! Fun! Fun!   Tons more of young adult survivors, great networking opportunity with USA young adult groups and Australia.  Met Drew from “BlameDrew’s Cancer”,  and Adam Garone, founder of Movember and Jack Bouffard from the Stupid Cancer Show.  Matthew Zachary was there, too.  Lorna of Team Shan, and  Pam of Ali’s Journey and Bill from Testicular Cancer Canada were the other Canadian’s there.  Energy, ideas and inspiration!  Great trip!

CAPO is next in May 2010.   Bottom Line:  Still much to do to support the young adult voice for cancer.  I am so grateful I can still continue to make Sara’s dream come true!   Love her, miss her, wish she was here!  I will keep Chasing Rainbows until the work is done!   Bye for now!  Happy Holidays and Happy New Year!   Pat