“I Don’t Know What I Expected, But This Wasn’t It”

I’m tired.  I’m emotionally drained and frazzled and I’m not even the mom.  I don’t live in Victoria… nor do I live in Canada for that matter.  I am removed from the daily interactions and realities of what cancer does to a family’s life.

How much more must the fatigue factor be for my sister Marion, wondering  each and every waking hour, what is ahead in her fight for her son’s life?  What does she feel when she tumbles out of bed to a Victoria sunrise, her son in an fitful sleep in a room down the hall,  knowing  she must somehow mobilize the insane funds necessary to give Tristan a chance to live his life??  When each moment of every day  she must consider how to find the wherewithal to purchase life-changing pharmaceuticals which are costing them over $20,000 per month??!!

Tristan’s Burzynski Protocol for now

The Taylor’s Journey of Hope started over a year ago.  We started fundraising last September 2011 to give Tristan a chance to go to the Burzynski Clinic in Houston, Texas.  They were doing some unique and non-aggressive treatments for cancer with great success.  It piqued Tristan’s interest and hope.  As his extended family, we wanted to give him the opportunity to keep hoping in the face of great adversity. By the grace of God, in the middle of July 2012 we managed to meet our goal of $100,000.  It took almost a whole year, but we did it.

And then all hell broke loose.  Tristan’s CT scan showed more tumor growth.  It showed spots where spots ought not to be.  It rocked our world.  It took the wind out of our sails.  And it pounded the bejeebers out of Tristan. His body was thrown to the excrutiating ravages of  tumors; growing, pushing, penetrating.  We feared he might not be able to make the trip to the clinic at all.

But Tristan is a fighter, a true warrior.  There’s no other word for this tenacious young man who has had to plow through life by sheer grit, as one thing after another has been thrown his way… not just this summer, but for the last seven years of battling neuroblastoma.  All those years of endured suffering put him in good stead and he persevered through weeks of horrendous and debilitating pain, more radiation, nausea and mind-numbing exhaustion; the inability at times to move a single muscle or even an eyelid; then had to face repeated radiation to fix an “over-radiation”, experiencing prolific vomitting and fatigue, and worst of all, feeling hope slipping through his fingers like grains of sand.  In true fashion, with what we have all come to expect, Tristan eventually rallied and was able to make the arduous journey to Texas, in October of this year.

Tristan bolted down for system-specific radiation

As a very important aside: we know had he been in the States when this happened, all our funds would have been sucked into the vortex of hospital bills, and our fundraising would have been in vain. We would have spent money on an emergency and had nothing left for long-term treatment.  So we are thankful for the mercy of this set-back happening in Canada, and not in Texas.  A small mercy with a grand outcome.  We had the money to continue our journey of hope for the coming year.

Or so we thought.  At this moment, doing the math, we are looking at approximately two to three months of treatment, both clinicial and pharmaceutical, totally depleting our funds.

Once again we have had to spring into action and sort out how to come up with the resources to make Tristan’s Gift of Hope happen.  We have started by asking the pharma companies for compassionate rates.  To date we have not heard from any of the three, although we have had some amazing “contacts” sent our way and this is still a possibility.  (NOTE: THIS IS NO LONGER A POSSIBILITY.  THE ANSWER WAS “NO”.)

Even accepting this drug protocol was not an easy decision for Tristan.  This was not the kind of treatment he had been banking on.  But he was told his tumors were too aggressive and he didn’t have “the time” for the less invasive treatment at the moment.  A trio of serious drugs were his only option.  One of the medications cost $500 per pill.  And it had dreadful side-effects. He wanted to opt out, but was told the three drugs needed to work in unison… one or two without the others would be a waste of time and effort.   The night before they flew home from Texas, Tristan, wretching violently, threw up one of these pills, leaving behind an extremely costly pile of vomit.  “Treatment” is not simply popping a pill and all is well… we sometimes forget this in our lack of truly understanding the realities of those with cancer.

Marion & Tristan at Burzynski Clinic

We have of course solicited help from the Burzynski Clinic with the costs of drugs, but not being US Citizens, there doesn’t seem much recourse for any sort of help.

We have gone to the Canadian oncologist and asked that she get “on board” with the Burzynski treatment and have the directives coming from her… thus allowing this treatment to fall under BC Medical or  be covered by  The Canadian Cancer Society.  That’s not going places at this time.  Doctors have their hands tied by rules and regulations.  Insurance doesn’t cover you when you go outside your borders for help.  Even when your own country has nothing left to offer.

We are presently trying to solicit help from organizations or individuals who have the potential to do mighty things, who would perhaps be willing to help by underwriting some or all of the monthly costs …. but many of these organizations specialize and we don’t fit the criteria.

Marion has gone to her MLA, who at the time of this writing, has not responded.           (NOTE:  They are unable to help and they “regret that we have not been able to find any direct resolution to this matter.” )

We have gone to the TV station who has suggested that a report “wait until there’s something to inspire others”… an interview date will be discussed after the first week of November.  (NOTE: As of Nov. 29 this still hasn’t happened)

We are back in the “fund-raising saddle” with little experience  and numbers bigger and more outrageous than ever.

We thought our fundraising was done.  That now was the time to concentrate on healing.  But here we are, once again.

We have been told kindly that we have “saturated” the small-fundraising field, and we know, whether this is right or wrong, we don’t have the time to do bottle drives and hot dog sales for another year.

Tristan is running out of time.  He doesn’t have another year for us to puddle along …

A young man’s life is at stake.

Tristan at the Burzynski Clinic October 2012

But the sad reality is cancer is not news.  People die from cancer every day.  We have become, in many ways, immune to the horrors of this malicious disease.

However, our reality is Tristan is precious to us.  His life is worthy of effort.  His life is worth being lived.

Our original premise still holds true.  A little given by a lot, could wipe out the financial need.

We have one last option for continued hope:  Tristan’s Greater Vancouver Island Community understanding that their communal input could change the life of one young person.  If the television report could generate the kind of community spirit and care that we know exists…  we could find ourselves once again covered by grace, showered by love and blessed by the Gift of Hope.

“Individually we are a drop.  TOGETHER WE ARE AN OCEAN”  R  Saturo

~ by tristansgiftofhope on October 29, 2012.

3 Responses to ““I Don’t Know What I Expected, But This Wasn’t It””

  1. I love you all!!!! Still playing the lottery for him…. God – we need those numbers!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  2. Such an amazing family you have Tristan!!And your Mom…..well, she is really so much more than words could say!!!!!hugs and prayers

  3. Hello everyone… I’ve updated some of the information since the time of the original writing one month ago today. Sadly, there’s nothing exciting to share… we are looking for a miracle… but miracles happen every day, right!?

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