Dying to Know

A year.

A year of waiting.

Praying.

Hoping.

Hardest of all is the waiting.  I blogged about it earlier… I called one of our very first stories,The Waiting Game”you can read it by going to the January 2012 Archive to the right and clicking on it.  There truly is nothing remotely fun about cancer’s little game of “Wait and See”.

Now, after all that waiting, we have come full circle and are waiting again.  Only this time the stakes are higher.  This time hope is less palpable and we feel as if we’ve run from the monster only to be toppled into the ravine of political wrangling, corporate profit and medicinal pride.

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In October of this year (2012), with the help and blessing of thousands literally around the world, Tristan finally was able to go to the clinic he’d studied and researched.  A place that was doing something different.  A place that was having some great successes.  A place we all hoped would have some answers.

But a year of waiting cost Tristan dearly.  In that time, the cancer progressed and Tristan literally fell under the wheels, just as the goal of $100,000.00 for treatment was reached.  We weren’t even sure he’d get to give it a shot.  However, with heroic fortitude, Tristan beat the monster back and made that epic journey to Texas.

Houston angels from a local church and a private help organization met them there and served and cared for the Taylors as they investigated this long awaited opportunity.   At the Burzynski Clinic, the Taylors were introduced to Tristan’s own team of medical professionals. Tristan even got to meet Dr. Burzynski himself.

Tristan and his mom Marion, spent only a portion of the three weeks we’d thought they’d have to stay first time around.  That was mostly due to the fact that the treatment he was to receive was not the usual Burzynski protocol.  It was felt his cancer was too advanced and Tristan’s hopeful less-toxic researched therapy too slow.  The Clinic put together a pharma-cocktail-trio to knock the multiple tumors into submission.

Tristan at Burzynski Clinic Oct. 2012

Only problem with that was the long list of dubious side-effects.

In spite of this, the doctors remained adamant.

Drugs once again.

Potent.

Powerful.

Aggressive.

Nasty.

And expensive.

Insanely expensive.

Orphan drugs are something I learned about years and years ago on an old TV show called “Quincy”.  I never forgot the issue.  And over thirty years later, the issue hasn’t changed.  If there’s not enough people who need a particular drug, the pharmaceutical companies don’t want to produce it.  They don’t have “backers” and there’s no opportunity for them to make the big bucks.  There is legislation in place all over the world, to make sure that there are some sort of incentives, as well as requirements, for drug companies to make sure drugs that will serve only a minority population are actually researched, tested and brought to market.  But, who ends up paying for all that research?  The person with the rare need for that particular pharmaceutical protocol.

Tristan's Burzynski Protocol for now

None of us want to believe that medicine is mostly about making money.  But sadly it is.  Forbes, the money magazine,  wrote an article entitled “Orphan Drugs: ‘Rare’ Opportunities To Make Money”, and I will leave it to you to check out this link and be educated.   http://www.forbes.com/sites/edsilverman/2012/08/23/orphan-drugs-rare-opportunities-to-make-money/

That’s why Tristan is paying $500 a pill.  That’s why with three drugs, the cost is horrendous.  Twenty thousand dollars a month.  Say it out loud.  Then do the math.  Ten months of drug protocol could buy a house.  A nice one too, depending on what part of the country you live in.

With that kind of expense, the money we thought would last through a year’s worth of treatment will evaporate with one more month of protocol.  There will be no more money for drugs.  There will be no money left to pay the doctors at the Burzynski Clinic.  Our $100,000 will have lasted three months.

Since October we’ve had questions hovering overhead which still have no answers.

Tristan will go for a CT scan on December 13.  We’re counting on that to provide some direction.

Have the drugs had any signficant effect on the tumors? 

Is it worth Tristan plowing through the life-threatening side-effects to continue this relentless attack on his adversary?

These are not the only uncertainties the Taylors are facing….

On Monday, December 3rd, I shared this on Tristan Taylor Fundraising Page on Facebook:

After we find out if the Burzynski medication is working we must have two more questions answered:

1. Will the Canada Special Access Program back the Burzynski protocol, covering all, or a substantial part of the $20,000 per month?

2. Will Tristan’s body accept being back on the drugs, or will the side-effects disallow his participation in the protocol ?

HUGE.
INSANE.
CANCER.
"Cancer Cell" by jscreationzs
And, still we’ve not exhausted the unanswered questions:
  • Would it be more useful to use that last amount of money and purchase supplements that enhance the quality of Tristan’s life?
  • Will we even have a choice?
  • If we can continue with the pharmaceutical trio, how do we actually access the drugs?
  • Are the drugs simply out of reach?
  • Where do we get the money to pay for them?
  • Are we “fall-out” in the war against cancer and the big business that surrounds it?
  • Are we stuck in no-man’s-land because we crossed the border for help that our own country was unable to provide?
  • Will the drugs simply not be available because although the pharmaceuticals exist within our own borders “Canada doesn’t treat that particular cancer, that particular way” and therefore we are not entitled to these powerful and specialized prescription drugs?
  • How is it that the above statement can be presented as fact, since Tristan was one in 5 million with this type of cancer at time of diagnosis, and the field  has only expanded exponentially as he’s a survivor of 7 harrowing years?
  • Is there truth in all the insidious undercurrents of thought and accusation about finding a “cure” for cancer?

Right now we don’t have any of the answers to these life-altering inquiries.

BUT TRISTAN IS DYING TO KNOW.

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~ by tristansgiftofhope on December 4, 2012.

One Response to “Dying to Know”

  1. Praying for you 12/13 …you are courageous! Fun to think Michelle and I met at a Scottish church in Budapest because of loving Scottish dancingl

    God bless your “understanding” of all your body is ‘doing’ with med. help. Maureen

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