Aren’t You Angry?

I’ve been asked that question several times since the fall…  Since it was clear that the treatment from Burzynski wasn’t going as hoped…   Since Tristan wasn’t able to participate in the program he’d researched, but was directed to a much more potent, toxic treatment that was excrutiatingly expensive…  Since funds we thought would last a year, barely covered two full months of treatment and another month of clinic bills…with little to spare…  Since the next suggestion for treatment was to DOUBLE the existing protocol…  Since finally Tristan had to opt out of the Burzynski treatment…  Since it seemed our flicker of hope was about to be extinguished.

Angry?

We always acknowledged that we could not promise healing or demand a cure.  Our collective mission was to provide hope.  In order to do that, we also had to provide funds.  We took that task seriously, and together with an extraordinary and loving community around the world, we accomplished our goal.  We were able to provide funds for Tristan and Marion to have access to expertise that was not available in our own country.  They had the opportunity to explore the possibilities that existed outside our borders.  People, strangers, purveyors of hope, gave of themselves, their funds, their hearts; ministering angels rallied round the Taylors in the City of Houston, making them welcome. Each and every one of us affirming  that they were loved and cared for.

Angry?

Our goal for fundraising was realized.  We raised an incredible $100,000.00!!!!  We met amazing, generous, kind, warm-hearted people who gave sacrificially and who gave out of plenty.  Tristan and Marion were assured that they were not forsaken in their battle for Tristan’s health and life.

Angry?

Without a doubt there is a plethora of circumstance and painful experience to incense even the most phlegmatic of personalities, but that would be a poor use of emotional resources at this point.  I could write a book on issues along the way that have caused my sanctification to slip tremulously askew.  Some day I just might do that.  But for now, there’s no time for squandered emotion.

Personally, I choose to just breathe… in and out, in and out…. and thank God for family, for the time I had recently to spend with my precious nephew Tristan.  Time to talk, to share experiences, to probe that wonderful storehouse of knowledge that Tristan has garnered in all his studies, to listen, to love, to just be.    I will treasure our “Health Halloween”… the gathering and dividing of all the “freebies” given by a Victoria health convention, an experience that we all enjoyed so much we went back for a second batch the next day!  How homey our meandering through “Capital Iron” (they have EVERYTHING!)  and sitting in the camping section with Tristan and just talking…visiting at another sister’s house with three generations chatting, sharing, just enjoying each other’s company…. And how precious was the hug goodbye, as I left the Taylor home to eventually return the thousands of miles back to my own hearth in Hungary.

Trick or treat?

Angry?

I love my family passionately.  I am thankful to every one of you who have loved them too.  This journey is not over.  We still need you.  We need each other.  The time we have together is precious.  So often as we race through the days we forget that it’s time that can never be regained.  Better are those moments spent in love and caring than in bitterness and anger.

Marion with great neice Kat…

“Anger … it’s a paralyzing emotion … you can’t get anything done. People sort of think it’s an interesting, passionate, and igniting feeling —- I don’t think it’s any of that —- it’s helpless … it’s absence of control —- and I need all of my skills, all of the control, all of my powers … and anger doesn’t provide any of that —- …”       (Toni Morrison)

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.

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.

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.

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.

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.

You All Made a Miracle Happen!

ATTENTION:  AS OF JANUARY 2013 DONATIONS CAN ONLY BE GIVEN ONE WAY.             WE WISH TO THANK EVERY PERSON WHO GAVE TRISTAN THE GIFT OF HOPE.

We are no longer actively raising OR soliciting funds.  But those of you who would still like to help underwrite daily costs of supplements and special equipment, please feel free to send a cheque or money order to:

Marion Taylor

#23 – 700 Grenville Ave 

Victoria, BC Canada V9A 7J7

THE FOLLOWING WAS ORIGINALLY WRITTEN OCTOBER 30, 2012  THE ABOVE WAS UPDATED MARCH 14, 2013

It was brought to my attention that this information was not readily accessible on the blog…

We want to make it easy for miracles to happen, so here’s the information that you requested!

DONATIONS CAN BE GIVEN THREE WAYS:

Direct/personal deposit at Coast Capital Savings to the:
TRISTAN TAYLOR TRUST FUND

Cheque/money order to: TRISTAN TAYLOR TRUST FUND
#23 – 700 Grenville Ave.         Victoria, BC Canada V9A 7J7

Online with PAYPAL
go to the paypal “log in–send money–Canada–
friends and family– tristanscure@gmail.com    (ADD your particulars with the card of your choice)

Thank you to all those who wrote and asked for this information!  We appreciate it so much!!

“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

It’s a Miracle!

One of our friends on Facebook, shared this story with us, with a wish for Tristan to experience the same.

It was about a lady who needed a medical procedure not available in the States and was raising funds to go abroad. (hmm, sounds familiar!)

It seems it was her good fortune to randomly meet someone in the parking lot who had the means and the heart to share in her need.  The stranger gave a cheque for $500 to this woman to help out.  Wow!  A complete stranger just handed her a cheque for five hundred bucks!!  But the story didn’t stop there.  Later he decided to come back and  promised to write another cheque for her.  This time he wrote out a personal cheque in the amount of $20,000.  It was enough for her to start her treatment, to pay for the trip and the accomodation… she’s now free to explore her options and maybe save her life.  What a blessing!!  But it only happens in the papers, right?

Our Tristan Taylor Gift of Hope goal:

ONE HUNDRED THOUSAND DOLLARS.

After fundraising for almost 4 months, the graph below announced our progress for all to see.

Sure it looked pretty intimidating, but we were up to the challenge.  We had no other option!

On a graph of this magnitude, it wasn’t very encouraging by March 1st.

After we had worked for 7 months raising funds,  it seemed like our resevoir of hope was drying up before we reached halfway.

Then, out of the blue, a person contacts a radio personality in Victoria and says they’ve heard about Tristan’s situation and would like to anonymously donate $20,000.  That was like a catalyst of hope.  A perfect stranger had dug deeper than any of us could imagine and blessed us with a gift of twenty thousand dollars!!  This was encouraging, not only to us, but to all our supporters.

Slowly our trust fund total  managed to scale the wall of challenge, with our famous “sliding graph” recording the changes … and by July we only had just over another $12,000 to raise.  But we were almost out of events, and we were definitely out of steam.

In July  a wonderful musical event had been planned, which ended up threatened with inclement weather.  Only the hardiest of souls braved the chill wind and ominous promise of rain.

We felt as if hope was standing still…

For me, it was the first ever event that I was able to attend because I live out of country.  I was nervous as we drove to the small town of Mission.  It was the most gorgeous park venue, and we could see emptiness both in the parking lot and on the park greens.

I stopped with my four year-old grandson outside the park gates and said “Griffen, we need to ask God for a miracle.”  Then together we put our heads down and asked God “to please hold off the rain until 6 o’clock.”

All afternoon we watched the grey, murky sky.  At 5:50 we were wrapping up the last of the prize give-aways and at two minutes before six the skies began to spit tiny, insignificant raindrops.  By 6:05 the rain was pelting down, but the event was finished and people happily helped each other pack up technical equipment, chairs, musical instruments, cameras and computers, jewellery, paints and papers and no one even really tried dodging the rain… we were all just smiling and laughing — and very soggy, as we left the parking lot.

On our way out to the concert we thought if we raised $600 on this day it would be a miracle.  We raised over twice that!

But we still had over $10,000 left to raise.  It would take months and copious events, even at this rate!

And then again, out of left field, another benefactor offered $10,000 to go toward The Gift of Hope for Tristan.  They wanted to remain anonymous to the world at large. Together with a some smaller fundraisers, we were finally there.

July 18 we made the  public announcement.

We had raised $100,000 for the treatment.

Our collective hearts wanted Tristan on that plane immediately…  but unknown to all of us, time had taken it’s toll on Tristan’s body, and there was more hand-to-hand combat he had to engage in against his arch-enemy, cancer.

What most people don’t realize, is that the clinic he’s going to is an “out-patient” clinic.  He MUST be ambulatory and his immune system needs to be fairly strong to withstand the rigors of travel and daily trips to and from the clinic for tests.

Our next miracle came silently.  Tristan was still in Canada when he needed drastic, immediate care.  Had he been in the States when this happened, it is not inconceivable that every penny we had raised for the specialized treatment would have been needed  for emergency care.  And we would be back at square one.

When finally Tristan and Marion DO make this first trip, it will probably cost in the neighborhood of $4,000 for direct flights and all the other costs it will take to remain in Houston for up to three weeks.  After this point they may be returning every 6 weeks for a few days for the remainder of the treatment…  So now we know  it is wise if we raise a bit more for transportation and accomodation, because with those kinds of costs, it will make things excrutiatingly tight for the Taylors.

Are we worried?  Have we already had our “share” of miracles?  We certainly have.  And we are so thankful for every one of them.

And we appreciate the many OTHER miracles, not written down here.  And for the miracles that consisted of  gifts of $5 or $500; spare change and generous helpers; birthday gift money or cookie sales; silent auctions and hot dog sales; card making and card sales; car washes and bottle drives; concerts and burger nites; for the people who gave openly and those who gave anonymously; for those who gave out of plenty and those who gave sacrifically… because every one of these miracles have come from the heart… isn’t that a miracle in itself?

A hundred thousand miracles…

Thank God He doesn’t keep count.

Go for the Gold!

With the eyes of the world feasting most recently upon the Olympics, it reminded me how we human beings revere strength, endurance and tenacity.

We also adore winning.

“No one remembers second place”.

Truly, I wonder if we honestly remember first place, after all the hooplah dies down.

Ok. Here’s a test.  Who won the 1972 Men’s Discus Throw?  No googling it!!!

I need a name NOW.

Who cares you ask?

My point exactly.

But we just spent two corporate weeks around the world, proving we DO care.  Enjoying the best of the best in sports worldwide.

Just for fun, I looked up heroic failures.  You should try it some time… there’s an extensive list.  Some will make you laugh.  Others will make you roll your eyes.  I honed my search to “Olympic heroic failures”… and found this tidbit on a site from the country of Wales:

ABDUL BASER WASIQI
Another noble marathon loser, the Afghan athlete found organisers had started clearing the track for the closing ceremony when he finally reached the Atlanta stadium in 1996.

http://www.walesonline.co.uk/sports/london-olympics-2012/olympic-news/2012/06/28/olympic-heroic-failures-91466-31282505/

Can you imagine that?  You’ve slogged your guts out on a race that you started with a myriad of other runners, only to finally finish the course and find no one in the stadium.  No one waited for you.  You knew you weren’t going to win gold, but seriously—-coming in to find the finish line has been packed up for another four years and the clean-team changing the venue for the celebration party??!! Talk about being old news… they forgot his name before the race was done. Was it worth it?

Maybe it’s time for us to shift our view on what exactly a WINNER is.

Time to go back to the values we say we admire… strength, endurance and tenacity.  While the world hails the winning athlete and our nations bask in their glory, what about all the people around the globe competing every moment of every day for their very existence?  Those people like Tristan, cancer warriors, who wake up every day and have to choose how they will endure another day of pain, choose how hard they will fight and how long they will battle.

There’s no “nice” way to handle cancer.  It’s an all-out-no-holds-barred-assault and every day is a war and every new day after that is a victory.  There are no gold medals, no silver or bronze rewards for these quiet heroes who undergo surgeries, blood tests, spinal taps, chemotherapy, medical trials, radiation, and lives in chaos, simply to have a chance to live another day.

You survive or you don’t.

It’s not quite the “Hunger Games” kind of existence, but then again… in some ways, cancer has become the Capital of Panem, forcing its Tributes to go up against extensively-trained and well-armed rivals.  The rest of us are forced to the sidelines, to wait, to watch and to feel powerless to change their destiny.

We can’t call it anything but a battle, because to not recognize it as such means that we are not prepared for the full destructive power that is inherent in this enemy.

Part of it’s insidious power is that as on-lookers, we do feel helpless to make a difference.  But we can.  People have proven that over and over.  We have the power as a group of people to rise up and be victorious, by cheering for the team, by seeing a need and supplying it, by praying however we believe, and by sharing our respect for the warrior.

We want to thank all those who’ve joined us in support to give Tristan a fighting chance.  Because of hundreds of people giving hope sacrificially or giving out of abundance, giving a little or giving much, Tristan now has the financial wherewithal to try something new, something different, something cutting-edge.  A new weapon in the arsenal against an aggressive and merciless enemy.

When I look at my nephew and my sister and see what they have accomplished in seven years of unrelenting battle, I believe that they deserve a stadium full of the world’s audience, standing in awe and ovation for them.  Raising a flag, singing their anthem and rejoicing in a fierce competition that has enduring, life-altering results.  I believe that Tristan and Marion deserve a hundred bouquets for their strength and tenacity, a thousand Kodak moments for their endurance, and  gold medallions hung around their necks, signifying that we recognize them as the ultimate in competitors.  They deserve newscasts and news articles and people to remember them 25 years from now.

All they want is for Tristan to have a chance to live his life, healthy and whole.

By the way, the winner for the Discus throw in ’72 was Ludvík Daněk of then, Czechoslovakia.

The Final Wave of Hope….

Without having heard this quote before today, this is just exactly what we have done.  We started simply by standing beside a young man with inoperable cancer.  It was necessary… to give him a chance to hope for a future.  It was out of love and concern and a desire to help in some small way.  We knew that we had to support Tristan; to support his family; because they had already weathered a 6 year battle with cancer.

Alone.

And now hope was growing dim.  The reality was there wasn’t really much anyone else could  DO through those years, except pray or wish them well and maybe be a listening ear.

Then came our opportunity to actually DO something.  We could rally a group of caring people to help put together finances to allow Tristan to try an alternate cancer treatment that he’d researched, but which was far out of his family’s financial capability to give to him.  The treatment was his “possible”.  It was also our “possible”.  We could rise to the challenge!

Our IMPOSSIBLE was the overwhelming sum; a $100,000.00 price tag put arbitrarily on someone’s life, which seemed paltry when considered in that light, but none-the-less, far beyond our reach.

Soon the IMPOSSIBLE was being met head-on in a battle for Tristan’s well-being and with the desire to uplift this young man and give him eyes that could seriously look at a future.  We didn’t sit by in sackcloth and ashes and expect the money to come rolling in, but rather, overturned every stone and worked through multitudes of ideas, plans and events.

Exhaustion would best describe the phase we are in now, but TENACITY runs strong in our family and we are not about to give up when we are so close to our goal.  We will knock on every door, ring every bell and call from the mountain tops to get this message out there!

WE ARE ALMOST FINISHED! We have raised almost $87,000.00 as of July 1st.   With just a little push more, we can be finished the concerts, the hot dog sales, the garage sales and even the  precious grass-roots movements!  If everyone would take THIS project and pass it along with their own vote of confidence and  support… not only once or twice, but until we have reached our goal, then we can say:

WELL DONE YA’LL …

and have Tristan on that plane to Texas, secure in the knowledge that he can finish what he starts and that there will be an army of people praying and wishing him well in the next phase of this life journey.

Please click on the link below to the Indiegogo Project–already at $1,090 as of July 1st, 2012 with only 15 funders—there’s plenty of room for you to join us financially, remembering that ‘EVERY DROP COUNTS!”–and together we could make a miracle happen with this FINAL WAVE!

“GIFT of HOPE–THE FINAL WAVE”

The Cure for Cancer?

It’s been seven years since someone’s world was irrevocably changed.

Tristan is not the first person to ever have neuroblastoma.

He will not be the last.

He is, however, unique.  One in five million at time of diagnosis to have this form of cancer.

Tristan’s teen years were turned upside down.

His parents’ world was turned upside down.

His little brother’s life was turned upside down.

And  through the first six years, everyone fought to find out how to gimbal life… trying to keep their balance when the world tossed them mercilessly on the sea of treacherous, cancerous unknown.

In those seven years, many treatments have been suggested, many have been tried and have had some level of success and some level of failure.

Tristan remains unique, and the odds of him surviving seven years have made that original equation unestimable.

Tristan is  family.

To me, he is precious.

His case is personal.

Tristan has done much study into his own situation.  He has learned about cancer.  He has learned about options.  He has learned about holistic treatments and ideas and about a cancer clinic in Texas.  His family wanted to give him the opportunity to try the alternate treatment he had researched.

But it cost money.

A lot of money.  

$100,000 was mind-boggling.

This past year, finally, there was something the rest of us could do.  We could help make an option for treatment a reality.

Our family rallied together.

Our friends rallied together.

Strangers rallied together.

And we are almost at our goal.

It’s been eight months since we started our fundraising in earnest.

In  those eight months we have raised almost $75,000 for Tristan to have the option to see what the possibilities are for a specialized alternate treatment.

During the first course of the fundraising, in the fall,  a harsh and experimental treatment in Edmonton was suggested and tried, in the hope that the radioactivity poured into his body would shrink the tumors.  It did actually show some positive results.  There were high hopes.

Then it was decided that the treatments couldn’t continue because of the severe negative side effects.   Those side effects would be as deadly as the cancer. It was finished.

This wasn’t the first treatment that had limited success. But it was to be the last official treatment.  At that point in time, the medical community was out of ideas.

Now we are anticipating with joy and hopeful hearts that Tristan will soon get to explore this new alternative protocol.  But have we set our expectations too high?

Like any of the myriad of treatments, surgeries and pills before….

THERE ARE NO GUARANTEES

Tristan knows this.

His mother knows this.

His family knows this.

Tristan has diligently sought to make a difference in his own life.  He has a regime and a lifeplan that would amaze you.  He’s wise beyond his years.  Never one to want to be in the limelight, this whole fundraising effort has taxed his quiet and private personality.  We have stretched him, but in the process, given him many things…

We’ve given him… HOPE.

We’ve given him …LOVE.

We’ve given him …FUNDS.

We’ve given him … OPPORTUNITY.

BUT A CURE is not ours to give.

We cannot buy it.

We cannot demand it.

It is ours simply to hope for,

and if we so believe, to pray for.

“To dream is to hope.  To hope is to live”

(R. Evans)

                                                                                                                                                                                   ….I’m praying for you Tristan… Aunti M

Does It Hurt?

Have you ever thought about the crazy things we say when we are nervous, or don’t know what we should say?  For instance, what do we say when someone hurts themselves, when someone ends up in hospital, when someone dies… we don’t always have ready words, but we can’t abide the silence –so we fill it with something–often something trivial.

And sometimes we KNOW we’ve done this,

and other times we are totally oblivious.

Today I watched a video done by a breast cancer survivor.  I’m going to post it here for you to watch.   Yes.  On a site for a guy with cancer.  We’re in this to learn together, right?

The title is taken from a popular you-tube phenomenom… but in spite of this rather colorful and attention-grabbing banner, there’s no profanity except for the “B” word,  so it’s suitable for all to watch.  It’s not so much about breast cancer as it is showing how our attempts to be affirming or comforting, often miss the mark!  And THAT is an issue in many areas of life…. regardless of gender!

*****

Tristan Taylor was diagnosed with neuroblastoma, a rare diagnosis of an infant/early childhood cancer, just before his 16th birthday.

Tristan has been through it all since the start of this 7 year battle with neuroblastoma.  He’s had chemo, radiation, multiple surgeries, painful tests, and had radioactive isotopes pumped into his body.  He’s had nausea, fatigue,  spent hours throwing up or trying not to… he’s had to travel back and forth on the ferry or on airplanes after treatments, when all he wanted to do was curl up in his bed and be alone… he’s lost his hair, lost his eyelashes, lost weight, and slowly regained these things…. but the thing he’s never lost is his desire to be victorious over cancer.

And to Tristan, part of that victory has been to shun the role of “sick kid”... he hasn’t allowed self-pity to overtake his life, he has been determined to do what he could for himself and not have cancer be his introduction to a room.  So he walks in.  Tall, strong, handsome, and he’ll meet your gaze straight on.

Does he LOOK like he’s got inoperable tumors penetrating his spine, threatening to paralyze him–as this enemy multiplies in a deadly effort to take his life?

NO.

Tristan has worked HARD to find holistic alternatives to strengthen himself.  His diet consists of radically healthy whole foods and supplements.  He works out to improve his energy level, to keep his fitness as a priority– and he’s the one who gets his “healthy” friends motivated to keep going to the gym at unearthly hours of the morning.  So, no, you don’t SEE him as a guy with cancer.  You don’t see him as a guy who is fighting for his life. 

But he is.

And he’s fighting hard to maintain a balance in his life over a treacherous, insidious chasm.  He’s like a man on a tightrope.  Skilled, determined, focused, and visualizing his goal.  Not acknowledging the yawning, grasping ravine stretching under him…

Does it hurt?

Tristan doesn’t want pity.  He doesn’t want to play the “sympathy card” and allow himself to wallow in all the murmured condolences and stuttered solaces… He wants to move forward, have a plan and plan a future.

If he knows you, and he trusts you, maybe you can ask him…

“Does it hurt?”

And he will tell you.

“Yes. It hurts.”

But still, he is in control, and with that control comes freedom.

Although he may not be able to ultimately control the cancer,

Tristan knows he can control his reaction to the cancer

and by doing this, he really IS controlling his enemy,

his enemy is NOT controlling him.

MENTAL MATH….

What’s happening in the world of raising funds for Tristan’s cancer care? Besides being blown away by people’s incredible generosity, humbled by their sacrificial giving, and amazed by their creativity, I find myself doing much too much mental math.

My mind can’t get over the idea that a great number of people, giving a small amount of money, could be the solution to this overwhelming issue of having to raise an OUTLANDISH total in order that Tristan, a cancer warrior, might have the wherewithal to try a new, less toxic cancer treatment in the States. This amount is outlandish only because in Canada, we are not used to paying FULLY for healthcare.

I say fully, because it’s not until you have a serious health crisis, that you find out the things that our system DOESN’T cover. But that’s for another article. What we are discussing NOW are  feelings; specifically my mental state as we reach toward our goal of raising $100,000.00.  We are trusting this eye-popping amount will cover at least a year of cancer treatment at the Houston Burzynski Clinic for Tristan Taylor, who is heading into his seventh year battling neuroblastoma.

Cancer.  Deadly, unrelenting, iniquitous cancer.

We can’t buy a cure, but we won’t sit idly by without exhausting our possibilities for hope. I look at it this way. If it were MY son and all that stood between him and a hope for a future was $100,000… then I would find a way to get that money.

Well, it’s not my son, it’s my sister’s son… and all that stands between him and a hope for a future is $100,000… and we WILL find a way.

Breaking it down into simple math is what I find myself constantly doing.

Watching the Super Bowl I asked my husband…

“How many people are there?”

He answers.

“How much did each person pay for a ticket to get in to see the game?”

Another answer.

Wow.

We spend a LOT of money to entertain ourselves.

Then I start doing the math.

What if every person there gave only $1 out-of-pocket?

But it wouldn’t happen.

But it COULD happen…couldn’t it?

I live in Hungary, and after 10 years we finally decided to get satellite TV. So, now we also have access to North American shows… some good, some as old as ten years (hey they’re new to us!!) and some that leave a whole lot to be desired.

Take the show “Outrageous Kid’s Parties”.  I don’t know when it was originally aired.  Along with the reality wave, obviously.  Never having seen it, I watched.

It chronicles extravagant, narcissistic, self-serving parents trying to splash-out on celebrations ostensibly for their kids. I sat, horrified, as a family spent something in the neighborhood of thirty thousand dollars for a pre-school birthday party. I can’t even remember the age of the child, but he was too little to  remember it well, if at all, without self-glorifying parental input!

I also don’t recall the final tally of all the bills, for pirates, a tall ship and fencing lessons, among other things–I was in SHOCK. What I DO remember is being appalled, surprisingly angry and moved to frustrated tears as I thought about the futility of that kind of cash outlay. Money so lavishly wasted on one DAY, on a memory eventually abandoned by a little boy for the next overindulgent experience… A total expenditure which represented an immense portion of what is needed  for treatment that could SAVE a young man’s LIFE.…

Mental math.

It can be hazardous to your mental health.

Photo: Victor Habbick FreeDigital Photos