The Cure for Cancer?

•May 29, 2012 • 6 Comments

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

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Does It Hurt?

•March 13, 2012 • 2 Comments

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….

•February 24, 2012 • 1 Comment

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

Fun, Fund, Fundraising….

•January 15, 2012 • 1 Comment

You know, the first english word in “fundraising” is “fun”… and I’m thinking that can be true.

My grandson is fundraising for his preschool class for an organization that supports  kids in Africa.  He and his mom went door-to-door soliciting donations for his dance-a-thon.  How could you refuse a precious little blue-eyed mop-top standing at your door, saying “I need a donation for the little boys in East Africa because they are hungry.”

After that first explosion of enthusiasm, he learned the more acceptable phrase “would you like to donate…”  but other cute things came out of this not-yet-four-year-old boy’s mouth … filling up his donor sheet.  Only one person he talked to did not donate.

I’m sure she must have been broke that day.

We as Tristan’s family, have undertaken a huge challenge.  We are trying to raise one hundred thousand dollars for Tristan to have the opportunity to try an alternate cancer treatment in the States.

And people have been wonderful.  To date we have raised over $30,000.00!  Wow!  Doesn’t that just blow you away?

It’s just that the remaining amount is more than twice that.

I know that if you are reading this you are interested in where we have been and where we are headed!  The fundraising began in earnest in October with the first campaign being “The Gift of Hope” email campaign.

While this was happening, family in Victoria was planning an open invitation evening at a local pub where people could come and have a burger and a beer for $20… with half of those proceeds going to Tristan’s Trust.  As well there would be a Silent Auction where people could bid on items and take something home if they were the lucky winner!

Then one of Tristan’s friends decided that she would use her photography skills and do a photo-shoot weekend with some of her photography school friends.  During the planning of this, two more of her friends decided that they would pledge all their tips from for a particular time at their restaurant workplace and give them to the Fund.

Once these were accomplished, the family was busy thinking different ideas…  a frozen food fundraiser, an ongoing bottle drive, a raffle for a tapestry, a bottle drive, selling t-shirts, a campaign aimed directly at business …  some ideas worked better than others and a couple were set aside for various reasons, and a couple are ongoing.

Friends who have a small business in Victoria set up a “collection” and then had a weekend where they gave a portion of their sales and matched it!

Then in Australia, where Tristan’s step-sister Genna lives, she and her band put on a concert  and another group put on an artistic evening with poetry reading and the like.

In Victoria, some dedicated neighbors have been quietly and purposefully donating all their bottle funds to  Tristan’s Trust Fund at Coast Capital Savings.  And a second grade classroom donated funds from the “left-over” dough of their annual Christmas cookie fundraiser.

In Vancouver a family gave to Tristan’s Trust Fund in lieu of giving one another  Christmas gifts.

Up-Island people held spa days and donated the proceeds… others collected funds and sent those along.

In Hungary, we sold Christmas cards, did an  Hungarian email campaign,  had a stamping party before Christmas.

And all around the world generous and caring people were just giving for the sake of helping a young man obtain his goal … and giving him the gift of hope.

From the start, his family has been writing letters, to all and sundry and getting little positive response, but they keep going. Check out the  blog article “Five Minutes of Fame” for more on this story!

We have a few new ideas on the front burners and will announce them as they come to reality, but think of us… pray for us or hold us in your hearts, as we are in the middle this enormous task.

Fun?  Well… it feels good to be able to do something for Tristan and Marion after they have had to be basically alone in the battle the last six years… But I wouldn’t use the word fun.  It’s hard work.  How do we say we need more people to give more than we have already received?  How do we say we can’t stop asking until we have this huge amount of money in the Trust Fund?  How do we impart a sense of urgency?

I’d like to have the candor of a 4 year old and say:

“I NEED A DONATION for my nephew in Victoria because he may not see many more birthdays otherwise …”

But it’s too hard.

Pail & shovel photo by Michelle Meiklejohn FDP

The Waiting Game

•January 8, 2012 • 2 Comments

Actually, waiting isn’t a game.  And it most often isn’t fun.  Personally I am terrible at waiting.  Waiting in line.  Waiting for a call.  Waiting for an email.  Waiting in traffic.  Just makes me anxious thinking about it… I’ve learned to chill to a certain extent but past my “magic marker” I get agitated, anxious, frustrated and even angry.

Today I read a poignant Caring Bridge post by a friend of mine going through the ravages of cancer. She talked of how life with cancer consists mostly of “waiting”. Waiting for the diagnosis, waiting for the surgery, waiting for the chemo to start, waiting for the chemo to end, and most of all waiting for the pain to dissipate, for energy to return and life to go back to normal.

Cancer consumes your life and the lives of those you love and leaves you all simply waiting for something to change.

Tristan also waits.  He’s been waiting for over 6 years now. He waited for a diagnosis and got it just in time for his 16th birthday.  He waited for surgery and waited for the results.  He waited for chemo and waited for it to be over. He waited to stop vomitting and waited to stop feeling like he’d been hit by a truck.  He waited for his hair to grow back and he waited to have energy to get through the day.  He put his teen life on “hold” as he waited for these all these things to pass and it seemed that his waiting was done.

But it wasn’t.  The cancer came back and he waited for more diagnoses, more treatment, more surgery, more pain, more vomitting, more limpid, vaccuous, energyless days.  Then more surgery, more treatment, more diagnoses and all the waiting that goes with it.

Now Tristan waits to “get on with his life” because the pain and the energy zaps rule like potentates… one day giving him freedom and the next day cutting him to the ground. Tristan waits to know if he can continue treatment in Edmonton. Waits to know if the cancer will become more aggressive. Waits as his family try to fundraise a mountain dollars to give him a chance to try a different therapy, a chance to hope, a chance to move past this interminable “waiting pattern” he’s been locked into. We know he can’t wait for much longer… he’s waited for so long….

We know once he tries the new therapy he will also be waiting to see if it’s successful.

I think we’d rather be in that last waiting room…

Photo by Tristan "Waiting for Spring"

Five Minutes of Fame?

•January 5, 2012 • 1 Comment

We have been working on this fundraising effort since the fall… all the family thinking of things and setting the wheels in motion.  We pushed hard into it in October, trying to solidify ideas and set goals.

We wrote copious fundraising letters to individuals; to television shows; and to corporations. We endeavored with little success to get the local  Victoria city paper behind Tristan, with none of the offices contacted even bothering a reply.  But eventually a friend “who knew someone at the paper” convinced  that someone to  write a piece about the  family fundraiser in Victoria… the Burger ‘n Beer Nite, as a community event announcement.  Alas, their reporting was less than exact and had to be re-written with corrections, including the date of the event… and it seems  Marion was told “Well, it  probably won’t effect too many people, it’s usually just friends and family that come out to these things anyway…” 

It wasn’t until a young man volunteered “he knew someone” he thought could help, that our efforts moved ahead with astonishing speed.  CTV sent a crew to interview Tristan and Marion at their home and Cheryl Bloxham was their voice on the evening news on Vancouver Island’s CTV newscast.

The evening this was shown on the news…  even the Taylors missed it.  It’s easy to do.  Supper time news, most people are eating supper.  Somehow the message about the time of airing was misunderstood and Marion’s sister in Budapest saw the Youtube version before Marion saw it!  Thankfully, CTV uploads its news pieces on YouTube and even family living abroad could see the newscast and then share it with friends.

We will share that with you now…  Just click on the link…it’s worth watching again even if you’ve seen it before.

http://www.youtube.com/watch?v=QI1UCTf8eVw

We pursued repeatedly, the city newspaper, realizing that our fundraising goals were so monumental, that we needed much more help than what we could muster among our circle of contacts.  We needed to mobilize a city.  But, the paper declined, citing “If we did it for one, we’d have to do it for everyone–therefore we will do it for no one”.  We were even told by  friends that we should “Face it, this isn’t news”.  Were they right?  Is a  young man fighting for his life and needing help not newsworthy enough anymore?

Had they not heard the story of the beach and the starfish?

The Starfish Story
Original Story by: Loren Eisley

One day a man was walking along the beach when he noticed
a boy picking something up and gently throwing it into the ocean.

Approaching the boy, he asked, “What are you doing?”

The youth replied, “Throwing starfish back into the ocean.
The surf is up and the tide is going out.  If I don’t throw them back, they’ll die.”

‘Son’,the man said, ‘don’t you realize there are miles and miles of beach and hundreds of starfish?
You can’t make a difference!’

After listening politely, the boy bent down, picked up another starfish,
and threw it back into the surf.  Then, smiling at the man, he said
‘I made a difference for that one.’

In December, after a classroom of second graders watched the CTV newscast about Tristan, they decided as a class that they would like to take the extra money they might make in their Christmas cookie sale and give it to Tristan.  Mrs. Duffus, their  teacher didn’t influence them to this decision, in spite of the fact that she is a friend of Tristan’s aunt… citing later that her students actually wanted to give Tristan ALL THE MONEY they would earn.  But basically “doubling” their work, they used their “left-over dough” to make cookies to sell to give to Tristan’s Trust Fund….  CTV was invited to join the class with Tristan and his mother Marion on the day the students would present to him their donation…

You can see how that turned out by clicking the link below this picture which was taken when Marion and Tristan went BACK to the classroom with their personal thank you to the selfless students!

Mrs. Duffus' 2nd Grade Class & Tristan

http://www.youtube.com/watch?v=nfQMA5rd25U.

Presently YouTube doesn’t seem to be updating the count or when the videos were uploaded…  those numbers haven’t changed for a month–but that’s irrelevant really.

What’s important is that you watch these and totally understand that this is a legitimate and important cause and  that you feel along with us, a sense of urgency in this fundraising process.  These little children felt it and acted on it.  We need all our readers to do that too!  …Because “every drop counts!”

starfish photo: winnond freedigitalphotos

Our Mission Statement as Tristan’s Family

•January 4, 2012 • 1 Comment

We know we cannot guarantee Tristan a cure, no matter what kind of therapy is available or where it is. What we CAN guarantee is that we  stand beside Tristan, support him, show our concern and care for him, let him know it matters to us whether he lives or dies, tell him by our words and actions we love him, and give him HOPE to keep fighting.

We have no wish to debate, degrade or deify current treatment or future treatment. We are grounded in reality and seek to give others the opportunity to stand with us in this fight for Tristan’s life and his hope for a future.

We consider each of you precious regardless of your decision to support Tristan financially and we try our best to acknowledge those who have shown their care in words, actions and gifts. We appreciate the prayers and good-wishes of those who know us and those who don’t. We are humbled by those who give sacrificially and  by those who are able to give out of abundance.  We know we cannot do this alone.

… Thank you for your part in Tristan’s HOPE.

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

 

Quote by R. Saturo

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