Renewed hope has high price tag

Jennifer Hintenberger, her brother Jon Hintenberger and his wife Alicia Hintenberger stand behind donation bottles that have been distributed throughout Niagara to raise money for Jon's leukemia treatment.

STAFF PHOTO/Kaesha Forand
Renewed hope has high price tag
Posted By KAESHA FORAND

His wedding day was one of the happiest days of his life.

When Jon Hintenberger married his girlfriend Alicia Ciccone July 7, 2007 he had been diagnosed with leukemia for the third time six weeks earlier.

Wedding pictures on their TV stand show a happy couple in love.

Jon had no idea marrying his sweetheart would prove to be so expensive.

She makes about $21,000 a year as a manager at a shoe store, but according to Ontario Works she earns too much for the program to cover Jon's medical bills which top $11,000 annually.

So after the wedding, Ontario Works stopped paying for Jon's medication.

The young couple are now forced to live off Alicia's income and support from their family and friends.

It's no easy task since Jon is in the hospital up to three days a week - often for chemotherapy treatments that leave him weak and ill for up to four days.

All he wants is to go back to work but can't do so at this point after being diagnosed with acute lymphocytic leukemia for the fourth time.

Jon was 19 when he was first diagnosed with leukemia in October, 2003 after graduating from high school and beginning his auto service technician apprenticeship.

He endured 18 months of chemotherapy, underwent numerous lumbar punctures and even suffered a collapsed lung while receiving a pic line.

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He suffered a dramatic 30-pound weight loss over a three-month period, had dark circles under his eyes and couldn't feel the difference between cold water and scalding water - something doctors still can't explain to this day.

His numerous chemotherapy treatments have resulted in full hair loss four times, mouth sores, high fevers, nausea and loss of appetite. At six-foot-one, Jon's weight plummeted to an unimaginable 125 pounds.

Doctors haven't determined the cause of the leukemia, although possible heavy metal exposure during his apprenticeship as a mechanic could be a cause

Jon said every time he is diagnosed he wonders "how long before it comes back?"

"They gave Jon bad odds in the first place and he's beaten the odds a number of times," his sister Jennifer Hintenberger said.

After his second diagnosis in September 2005, he received a bone marrow transplant from Jennifer which lasted a year. The third diagnosis came six weeks before his wedding in July 2007 and the last diagnosis came in February 2008.

"Doctors say his organs aren't strong enough to do a second bone marrow treatment," Alicia said, adding doctors are now saying they will administer chemotherapy until his body can no longer take it, something she said hasn't been giving them much hope.

With that in mind Jon began seeing a naturopathic doctor from NaturoMedic in St. Catharines. They have heard numerous success stories from other naturopathic patients which has given the Hintenbergers renewed hope.

Jon is receiving an intravenous vitamin C treatment in conjunction with other natural treatments to strengthen his liver and kidneys which are the most damaged organs and play a key role in detoxification.

"We're hearing lots of positive stories," he said. "This has given me new hope. Something has to work and this will."

NaturoMedic provides the structure for healing by optimizing patient health and treating diseases.

The treatments have helped ease Jon's bone and hip pain and cleared his infections. It also inhibits the negative effect of chemotherapy.

That renewed hope comes with another high price tag.

It costs about $1,500 a month for two weekly naturopathic treatments. These costs are in addition to his three weekly hospital visits.

To help ease the financial burden Jon and Alicia are facing, Jennifer took a break from her university studies in Australia to be with Jon until he recovers.

She made donation bottles and began distributing them to business across the region last month.

The bottles outline a timeline of Jon's struggles and information about his treatments. The bottle also has a poem he wrote when he was first diagnosed.

"They're putting a price on life. Jon didn't want to put something to an end because of the price," Jennifer said.

Forty to 50 bottles can be found in Port Colborne at businesses such as Food Basics, Boggio Pharmacy, the Market Cafe, Stewart's, Erie Muffler and Brake and Super Mario's Pizzeria.

In Welland, they are at the Dollarama, Dairy Maid and Perk Up in the Welland General Hospital. Some bottles are also in St. Catharines and Dunnville.

"The bottles have been generating so much support and feedback and have raised a couple hundred dollars," she said.

All the money raised through bottle donations will be put towards his treatment and medication. A wrestling fundraiser will also be held at Club Social April 26 at 8 p.m. in Jon's honour.

They also plan on holding a stag and doe in the summer to help pay for treatment and in vitro fertilization.

Before Jon underwent chemotherapy, his sperm was frozen for the day he and Alicia want to start a family. However, the in vitro treatments cost $7,000 to $10,000 and is also not covered by an insurance plan.

Jon said he hasn't asked doctors how long he has to live and doesn't plan on doing so.

"I've never asked. I don't want to know because if you find that out that's how long you will live," he said. "I'm taking life day by day and am still planning for the future. I have to."

Business owners who wish to display a bottle can contact Jennifer at 905-834-2166.

Donations can also be made at the Meridian Credit Union to account No. 6844781.

kforand@wellandtribune.ca

Chances are ...

This is the poem Jon wrote the first time he was diagnosed. It graces each donation bottle.

Lying here in this hospital bed, all I can do is shake my head.

To ask, to know, to wonder why, should I stay, or say goodbye.

The doctors say chances are great, but still, I lie here and debate. To look ahead a new life cast, or look behind and see the past.

To look ahead, or to look back, no matter what there's always tracks.

To pick the right and not the wrong, or dare I try another song.

But lying here in this hospital bed, things went better I'm getting ahead.

To see the sun up in the sky, now I look up and know why.

The words of others dearly said, we're sometimes words, I'd thought I'd dread.

But listen to what the doctors say, you'll feel better, you're on your way.

~ Jonathan Hintenberger