Hope comes at a high price for Hintenberger family

Jonathan Hintenberger faces his fifth leukemia diagnosis without any funds from the government

By Amanda Street
Port Colborne

For most people, hearing the words "there's nothing we can do" from a doctor would be the end of the road. But for Jonathan Hintenberger and his family, it's a reason to keep on fighting.
Jonathan was 19 when he was first diagnosed with Leukemia. The dreaded cancer has returned four times since then. Most recently doctors diagnosed the disease in his blood and doctors say they can longer do anything for him. They will continue chemotherapy until the leukemia wins.

"What I don't want to know is how long do I have to live," Jonathan said. "I just take each day as it comes."

"The doctors just dropped their heads and said 'I'm sorry there's no longer anything we can do,'" said Jonathan's sister Jennifer. "They can't give him high doses of chemo or bone marrow transplants. They said they can give him small doses of chemo to deal with the pain until the leukemia wins."

After coming home from the hospital in February the family fell into a state of depression. But after discussions about alternative therapy the family found renewed hope.

Jonathan is receiving naturopathic treatment from a St. Catharines doctor in conjunction with his chemotherapy.

Jennifer had sought the help of a naturopathic doctor a few years ago when she fell ill. In her heart she knew the treatment would work for Jonathan, the only problem is the costs.

In July 2007 Jonathan married his sweetheart Alicia, six weeks after being diagnosed with leukemia for a third time. Not only was the diagnosis a blow but once he tied the knot his health coverage dropped.

Ontario Works stopped paying for his medication stating that Alicia's $21,000 income as a shoe store manager was "too much for the program."

In 2007 Jonathan's medical costs were $11,000.

Last month his medical costs were $1,600. While the naturopathic treatment is helping Jonathan feel better, it's quite costly.

"It's been amazing for our hope and Jon's mentality," Jennifer said. "We never tried it until this time. I think it took the doctors saying 'we can't do anything else' to get us to go this way."

"I feel a lot better than I did," Jonathan said. "I'm not as sore. Before after chemo I could barely walk. I have renewed hope, I can feel it working."

All medical expenses, except for hospital treatments, are covered out of Jonathan and Alicia's pocket. Jonathan hasn't been able to work since last February so the couple is living off Alicia's $21,000 income and support from family and friends.

Jennifer and Jonathan have been feeding donation bottles for different charities all their lives. One night Jennifer had the idea to set up a bottle campaign for Jonathan. About 50 bottles have been distributed across Niagara. A photo of Jonathan and Alicia on their wedding day is taped underneath a poem he wrote the first time he was diagnosed in 2003. On the other side is a time line of Jonathan's five-year battle with cancer.

So far support has been overwhelming, said Jennifer. Friends and strangers alike are pouring donations and support to the family. A website, www.savingjonathanhintenberger.blogspot.com, has been set up to update supporters on Jonathan's journey. A wrestling match has been organized for April 26 at Welland's Club Social in support of the cause. Jonathan's wife Alicia will even participate in the wrestling match. Tickets to the event are $15 at the door and $5 for children under 12. Doors open at 6 p.m.

They are also working on a stag and doe like fundraiser for the summer months to pay for medical costs and in vitro fertilization.

Before Jonathan underwent chemotherapy he has his sperm frozen so he and Alicia could one day start a family. The treatment is costly, between $7,000 and $10,000 and is not covered by health insurance.

Businesses interested in displaying the donation bottles can call Jennifer at 905-834-2166.

A donation account has been set up at Meridian Credit Union account number 6844781. Donations can also be made through the website.

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

CHANCES ARE...
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.

This is a poem my younger brother, Jonathan, wrote five years ago when he was first diagnosed with Leukemia at the age of 19.

After writing this poem and experiencing everything involved with a fatal cancer, Jonathan chose to "look ahead and see a new life cast"

His journey:

October 2003: diagnosed- endured 1& 1/2 years of chemotherapy

June 2005: leukemia returns-endures chemotherapy as an inpatient for 2 months

September 2005: high doses of chemo and full body radiation, and a stem cell transplant.

July 2007: marries his beautiful wife and angel on earth Alicia Ciccone.

February 2008: leukemia is now found in his blood.His doctors say they can no longer do anything for him. They plan to continue chemotherapy until his body can no longer handle the effects.

Cancer patients often die from the side effects of chemotherapy rather than from the cancer itself. We have had the opportunity to meet with two sensational Natureopathic doctors that have given Jon hope. These doctors have the ability to use natural methods to manage and inhibit the negative effects of chemotherapy. This treatment will improve both the quality and quantity of his life. Unfortunately this treatment is incredibly expensive.

Jon has overcome many so-called 'impossible' battles to come face-to-face with one more. No matter how much adversity we face as human beings and how many times we are reminded about 'statistics', there is still some amazing unexplainable feeling within us that says we can beat these odds if we take the right steps.

Please be apart of our journey to continue to achieve the 'impossible'.

"Most of the important things in the world have been accomplished by people who keep on trying when there seemed to be no hope at all."

Donations can be made to: 20 Oak St Port Colborne, ON L3K 4S5 OR Click on the donate button below

If anyone has any questions, please feel free to call Alicia and/or Jennifer Hintenberger personally at (905) 834-2166 and we will answer your questions as soon as possible.

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