recipes for feeding the toddling masses...creating and posting happy and pleasurable eats for the mamas and the papas, the babies and everyone in between.

Wednesday, January 16, 2008

cancer is the enemy..

one year ago this past christmas our dear friend tony carbone had a massive tumor growing in his brain that nearly killed him. this battle has been constant with the worst was diagnosed just recently. unfortunately for tony and his wife sinnamon they were denied use of a preventitive medicine all thanks to those lousy insurance companies we know to hate.

on feb 2. there will be a benefit concert to help fund the costs of tony's meds. below i have copy and pasted the information on this event as well as a recent interview that they made to the press telegram. there is a myspace page dedicated to this benefit as well as an address for doantions.

his fight has been hard and sad...we continue to think the best for them every morning, every night and every day. this benefit is an example of the love that surrounds them and the kind of warm and awesome people they are.

the title will take you directly to the myspace page dedicated to the tony carbone benefit show.
http://www.myspace.com/topdogmax

HERE IS AN LITTLE BIT OF INFO FROM MYSPACE:
Two years ago, Tony Carbone was diagnosed with Stage IV melanoma — the most aggressive and life threatening form of skin cancer — which spread to his brain.

But the 34-year-old elementary school teacher for the Long Beach United School District is an amazing fighter. Since Tony’s initial diagnosis, the cancer has spread to his brain four different times. Because of the resulting brain tumors, Tony has paralysis in his left leg and has lost vision in his right eye. He has undergone six brain surgeries, whole-brain radiation and chemotherapy. This past Christmas he almost died, but eventually pulled through.

All of this has been a tremendous financial strain on Tony and his wife, Sinnamon. Tony’s response to treatment thus far has been successful and his doctors are recommending a drug called Avastin to supplement his intensive therapy.

Research indicates that Avastin is very successful in treating melanoma. However, his insurance company, Blue Shield, has denied coverage for the drug, calling it “experimental”.

Tony and Sinnamon appealed this decision by sending literature about the use of Avastin with melanoma patients and records from five other major insurance companies that have approved Avastin for patients with melanoma. The Powers That Be reviewed the information and concluded that while sufficient evidence shows that this medication can be effective for the treatment of melanoma, they do not approve it for this particular case.

With his insurance company denying the Avastin treatment, Tony and his wife have nowhere to turn. The Avastin cycle recommended by Tony’s doctor will cost $30K.

Tony’s family and friends are organizing a fundraiser to help pay for the cost of this treatment. A benefit concert featuring The Aquabats, Supernova and a special guest will be held Saturday, February 2, 2008 at The Glasshouse in Pomona, Calif.

In addition to the money raised from ticket sales, there will be a silent auction and a raffle of donated items that night. If you are able to, we ask that you donate an item for the silent auction or raffle. Further information about how and where to donate can be obtained online at www.myspace.com/topdogmax.

Thank you for your support.

Confirmed donors thus far:

Nike, Maroon 5, Kit Pistol, Plexifilm, Punk Rock Confidential, Dogpile Clothing, Fred Segal, Warner Avenue Animal Hospital, Warped Tour, Bamboozle Left, Aquabats, Supernova, Fluf, more confirmations coming in daily




INTERVIEW WITH TONY AND SINNAMON CARBONE FROM PRESS TELEGRAM (LONG BEACH, CALIFORNIA)
Dear Family and Friends,
This article came out in the press telegram today.

Cancer shadows L.B. teacher's future
Although supported in part by the generosity of
colleagues and family, couple faces overwhelming
financial burden.
By Kevin Butler, Staff writer
Article Launched: 01/15/2008 10:15:46 PM PST
http://www.presstelegram.com/ci_7982593

LBUSD teachers Sinnamon and Tony Carbone deal with
health insurance rejection and mounting bills as they
face Tony s brain cancer diagnosis. (Kathi Kent / For
the Press-Telegram)
LONG BEACH - About two years ago, Long Beach teacher
Tony Carbone and his wife Sinnamon were about to start
the next stage of their lives.
The couple, both teachers in the Long Beach Unified
School District, had just bought a new house in Bluff
Heights.

Tony was about to complete a master's degree in
educational technology, while Sinnamon was preparing
to start a business teaching Pilates at home to earn
extra money to help pay for their mortgage.

At that point, they had envisioned starting a family
in the next couple of years. But in December 2005,
those plans were halted when they discovered a
5-centimeter-wide bump on Tony's waist.

Tony Carbone, 34, was diagnosed with advanced
melanoma, a type of skin cancer, which six months
later had spread to create tumors in his brain.

Since his diagnosis, he has undergone six surgeries -
three of them invasive - while the couple has
struggled to keep afloat financially and battled with
an insurance company and the LBUSD to get
authorization for a treatment his oncologist says is
needed to extend Tony's life.

Tony said he had been a healthy person who was rarely
sick.

"Surreal is the best way to describe how it feels and
you just get frustrated when your life keeps getting
put on hold," he said.

Since his diagnosis, Tony has had medical
ups-and-downs. On Christmas night in 2006, while
visiting relatives in Palm Desert, he nearly died
after being rushed to the hospital

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when he complained of headaches and severe pain.
Tony, whose tumor was hemorrhaging, was saved only by
an emergency brain surgery, but was left partially
blind in his right eye.

The couple got some good news seven weeks ago, when a
scan showed no additional tumor growth. That
development allowed Tony to return to work at Lee
Elementary on Jan. 4 of this year.

Although still suffering from bruised ribs caused by a
fall about a month earlier, Tony was encouraged by his
oncologist to return to his job.

"He was exhausted, but he loved seeing the kids,"
Sinnamon said.

The couple saw a dramatic reversal in Tony's medical
fortunes less than a week later when an MRI showed two
new tumors. Also devastating was the knowledge that
cancer cells had seeped into his cerebrospinal fluid,
Sinnamon said.

Tony didn't return to his teaching job. He has tried
to remain optimistic during his ordeal, but it's been
difficult.

"It just seems every time I was in the clear, then
something came up," Tony said. "Everyone says melanoma
is so insidious. It's so hard to get rid of, and it's
so aggressive. It's like a monster living in your
body."

Tony Carbone began teaching nine years ago, after
spending time working as a sound engineer designing
speakers.

He didn't have to look far for inspiration. Both his
parents and Sinnamon's were teachers.

"I love working with inner-city kids," Tony said.

Tony also likes the other teachers at Lee. Teachers
and staff at Lee and at Renaissance High School, where
Sinnamon works, have contributed the bulk of nearly
200 donated sick days to Tony so that he can keep
getting his full salary.

But there is a limit to how many sick days he can use,
and Tony in the near future will have to go on
disability, Sinnamon said.

His disability insurance for two years will pay him
about 75 percent of his teacher's salary, a figure
that will drop to 50 percent after that, she said.

Meanwhile, his wife is running out of days to use to
take care of her husband.

"I don't know what's going to happen" after the days
run out, Sinnamon said. "It's difficult. Not only does
Tony need my care ... but he needs me around for moral
support, too."

The illness has forced Sinnamon to put her Pilates
business on hold, depriving her of income that she and
her husband were counting on to help pay the mortgage.

Tony, before his illness struck, had nearly finished
his master's degree - an achievement that would have
led to a salary bump at the LBUSD.

The couple also has struggled to get insurance
payments for a treatment that his oncologist has
recommended. Tony is on the school district's
self-funded insurance plan, which has Blue Shield of
California as its claims administrator.

The couple has fought to get coverage for the
medication Avastin, which inhibits tumor growth by
blocking the formation of new blood vessels.

The U.S. Food and Drug Administration has approved the
use of the drug for patients with metastatic
colorectal cancer and certain types of lung cancer.

Although not yet approved for melanoma, the drug has
been recommended by Carbone's oncologist as an
effective use for that condition.

Sinnamon Carbone said that the doctor, affiliated with
the Hoag Cancer Center Facility in Newport Beach, has
prescribed the medication to other patients with
melanoma whose insurance companies have paid for the
treatment.

Blue Shield denied coverage of the medication, saying
that there was insufficient evidence in peer-reviewed
journals to show its safety and effectiveness in
treating metastatic melanoma.

But Sinnamon said that her attorney provided numerous
peer-reviewed studies that have shown its safety and
effectiveness.

After exhausting appeals with Blue Shield, Sinnamon
said she asked the LBUSD to override the company's
decision and authorize payment for the treatment.

That request was denied in December, Sinnamon said,
leaving the couple to begin fund-raising to pay for
the $30,000 Avastin regimen.

A spokeswoman for Blue Shield of California said she
could not comment on Tony's case because of a federal
medical privacy law.

Chris Eftychiou, an LBUSD spokesman, also said that he
could not comment on the specifics of the case due to
medical confidentiality.

Family donations helped to pay for the first dose of
Avastin, which cost $5,000.

Despite the lack of coverage, Tony went ahead and
received the second dose this month, and the couple
hopes to raise money to pay for that bill, as well as
the remaining four doses, taken every other week.

What disturbs Sinnamon is the thought that the delay
in getting Avastin may have contributed to the
reappearance of her husband's tumors this month.

The couple is trying to raise money to pay for the
Avastin and other financial hardships.

"We don't want to lose our house," Sinnamon said.

They now are waiting for Blue Shield's approval for a
type of radiation therapy that the company has
authorized in the past, she said.

"We hope to have (approval) as soon as possible,"
Sinnamon said. "Every night I got to bed thinking the
tumors could start bleeding and Christmas night could
happen all over again."

Today, Tony is scheduled to have a stint implanted
into the base of his skull to allow for the delivery
of chemotherapy drugs.

A benefit concert, featuring the band The Aquabats,
will be held for Tony at 7 p.m. on Feb. 2 at The Glass
House in Pomona, 200 W. 2nd St. Tickets can be bought
from Ticketmaster.

A silent auction will be held Feb. 23 from 3 to 6 p.m.
at DiPiazza's, 5204 E. Pacific Coast Highway, Long
Beach.

Donations also can be made by writing a check made out
to Tony Carbone and mailing it to Harva Carbone, 9751
La Zapatilla Circle, Fountain Valley, CA 92708.

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3 Comments:

Blogger Stefania said...

Insurance companies are the enemy. This just makes me sick to my stomach. Can I post about this?

4:13 PM

 
Blogger foodiemama said...

please post about this. its another case of getting royally screwed by insurance companies in a horrific way. post as much as you liek because we would really like to get the word out!

5:40 PM

 
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6:07 AM

 

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