Kevin Griffith Battles Rare Cancer With a Little Help From His Online Friends

Kevin Griffith was diagnosed with a rare cancer (Alveolar Soft Part Sarcoma) in February, and the Aliso Viejo 29-year-old's family discovered he would require multiple international surgeries.

So, they've turned to the Internet for help.

Griffith's family created a profile on, a crowd sourcing website that allows friends, family and even strangers to donate any amounts they can to help the sick or injured with medical bills.

His profile raised $4,000 the first day and more than $67,000 as of last week. GiveForwrd says since its 2008 launch, more than $27 million has been raised for people like Griffith.

The campaign for Griffith ends Dec. 15. A letter that accompanies his profile follows . . .

As some of you know, back in February 2012 Kevin was diagnosed with Alveolar Soft Part Sarcoma, an incredibly rare cancer with no cure and no clear treatment path. He was two months off from his 30th birthday and had never had a serious illness.

From there, it became a series of visits to doctors and hospitals, constant tests and scary news. He had his first tumor removed, then weeks of radiation, only to hear a few months later it had already spread to his lungs. His oncologist told him tiny tumors had begun to grow in both his left and right lung--so many that the pathologist simply wrote "innumerable growths" in their report.

Until this cancer hit, Kevin dreamed about being an entrepreneur and starting his own company. He loved to eat pepperoni pizza and peanut butter milkshakes. He liked to make funny noises and could beatbox a mean Zelda theme song. He would stay up marathoning TV shows or playing video games all night. He would hit the gym almost every day with co-workers, and organize running groups. He DJ'ed, ran sketch groups, and liked throwing parties for his friends. One year, he decided to throw a Bill and Ted themed Halloween party, and got a bunch of us to build the phone booth from the movie. Yeah, he is that kind of guy. A good friend, a loving partner, and a great artist who loves making video games. But when he found out he had stage four cancer at age twenty-nine, it was hard for him not to feel like the world had been turned completely upside down.

Because of the location of his tumors, Kevin is considered unresectable. Chemo was off the table, as it was proven to be ineffective on sarcomas even accelerating the growth of tumors in other ASPS patients. Some patients have had limited success with systemic treatments with a class of drugs known as TKIs. But even there, the gains have only been temporary and among long-term ASPS survivors, drugs are seen as the last option. Only early detection, aggressive monitoring, and surgical removal of metastasized tumors has been shown to be the best chance for long-term survival.

This is where the story gets a little bit better.

In Germany, there is a well-respected surgeon who has pioneered a new type of laser aided lung surgery and has been using it for over a decade to successfully resect lung tumors, without significant loss of lung tissue. A number of other ASPS patients have sought treatment from Dr. Rolle and our oncologist recommended this as Kevin's best option. His clinic is considered one of the leading centers for thoracic surgery in Europe, and best of all, he agreed to take Kevin as a patient.

But insurance refused to cover the costs of an international surgery. In spite of this, feeling that this was his best chance, Kevin paid for the first surgery to remove tumors from his right lung out of pocket, $15,000 just for the procedure and associated hospital fees. This did not include the roughly $6000 that was paid for travel and lodging. When we got back from Germany, we submitted a claim to Cigna, but the case is pending, under review. We've already been told we have little chance of winning. International surgeries are simply not covered by our insurance policy, even if it's the best chance of survival for Kevin.

Which is what leads us here. Friends, compassionate strangers, please help us. After weighing all the options it still feels like this surgery is Kevin's best chance. Even though we know we'll probably have to eat the costs ourselves, Kevin wants to return to Germany to clear out his other lung of tumors. It will be another $20,000, which will be the last of our savings. We also know this won't be the last expensive medical procedure Kevin will need. Which is why, as hard as it is to ask, we need help.

Until the US gets their act together and approves a similar procedure here in the US, we will have to continue flying to Germany to see Dr. Rolle. It's our hope that eventually the tumors in his lungs will be reduced to the point where we can individually cryo-ablate them, a procedure that can be done in Chicago. Kevin has also aggressively changed his diet and lifestyle in the hope that this will slow down or even stop the regrowth of his tumors.

Either way, it's a long road ahead of us. I ask you to please give whatever you can to help us. Whatever we don't use for this surgery, we will be keeping for ongoing medical costs. We both work and are doing our best to move our finances around to prepare for the ongoing medical bills, but right now, money is tight.

I know it's a lot to ask, and even with treatment Kevin's future is uncertain-- but what it will do is buy Kevin time. Time for the doctors to search for solutions, for more drugs to be approved, for more research to be done on this awful disease. Maybe, even a cure.

But in the mean time, we need your help. Give whatever you can and from the bottom of our hearts, sincerely, we thank you for helping us get through this.

Connie and Kevin

To give you a rough breakdown of where the money is going:

-operation costs (since insurance is not a sure thing)
-travel costs for treatment (flights, hotels and food)
-co-pays (frequent UCLA visits)
-non-FDA approved chemo drugs (Tyrosine-kinase inhibitors, if and when he decides to start)
-ingredients for juicing/blending (organic vegetables etc)
-supplements (vitamin C,D, fish oil, calcium etc)

Again, whatever we don't use will be carefully saved and used towards future medical costs. Back to back surgeries not covered by insurance have drained us financially, but we have every faith that if we're careful with this money we can make it last.

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