Family and friends raise money for loved one with rare bone cancer

Carl Kinsel and his wife, Keri, have learned a lot over the last year ? but their biggest lesson has been on love.

After Keri was diagnosed with Ewing?s sarcoma ? a rare form of bone cancer ? Carl?s ex-wife, Meredith Kinsel-Ziter, learned that Keri?s insurance provider wouldn?t cover the cost of a procedure that could keep the sarcoma from returning. So, she created a website, rally.org/caringforkeri.

The website describes how her ex-husband met and married Keri, how Keri is the girl of Carl and Meredith?s dreams ? as well as the dream of their daughters, Emma and Olivia ? and asks for donations to help cover the medical costs for which the Kinsels will be responsible.

?We have quite a bit going on with appointments and everything so (Meredith) spearheaded (the fundraising effort),? Carl said. ?Her and I are still really good friends. Once Keri met my daughters, we just became a larger family.?

The goal for the website, which has been up for a few months, is to raise $325,000. So far, donations have totaled more than $11,000.

Carl and Keri were married on July 2, 2011. That fall, Keri began experiencing pain in her back and her right forearm.

Thinking it was something that could wait, she continued working on her doctorate in musicology, teaching at the University of Georgia and helping Carl with his graphic design firm.

By Christmas, though, her back pain had grown too intense to ignore. Scans revealed cancerous tumors in her forearm and spine. The Ewing?s sarcoma diagnosis was made in January.

Ewing?s sarcomas are caused by chromosome changes after birth. In a process known as translocation, two chromosomes ?swap? small pieces of each other, resulting in an abnormal gene that can be detected with DNA testing. It?s not known why this translocation takes place. There are no identifiable risk factors that increase susceptibility to Ewing?s sarcomas, and it?s not passed along from parent to child like some inherited childhood cancers.

After talking with multiple doctors, the Kinsels understand that about 250 people a year are diagnosed with Ewing?s sarcoma. Most Ewing?s sarcoma cases are found in children ages 10 to 20.

?Basically, your parents didn?t do something wrong; it?s not from drinking or smoking,? Carl said. ?We were pretty much told it was just bad luck.?

In late January, the Kinsels traveled to Moffitt Cancer Center, a nonprofit research hospital in Tampa, for what they thought would be four days of consultation. While they were there, though, doctors told Keri she needed emergency surgery to remove the tumor from a portion of her spine, and would need to start chemotherapy and radiation treatments immediately.

?(Moffitt) has an entire floor dedicated to Ewing?s sarcomas, and they deal with her type of cancer often,? Carl said. ?We wanted to make sure she was getting the best treatment she could, and it just so happens that it?s about 45 minutes away from her parents? house. It makes it a lot easier.?

Keri has undergone six weeks of radiation and 26 weeks of chemotherapy. She?s responded to the treatments well so far, but Ewing?s sarcomas are known for returning. Doctors feel Keri is a good candidate for a procedure that has seen promising results in Europe. The procedure involves extracting and storing Keri?s own bone marrow, followed by very powerful chemotherapy, after which the bone marrow will be reinfused. Keri recently underwent a week of pre-operative testing in preparation for the bone marrow transplant.

?It?s more about the remission,? Carl said. ?The percentage of it coming back for people who have undergone this bone marrow transplant showed that it was less likely to come back.?

This news has, however, been counterbalanced by news that her health insurance provider has deemed the treatment unnecessary ? meaning the Kinsels will have to pay the $450,000 bill for the procedure. The insurance company also lowered the annual cap on Keri?s health insurance from $250,000 per year to $150,000 per year.

?(This bone marrow transplant) hasn?t been done a lot in the States, so I guess there?s not a lot of proof, so it?s really easy for insurance companies to opt out of covering it,? Carl said.

The medical team taking care of Keri is petitioning Moffitt Cancer Center to cover half of the cost of the procedure. That still will leave the Kinsels responsible for $225,000 of the cost, in addition to the nearly $100,000 that already has not been covered by the insurance company.

?Since Moffitt is a nonprofit, they don?t say if we don?t get the money (we can?t have the procedure). That?s not the way they usually work, which is awesome,? Keri said. ?They understand that people are not going to be able to pay $450,000 for one procedure. Social workers have said that in the past the hospital has comped some things for people that have financial requirements. I?m a student, so I don?t make any money.?

?Her doctors are great. I can?t say enough about them ? everyone at Moffitt has been incredible,? Carl said.

Even if the hospital agrees to cover 100 percent of the procedure, it can?t cover the pharmaceuticals that are involved, such as in the chemotherapy.

?The one thing I want people to get out of this, especially with student health insurance, is to really be aware of what your benefits are, because a lot of the time, you don?t know until you have to really start using them,? Keri said. ?It?s disconcerting that insurance companies, once they figure out that you have a serious illness, can still drop your care by that much money.?

The bone marrow transplant date has been moved two or three times due to insurance problems, but the Kinsels recently were told that Keri would undergo the transplant at the end of October. Once the procedure starts, she will be in the hospital for about three weeks, followed by multiple appointments for two weeks to make sure everything is stabilized.

?We should be back home (in Athens) by late November or early December,? Keri said.

The Caring for Keri website, and a Facebook page, have sparked various fundraisers.

The ex-boyfriend of Carl?s sister held a comedy show on Oct. 2 in Cincinnati with the help of fellow comedians and donated all of the proceeds to Caring for Keri. Also, seniors at the Vermont high school where Carl?s ex-wife works voted to donate all of the funds raised from an annual 5K race to Caring for Keri.

?Those kids have been really great,? Carl said.

A Facebook page and flyers titled Run for Her Life also are circulating to benefit Keri. Run for Her Life is a virtual run scheduled for Dec. 8. Unlike a traditional organized running event, a virtual run allows people the freedom and flexibility to choose a time and place that works for them to run or walk.

?I think all of the people doing these fundraisers know us. If there are strangers helping, it?s like we don?t know them, but somebody we do know does know them,? Keri said.

?Everybody has really rallied to Keri,? Carl said. ?There are a lot of strangers that have donated or posted (comments on the website and Facebook page). It?s been awesome to see that kind of love out there.?

?It?s interesting how social media can reach so many people,? Keri said. ?You hear about stuff on TV all the time of people murdering each other and then something like this comes along and you?re like, ?Oh, my gosh. Someone is doing this for me, and I don?t even know them.? There are really good people out there.?

For more information or to register for Run for Her Life, visit runforherlife.weebly.com/index.html. For more information on Keri and her progress, visit www.facebook.com/CaringForKeri or rally.org/caringforkeri.

? Follow faith, health and Blueprint reporter April Burkhart at www.facebook.com/AprilBurkhartABH.

Source: http://onlineathens.com/health/2012-10-08/family-and-friends-raise-money-loved-one-rare-bone-cancer

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