Friends Rally To Help Annapolis Mom Of 2 in Cancer Fight

ANNAPOLIS, MD — Many mothers can relate to a nagging backache attributed to hauling small kids around all day and night, but a backache that doesn’t go away, and gets worse, leads to a recommended MRI and a phone call one busy afternoon: “Your spine is broken... we don’t know why... your results show indications of metastatic disease,” cancer.

Carolyn Cave, 39, an Annapolis mother of two, was told to go the emergency room at Johns Hopkins in Baltimore. There was no time to think about what this cancer was, the cancer was growing around her spinal cord in multiple areas and Carolyn’s spine was collapsing due to this growth, the threat of paralysis or death was real. Doctors opened Carolyn’s back, her spine was rebuilt, and she awoke eight hours later trying to understand what the next steps were. The surgeon said there were very problematic tumors in her spine, he had removed one of the largest, but there was more work to do. The world “oncologist” became common in these conversations, and Carolyn and her family began to navigate what had quickly become a very complicated and expensive diagnosis.

Since the initial diagnosis Cave faces expensive medical treatments with a $4,000 copay every three weeks. To help Carolyn, her husband, Matt, and their children, Oliver and Solveig, friend Becky Webb-Morser has established a YouCaring online fundraiser. The initial goal is $6,000; to date about $28,000 has been raised.

"The number of challenges facing this family is overwhelming; through fundraising, we hope to answer at least one of the very real and constant issues that they are facing: the funds to fight this cancer," the website says. "We are asking you to unite with us in an effort to keep Oliver and Solveig’s mom here with them- they need her and she has many plans for her life and for her family’s future!

Cave has a type of sarcoma, a family of cancers which account for only 1 percent of adult cancers worldwide. While many sarcomas are resistant to common therapies like chemo and radiation, there are surgical options which can be effective for treatment and in the family of sarcomas, there is only one that is considered fatal, since it is the only type that will move to the brain. Her extremely rare cancer, which has about 100 cases diagnosed worldwide every year, is known as alveolar soft part sarcoma.

New research in the field shows that immunotherapy holds promise as a treatment for Cave's type of cancer. Medications are given to patients in an effort to “supercharge” the immune system in hopes that it will begin to detect and kill the cancer cells in the body. For ASPS, these therapies have about a 60 percent success rate, with new research and new drug regimens being run in clinical trials every day. The drugs for these treatments are costly, $25,000 for every three-week dosing, for a yearly total of about $500,000.

Cave’s health insurance company denied coverage for the drugs that she needs, friends said on her website. She applied for compassionate use from the drug manufacturer, but was rejected based on her household income. Finally, Carolyn’s friends and family launched a letter-writing campaign and with the Maryland attorney general’s intervention, her appeal for coverage was granted by her insurer. There is a hefty copay associated with her treatment, $4,000 every three weeks. While the family is trying to see if the cost can be reduced, this is just one of the many unforeseen bills that has arisen as part of Carolyn’s treatment journey.

Surgical bills, co-pays, physical therapy co-pays, and even additional babysitters have left Matt and Carolyn with a list of debtors and they now face not only the task of how to help Carolyn live, but how to pay for the services that she needs to live, Webb-Morser says.

You can find updates on the Caring4CarolynCave Facebook page or on Instagram at @caring4carolyncave.

Photo of Carolyn Cave and family used with permission