Many mothers can relate: 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 was advised 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 and/or death was real. Carolyn’s back was opened, spine rebuilt, and she awoke 8 hours later- trying to understand what the nexts steps were. The surgeon informed Carolyn that 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 diagnosis.
For Carolyn Cave, an active 39 year-old mother of two in Annapolis,Maryland, this is exactly how these events unfolded. The word CANCER becomes a resonating scream in a young mother’s mind but scarier words quickly join the conversation: SPINAL TUMORS, RARE, LIFE-THREATENING, SURGERY, METASTASIZED, CHEMO and RADIATION RESISTANT, and POOR PROGNOSIS.
Carolyn’s medical team suspected her cancer was a type of Sarcoma, a family of cancers which account for only 1% of adult cancers in the world today. 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- it is EXTREMELY RARE, with approximately 100 cases diagnosed worldwide every year, ALVEOLAR SOFT PART SARCOMA (ASPS)- this is what Carolyn learned she has.
ASPS has one major treatment hope thanks to new research in the field: IMMUNOTHERAPY. 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% success rate, with new research and new drug regimens being run in clinical trials everyday. The drugs for these treatments are costly, $25,000 for every 3-week dosing, for a yearly total of about $500,000.
Carolyn’s health insurance company denied coverage for the drugs that she is in need of. Carolyn 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 State’s Attorney’s intervention, Carolyn’s appeal for coverage was granted by her insurer. There is a hefty copay associated with her treatment, $4000 every three weeks. While steps are currently being taken to see if this amount 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.
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.
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!
We start with a goal of $65,000 to help offset Carolyn's treatment costs during her first year of treatment.
Carolyn is fighting for her life- let’s give her hope for a tomorrow by giving today.
Please share Carolyn’s story with others. Your time, efforts, prayers, and donations are sincerely appreciated.
Colleagues, friends, and family have launched the Caring for Carolyn: a mother's fight for life campaign to assist Carolyn and her family with medical and associated expenses. Follow Carolyn's story at: https://www.youcaring.com/carolyncave-1116582 on Facebook, Twitter, Instagram, and other social media sites.