I am a mother of 3 wonderful daughters, a wife, and up until last year, I was a special education math and science middle school teacher. Since my diagnosis, everything about my life has changed, and I have reached the point where I need to ask for help from the kindness of others. Thank you for taking the time to read about my condition, and my story.
It all began with low back pain. Mild at first, but intensifying over several weeks, and then it began to wake me in the middle of the night. Excruciating pain that originated in my low back and shot through both of my legs. In my ignorance, I assumed it was a pinched nerve, or bulging disc, as those are terms I have heard from family and friends, and “googling” my symptoms. I was finally able to see an orthopedic doctor who ordered an MRI of my spine. My results were shocking. They found 2 tumors in my spinal column, one in my lumbar spine (from L1-L5) and a second in my sacral spine (S1-S2). The tumors I have are rare, 1 in a million rare. I was the unlucky health winner, as I was the one. My type of tumors are called myxopapillary ependymomas. These tumors were first discovered in 1932, and there is little research done because of their rarity. Surgery and radiation are the generally selected treatments, with some doctors choosing to use chemotherapy. I had to have surgery as they were compressing my spinal cord. I had 4 laminae removed before they reached my spinal cord. Unfortunately, they were only able to remove a small piece of the larger tumor, because it was too entwined with my spinal cord nerves. They told me they could never operate on the tumor in my sacral spine – it was too risky. Although these tumors are generally benign, my tumor demonstrated malignant tendencies. After surgery I underwent radiation on both tumors, hoping they would shrink/die off. It has been 15 months since my surgery, and the tumors have not shrunk. The tumors are compressing my spinal cord nerves, which leaves me in chronic pain with limited mobility. The tumors are known to recur, and recently my doctors found that I have a third tumor in my cervical (neck) spine. As if that wasn’t enough, due to the trauma my body endured, it began attacking itself and I have developed an autoimmune disease as well. I am not out of the fight though! I will keep fighting for my life as long as I can…
I need your help because the cost of my care has exceeded my savings. I had saved for years, but there is nothing left. I have used all of our savings, borrowed as much as I could from family, and maxed out our credit cards to pay for my healthcare. We are behind on everything, my insurance is about to be cancelled, and this is only the beginning of the care that I may need as my condition progresses. I greatly appreciate any donation you are able to make, and if you are willing, prayers and/or positive thoughts are welcome.
In peace and love,
Amber