Betsy has a very rare cervical spine brain tumor, a Pleomorphic Xanthoastrocytoma, a rare type of tumor, that spread to her brain lining. She was diagnosed on Dec. 18, 2008.
Betsy's journey began in Oct. 2008, while she was pursuing her Masters degree in Social Work from the U of St. Thomas/ St. Kate's, with the first of two bouts of meningitis symptoms. The second bout came in Dec. 2008. During this episode an MRI revealed a mass located between the C3 and C7 vertebrae in her cervical spine. The doctors at the U of MN believed she had a dermoid cyst and because of the complications it was causing her, surgery to remove it was scheduled. Dec. 18, 2008, Dr. Hunt performed the surgery, only to find a tumor, not a cyst. During the 6 hour surgery, 80% of the tumor was resected. Surgery stopped when Betsy stopped responding to stimuli on her right side. A biopsy was done on this tumor and it was found to be a very rare Pleomorphic Xanthoastrocytoma. This is a intermediate, grade 2 cancerous and rare brain tumor. To find one like Betsy has, in the spinal cord, is reported only a few times in the literature. Hers was entangled in and around the cord. To make things more difficult after surgery, Betsy had to learn to walk all over again. The deficits the surgery left her with were devastating. She would spend the next 5 weeks in a rehabilitation hospital. She had considerable weakness in her right leg, arm and hand. There was some on the left side as well, but not as severe. She did eventually regain some of her mobility and is walking, but still has neurological deficits today. She has been unable to return to graduate school. Three months after surgery, in Feb. 2009, Betsy had a VP shunt placed in her brain to help remove the spinal fluid from her brain. The tumor leaks protein and gunks up the flow and re-absorption of excess fluid, causing serious build up on the brain. At this time, we received difficult news that the tumor had laid a covering of cells on her brain lining in the area of the brain stem and cerebellum. Immediate chemotherapy was recommended. Betsy began in Feb '09 with a cocktail of Carboplatin & Temodar. This combination caused many negative side effects, including pancreatitis, several procedures to correct it, a need for gallbladder removal, a need for hormone replacement and vertigo, to name a few. This was discontinued and a new combination was started in July '09 of Avastin & Irinotecan. She continued on this for 9 months for a total of 14 months of chemotherapy. Throughout this time, Betsy struggled with the typical effects of chemo, as well as struggling with the deficits created by the resection surgery. She began to have debilitating headaches in early 2009 and they continue to this day. We have yet to find an answer for the cause or a treatment for the head pain. The months of treatments yielded no changes with the tumor. No noticeable growth, praise God, and no noticeable shrinking. It was decided to stop treatment and monitor with MRI's every 3 months. This is where we are today. Waiting, watching, and looking for answers wherever we can, and praying for her recovery and healing. Each day has its challenges for Betsy. Her quality of life in the physical sense is not good. Her attitude and perserverence are awe inspiring. The journey and the fight continue. God Bless you for following along with us and we ask for your continued prayer support and friendship.
UPDATE: Betsy will begin 6 weeks of full spine and brain radiation March 3 2011 to try to slow the tumors progression and its symptoms at Mayo Clinic in Rochester, MN.
Cards can be mailed to Betsy Elsen 112 Willow Drive Delano, MN 55328 or DONATIONS accepted at Betsy Elsen Benefit Account Crow River State Bank 710 Babcock Blvd, PO box B2 Delano, MN 55328