May 10, 2017
I am running in honor of my big sister Rose Patricia Vogel who we lost to NF1 (MPNST) January 13, 2011. Rose was diagnosed with NF at 13 years old when neurofibromas presented themselves on her arms, legs and torso. At age 20 she had her first surgery to remove a tumor from her breast, which was very successful. For many years Rose was a vibrant, successful and very healthy woman. Although NF prevented Rose from having children of her own she was the ultimate 'mom' to me, our sister Susan, my 4 children and so many others. Rose never ended a conversation without asking me 'is there anything I can do for you?' or 'do you want me to come over and help you?'. She was hundreds of miles away- but she came to help me whenever I needed it.
By age 43 Rose started experiencing significant pain on her left leg and foot. At first no one knew what was causing the pain. When doctors decided to see if it was related to NF they found a spinal tumor at S1. This was the beginning of her long, painful medical journey. Cyberknife radiosurgery was unsuccessful. The first surgery scheduled to remove the S1 was cancelled at the last minute due to a composite pheochromacytoma. Surgery was finally scheduled to remove the S1 tumor. It was the size of a golf ball and pathology found it to be malignant. Six weeks of radiation was started but was unsuccessful. Our precious Rose was growing significantly weaker and losing weight. The last procedure was a trial for a spinal cord stimulator which she did not pass. At this point Rose was hospitalized and palliative care was given.
Rose passed away 7 weeks later just shy of her 50th birthday. She had wanted to donate her tissues and organs but it had not been officially arranged. Because of the diligent efforts of our sister Susan, Rose's brain and tissues were donated to Harvard Medical Center. (Yes, we do brag that our sister went to Harvard Medical School). Rose was beautiful, kind and loving....even in her last year while she endured excruciating pain she seldom complained. My parents, Robert and Patrica Vogel miss her immensely as do my sister Susan and I, my children and so many others. This race falls on my 51st birthday and there is no other way I would rather spend it than to raise awareness as well as funds to help find a cure for NF and support all the work the Children's Tumor Foundation does. PLEASE HELP #ENDNF !! CHEERS TO ROSIE!!! We love you!! XOXOXOXO