May is National Brain Tumor Awareness Month! The Faces of Brain Tumors Day 13: Ron This face is a face of hope, love, courage and compassion. I met Ron on a blind date January of 1986. We fell in love immediately and were married by December 1986. July of 1991 we were shown the MRI films that would change our lives forever. But those results made our love stronger, our courage deeper and our compassion everlasting. His initial biopsy was a good tumor even though it had caused temporary weakness on his right side and speech issues. The good tumor was an astrocytoma grade 2-3. Ron recovered from the weakness and his speech improved. The good tumor was ready for an experimental radiation treatment at the end of 1992. Making the 30 trips to Boston feel like an adventure, Ron courageously rode the bus to south station and then the T to the hospital each and every day. Not letting the tiredness so well known to be a side effect of radiation affect him he did not miss a trip. Living with this diagnosis started to be our new normal between MRIs. Yes we lived from one MRI to the next, they gradually got to be 6 months then 1 year between them, until his speech faltered and his right side got weaker. He had 4 more brain surgeries to try and preserve the weakness and the speech but the hemiparesis and aphasia became the new normal. We searched for ways to augment his speech. There were devices back then but Ron had a great way of using gestures and facial expression to ease the communication gap. So we opted to continue to develop my interpretation of his gestures. The video attached is his most recent gesture that took me till the plane trip to DC to interpret. He had been letting me know he was thinking about our trip to DC by gesturing the dome of the capital and then the walking we would do around it. In 2010 after Rons 7th surgery we decided it was time to put our story to print and shared our book “Hope Through the Eyes of Love” with the world. This preceded our first trip to DC to participate in the Race for Hope walking with over 10,000 others to raise awareness. At Head to the Hill we determined that we are not alone in our passion to share our story to reach congress in asking for research funding for a cure. We are both passionate to share our story and let others know there is hope. We have gotten to know others who have left this world too soon, parents of children who can no longer hold their child in their arms and children who can no longer feel their Mom or Dad pat their hand with encouragement. Our hope is for those that are living between MRIs and the many that will be told tomorrow that they have a mass in their brain that there is hope. Hope to make each day they live a life of love, courage and compassion. Written by Patti Ron Gauvin With Sam Perkins Patti Gauvin Author - Hope through the Eyes of Love prgauvin.blogspot facebook/hopethroughtheeyesoflove
Posted on: Fri, 23 May 2014 20:26:59 +0000
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