Mar 13, 2018 Latest post:
Nov 11, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends of Kay Cannon updated in one place. We also hope, that as we need actual and practical help, that this might be a place where that can be coordinated.
You may or may not have heard that Kay was diagnosed with a brain tumor in her thalamus (center of the brain where all of our abilities come from like walking, talking, seeing, etc.—It is our brain’s activity center engine). Kay has been followed by one of the United State’s foremost Radiation Oncologists, Dr. William Regine, University of Baltimore, Maryland who coordinates a large interdisciplinary medical team of the best of the best in their fields, for the last three years. On Friday, March 9th Kay went to the University of Kentucky Med. Center ER for what we thought was an unrelenting sinus infection. She was discharged and UK called back 45 min later and said Neuro Surgery wanted her admitted. We returned and were told that the tumor had actually grown 4% and was now “angry” looking. The Chief of UK Neurosurgery told us that it needed to be re-sectioned (removed) as soon as possible. Kay did not have an active sinus infection at all. Due to the growth of the tumor it has caused her brain to actually shift and is causing severe headaches and other symptoms.
As you can imagine both Kay and her partner Lynn have been dreading hearing these exact words for the last three years and had hoped, beyond hope, that we never would. This surgeon said that this surgery carries up to a 40% chance of permanent disability or paralysis. Kay and Lynn have chosen to not have any surgery or major treatment done in Kentucky. After spending a whirlwind of time and energy over the weekend and days since contacting our dear friends and family and agonizing over the many decisions we face we now have an appointment with the Neuro Surgeon on Dr. William Regine’s team in Baltimore, MD this coming Monday, March 19th at 11:00a.m. We have been told to pack enough to stay for awhile. Kay’s huge brain surgery will take place next week. We will update the journal letting you all know exactly when Kay will face this step.
Some of you know part of Kay’s family history. If you don’t it is important to let you know that Kay and her sister Susan’s Dad died 5 years ago from a glioblastoma. His Father, their Grandfather also died of a glioblastoma. Once this tumor has been removed one of the most important steps will occur which is determining the pathology of what kind of tumor or cancer it is and then how best to target it with the best and most up to date technology available which is, in part, Proton Radiation state-of-the-art therapy. Proton therapy radiation will be used with chemo therapy for 6-7 weeks at some point after the surgery has been performed and Kay has had some time to heal and regain her strength to face the next intense phase of treatment in Baltimore. Also, we are concerned that it is possible for this tumor to grow back quickly and aggressively again. However, the exciting potential for real treatment will be due to the proton therapy radiation. It is relatively new but is exciting because it targets only the bad cells rather than destroying all the cells around where the rumor was. This is especially critical in Kay’s thalamus.
On a side note, Kay and Lynn would like you all to be very aware of doing your own research when given almost any medical diagnosis. Most of the research says that glioblastomas are not genetic or inherited. Really??? Three immediate family members now have been diagnosed with this kind of brain tumor. The jury is still out until after Kay’s surgery to complete the pathology component in determining exactly what this tumor is but our advice is to always ask questions, seek other opinions and find the BEST resources and cutting-edge therapies whenever possible.
This is a deeply scary time and Kay is facing the battle of her life! We are so deeply blessed with our beloved families who are tenacious in their love and care and in the vast network of friends (also chosen family) who have mobilized to offer their wise counsel, practical help, so much love and support! We are deeply blessed to have family members and close friends who have MD’s/ Phd’s/ Nursing Experts/ Hospitalist Experts and of course Kay’s background as a Neuro Physical Therapist for 20+ years and all the amazing PT’s who will offer their care, counsel and support during Kay’s recovery from surgery, chemo and radiation and recovery. We intend to keep all of you updated on a daily and/or regular basis if possible! We may also use this space, at times, to ask for practical help and to tap into your wise counsel.
We deeply appreciate your support, love and words of hope and encouragement. See the journal entries for ongoing details. Thank you in advance for your care, prayers, hope and any practical help you are able to share. We are deeply thankful that Mary Anne and Robert Zeigenfuse will be keeping our three beloved dogs at their home while we are away. Mary Anne is the Senior Vet Tech at our Vet. Our beloved 13yr-old Aussie, Kellan, is in heart failure and we know that she will receive the very best 24-hour daily care possible and that they will be able to quickly do what is best for her quality of life while we are away! Our two 14 yr old cats will stay at home and have great care too.
A special thank you to our dear friend-sister, Pamela Richarde, for setting up this site and Kay’s GoFundMe pageand helping Lynn keep the updates flowing too!