Helping Fellow Brain Tumor Patients

In lieu of favors for our upcoming wedding, my fiance and I, along with my parents, have decided to make a donation to a cause that's really dear to our hearts, the Oncology Social Work Fund at Smilow Cancer Center.   Before I explain the incredible things this fund does for patients undergoing brain tumor treatment, I want to share my story in hopes that it inspires you to contribute to this effort.  

I was born with a tumor in the right temporal lobe of my brain.  For the early years of my childhood, my life was comprised of seizures, medications, tests, MRIs, and doctors' offices.  By the time I was 5, they had managed to control the issue and I was symptom and medication free from that point on.  For proactive measures, I continued to have annual MRIs to monitor the tumor and, to my relief, it went without change for nearly 20 years.  By my mid-twenties, they actually had me start coming in every two years because I'd had such good luck and they felt comfortable spacing out the scans.  And then with one heart-stopping moment, everything changed.  

Six years ago I went in for my regular checkup, and the doctors found something new.  I still remember sitting in Hartford Hospital with my parents as they showed us the MRI image of the tumor in my brain.  I'd seen hundreds of these scans before but this one was different.  "The tumor appears to have changed composition" they said, as they pointed to the image, and they went on to advise that brain surgery would be best to determine what kind of change it really was.  I will never forget the all-consuming fear as they relayed this information.  I remember looking at my parents in anxious disbelief as we tried to digest this information and trying to process the thought of having brain surgery after over 2 decades of healthy results.   After getting a second opinion, we scheduled my surgery at Smilow Cancer Hospital of Yale New Haven.  

I was in the hospital for several days and out of work for 5 weeks.  Recovery was probably the most difficult thing I will ever endure.  I remember moments where the pain was worse than I had ever imagined it could be and the pain killers were useless.  It was exhausting to walk across the living room and I couldn't walk or bathe alone for weeks.  I couldn't open my mouth enough to bite into anything and I couldn't see out of my right eye when I looked down.  Half my face wouldn't move for weeks and I was vainly terrified that I would never look like my previous self again.  There is truly no way I would have made it through that without my parents.  My Mom was by my side day in and day out, supporting me, pushing me to be strong, timing my meds....she was everything.  And my Dad, who worked to make sure my Mom could be home with me, and who did anything and everything to cheer me up and make me smile along the way- including taking videos of me making funny faces while my face was half paralyzed.  I will never be able to properly thank them for everything they did for me during those weeks.

All in, it was a terrifying, traumatic, and painful experience but I was extremely fortunate to learn that my brain tumor was not only benign, but among the least likely to regrow.  I will forever feel grateful and blessed for how lucky I was for the diagnosis.  If it weren't for my family, my former employer, and my support system, this experience could have negatively impacted the rest of my life.  Instead, I live a healthy, happy lifestyle.  I do have some short-term memory loss, a slightly dented face, a metal plate in my head, and annual MRIs to make sure the ole noggin is still chugging along....but I am so extremely lucky for my health. 

Going through something like this gives you such perspective on the world, and it's not lost on me that there are so many people out there who are not as lucky as I am.  So many who are affected by the emotional, physical, and financial repercussions of this experience in ways that I was lucky enough to avoid.  There are many people who don't have the support system or financial ability to make this experience a little easier to undergo and I would do anything to ease the burden of this experience.  With that in mind, we wanted to use our wedding as an opportunity to celebrate our good fortune and help others by paying it forward.  

In lieu of wedding favors, we're making a donation to the Social Work Oncology Fund at Smilow Cancer Treatment Center.  Their social workers identify tumor patients in need and then allocate these funds to help them buy food for family members, gas for trips to and from the hospital, wigs for chemotherapy patients, physical therapy, and similar health-related expenditures they couldn't otherwise afford. This fund is not used for research or administrative purposes, but goes directly to tumor patients in real need. 

As I embark on the most exciting chapter of my life and marry the love of my life, I want to do whatever I can to help others power through brain tumor treatment in hopes that they can experience the happiness I have today.  In that light, we are collecting donations from friends, family, and colleagues to help make this donation as impactful as possible.  I would be extremely grateful for any donations you would be willing to make to benefit this incredible cause.  I'm not usually one to ask for favors but since I only get one wedding, I'd like this to be as meaningful of a contribution as possible, with the greatest possible outcome for those in need.  Lastly, I would also be greatly appreciate if you could share this with others who may be interested in supporting the cause.

Thank you in advance for any support you're willing to give to this cause. It means so much to our family!   




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Kathryn Mary 
Rocky Hill, CT
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