In December 2016 I was diagnosed with pleural mesothelioma. Mesothelioma is considered universally fatal and I was given a life expectency of 2 years. With two young children , it's been difficult to imagine not seeing them grow up. I decided, in conjuction with my doctors, that I would opt for "active survellience" for as long as possible. It is important to me to maximize my actual livable days with my family vs just gaining days. With this, my doctors told me to do all I could to live my life and make memories with my boys.
Today we learned that the mesothelioma has begun to grow, with 4 new lesions seen on my CT scan. This has once again led us to an area of uncertainty and will require a multi-diciplinary team to help determine our next course of action and treatment. These new findings also have made it more important than ever to do all I can to make as many good memories for my kids as possible. The boys and I have talked about things we would like to do, including visiting new cities, seeing a prefessional football game, and embarking on new adventures among other things.
I'm hoping to complete as many of these things with them as possible, but of course need to fit them between doctor and hospital visits and difficult treatment options. We have moved in with my parents so they may help care for me and to help ease the financial burdeon but since I'm now totally disabled, it can be hard to always have the finances for everything we would like to do. We also worry about the boys' futures and the abilty to pay for their education, etc with limited resources. After discussing these concerns with loved ones, the decision was made to set up this Go Fund Me.
Since receiving this diagnosis I have been humbled by the outpouring of love and support. I am so grateful that my family and I are surrounded by so many amazing and caring people, if not by proximity then in our hearts.
For anyone who would like to follow my journey, you're welcome to check out my facebook page @butterfliesforrachel
. We will work to keep this page as updated as possible, if for nothing else, to raise awareness of the late effects of childhood cancer treatments and the need for more research into childhood cancers.
Love to all.