Tuesday, May 12, 2015

Hope

I wanted to send a brief update and thank everyone again for the tremendous support and love we've been given. The past couple of weeks have been very difficult, but we are still fighting hard.

Today, Jon completed his last session of whole brain radiation. It was really tough going in every day for 10 days, but he is feeling relatively well. He is tired and that could escalate over the next few days, but the doctors are very happy with his response. We go back for a MRI brain scan in four weeks to see if the radiation is working.

Further, we are looking at several clinical trials and have plans to consult with Dr. Alice Shaw. She is considered the best of the best when it comes to this specific type of cancer, so we are very hopeful in getting to meet with her and discuss future treatment options. There is hope in that others are doing really well on these prospective clinical trials and we ask for guidance on finding the right path for us right now. In order to do this, we will need to travel to Boston first, then possibly to a trial site in Nashville or elsewhere. For all those who have contributed and continue to contribute to our medical fund, I want you to know that without your support, this would not be possible. On our own, we do well to make rent and get groceries - like most struggling artists our age. We could never afford to travel for treatments, but because of you, we feel more empowered to get the care he needs. From the bottom of our hearts, thank you. Thank you so very much! We could never tell you how much your support means to us and the impact it has had on our lives. You are all loved and we are grateful.



Other than the going in and out of Emory and the fatigue, Jon is as sweet, loving, spiritual, and optimistic as ever. I know he has to be scared, but sometimes I wonder if he really is. He has such a beautiful outlook on life. We know all too much the temporal nature of this life, and while I get lost in the sadness of this, he continuously finds beauty and joy. Together, we can make a minute stretch into an hour, as we've learned to make the most of every single second. I can look into his eyes and forget every single pain I've felt from cancer. Every tear. I wish I could make it go away or I wish I could go back and live the last ten years all over again... but I can't. I just have to find the hope in the here and the now.

Finally, I just want to say thank you for all the little messages you wrote in on the Go Fund Me website when you donated. Some told us to "Keep Fighting" which made us feel strong. Others wrote personal stories and experiences they've dealt with in terms of cancer, these made us feel less alone. Thank you for your solidarity in this very human struggle. You are all in my thoughts and prayers as we carry each other through.



Love,
Robyn


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