Merry Christmas and Happy New Year!
I hope everyone is enjoying quality time with friends and family throughout this holiday season. We were gifted more beautiful snow this morning.
I realize how blessed I am to share another Christmas with my sweet family. I think about others with GATA2 and recognize how very fortunate I am to hug my grandbabies on this special day. My heart aches for the families who have lost loved ones to this challenging illness. I think about you a...ll so often. And to the GATA2 patients who continue to fight through adversity-- just keep on, keepin’ on. It’s days like today that make it all worth it.
To me it’s the subtle things that bring immense joy. Like when my smiling grandchildren reach out for me to hold them. I was enamored watching my grandson’s eyes light up when he held his new Big Bird for the first time. It’s these precious moments that I am grateful for.
I got the best Christmas present a week ago. The persistent complication that has required six visits to the National Institutes of Health (NIH) this year has finally responded to an experimental IV drug therapy. Ray and I couldn’t be more relieved. The NIH continues to monitor me closely with frequent laboratory tests because none of us are sure if the new treatment will work long term but for now I am feeling better and am grateful that “the plan” worked.
Be merry, stay warm and let the joyous moments fill you with happiness.
Fall is my favorite season. It’s so beautiful watching the leaves change in a symphony of colors. I’m always filled with immense gratitude when I’m surrounded by such wondrous beauty.
Speaking of beauty, my youngest daughter, Makenna, was married on September 9th. It was a picture perfect day for Ryan and Makenna’s outdoor wedding and it was wonderful being surrounded by so much love. To those that were there, thank you for filling the day with special memories. Ray of...ficiated their wedding and I walked Makenna down the isle. I was filled with a new depth of gratitude all day for everyone that has helped me through this arduous and challenging journey. Honestly, through the years of battling GATA-2 and an experimental bone marrow transplant, I really wasn’t sure that I would live long enough to see my children married. I am extremely blessed to have been well enough to participate and to share such a special moment with my family and friends.
Ray and I head East to the National Institutes of Health next month. For now, I’m doing all I can to slow down the progression of the graft versus host disease (GVHD) which includes daily stretching and physical therapy. I’m still on an experimental medication for the GVHD and it’s a challenging cancer drug to withstand. Unfortunately, one of its side effects is lowering all of my blood counts. The anemia continues to seriously impact my energy levels and somedays it’s really hard to push through the fatigue. With so many medications to take and doctor appointments to go to, I’ve learned that it’s best to stick to a daily routine as much as possible. My top priority every day is to get some exercise. Even though the anemia is seriously hampering my endurance and my speed, I still bike or walk daily. The exercise makes me feel better - body and mind. The other thing that makes me feel good is to eat healthy. So much of living with chronic and progressive diseases is out of my hands but anything I can control the outcome of, I do. Nobody else can do these things for me and in some small way I feel like I have some control over my illnesses.
Going into Fall, I hope that all of you, my friends, find something to be truly thankful for. I know that me and my family are all extremely grateful to each of you.