11 Days to the start of The National Park run for Anna Rose
In eleven days I will begin a 9 month journey to run/walk/hike/kayak all 49 of the National Parks in the contiguous states. It will be bittersweet. Anna and I were supposed to be running all of the parks together. I know she will be with me the entire time and I hope she will be proud of the endeavor to bring education and awareness of the cancer that took her life.
Anna, our beautiful daughter, died on March 26th of this year from a rare cancer. It was Adrenal Cortical Carcinoma, part of the NET cancer realm. NET stands for Neuro-Endocrine Tumors. We had never heard of this cancer and soon found out most people haven't. NET cancers (65 of them) are the #1 misdiagnosed cancers! They mimic other conditions and cancers and by the time they get a proper diagnosis, it's usually too late. Unfortunately, the medical field is not well educated on NET cancers and this delays a proper diagnosis and treatment. This is why I approached Dr. Liu (Anna's Dr. & Chief Medical Officer of Healing NET Foundation) and Cindy Lovelace (CEO of Healing NET Foundation) to see if they thought my crazy idea of running through the National Parks could be used to bring awareness to the public about NET cancer. They thought that it could. So we are working together to bring awareness, raise some funds for some very promising treatments, and to honor the amazing young woman that I was humbled to be her mom.
It's been such a pleasure to work with Cindy Lovelace, CEO of the Healing NET Foundation in Nashville, TN. We all tend to think "yeah, just another foundation looking for money", but this foundation is different. Why? Because the CEO is a NET patient...and cares deeply. Cindy was in the media world for many years and most in the business know her name. When she was diagnosed with NET, she decided to use her many talents to help change the face of NET. She works diligently everyday to make a difference. It has been a joy getting to know her and work with her.
We are so blessed and fortunate to have Dr. Eric Liu here in Denver! He is the guy who knows the most about NET in the US and works tirelessly for his patients. He truly loves his patients and it shows. Between him, Dr. Alan Cohn, and the stellar medical staff, they care for their NET patients with the best care available in the states. I will never be able to thank these wonderful people for the great care they gave Anna and us.
I especially want to thank my husband, Fred. He has been so supportive in encouraging me to see this through. He's the one who is working and financially funding this whole expedition. He will be joining me for parts of the journey, but mostly he will be holding down the fort and caring for Belle & Leo (our dog & cat). We are both still heavily grieving the loss of our only child, so this isn't an easy thing for either of us. I couldn't do this without him.
Many, many thanks to all of you for all your love and support. You keep me afloat in this tumultuous ocean of grief. It will be a honor to share this journey with you.
To all NET patients, you go through so much and I hope in some small way you will find pleasure in the pictures and blogs of the National Parks. Mostly, I hope you will find hope and love. You are the most beautiful of Zebras!
I will be going into more detail of the disease later in other posts, but for now I encourage you to go to the web site of the Healing NET Foundation to learn more about NET cancer. thehealingnet.org