Here we are almost 2 ½ years from Shane’s diagnosis in December of 2021. He’s tried all of the available trials for his type of brain tumor with no success. The second trial drug stopped his growth completely for the entire time he was on it. Shane didn’t lose any teeth for over 9 months. Once off the trial his doctors were hopeful that his growth would resume and it did. He lost 6 baby teeth within a short time! We are still waiting and watching hoping that his permanent teeth are developing. Yet one more source of anxiety to add to the long list of things you don’t see coming during cancer treatment.
Shane is now receiving monthly chemotherapy infusions through a port in his chest. Several nausea medications and steroids accompany the chemo to help him better tolerate it. After starting this treatment, the MRI showed a small shrinkage of the tumor, however the second MRI 3 months later showed no change… but it didn’t grow. The doctors kept telling us “we call that a win”.
After months that have turned into years of doctor appointments, surgeries, blood draws, therapies, nausea, fatigue, anxiety, MRI’s, EKG’s, AFO adjustments, eye exams, PT, OT, acupuncture, disappointment and managing side effects from the treatments, we just wanted to hear the damn thing had shrunk.
Once again, we are participating in the Angels Among Us walk this April 27th. Two years ago we hesitantly joined the walk as we were still shell shocked by our new reality and not sure what to expect. As suspected it was a difficult day walking by the many signs with pictures of the sweet little angels who had lost their fight against brain cancer. However, we also walked with many SURVIVORS that day. It seems there is HOPE. However, HOPE doesn't pay to research and develop new therapies to defeat childhood cancer. It takes private and public funding to get new therapies to trial because it's just not lucrative enough for Big Pharma.
Pediatric brain cancer is the #1 cancer that kills children and it remains the least funded. Only 4% of our federal money funds research for all pediatric cancers. The "old school" treatments for pediatric cancer that have been around for decades are unacceptable for all our children. The goal is to find treatments that will work without destroying their quality of life and we are in a race against time.
We are so grateful every day for our Shane, our little warrior, and we will continue to fight by his side without hesitation! We could not have made it this far without the loving and unwavering support of our friends and family. Thank you, each of you, for lifting us up on this long and arduous journey. Shane is such a people person and he loves to be surrounded by his peeps. He once asked me on the way to school “if you had one wish, Aunt Dawnie, what would you wish for?” I immediately answered without hesitation “I’d wish for that brain tumor of yours to disappear and never come back!” Shane responded with “well, it’s not all bad. If I never had this brain tumor I would have never met all the nice doctors and people who help me.”
We are so lucky to live so close to Duke Hospital with its world-renowned pediatric cancer department. The team of professionals working with Shane are champions for his individual needs and care. Please, join me in supporting Duke in its groundbreaking research and advocacy for all our children by supporting our team and donating to the Angels Among Us walk. Even better, join our team for the walk! WE ARE STRONGER TOGETHER.
Peace, Love and Gratitude,
Aunt Dawnie
PS We are wearing the same blue/teal Team Shane shirts from last year. Some of you have red Team Shane shirts and that is fine too! If you don't have a Team Shane shirt and you can wear something in the blue/teal family that would be great. Maybe we'll be able to open the shirt order again for next year's walk.