The one
Google. It’s a friend and an enemy. Who hasn’t googled this or that and often been disturbed by what they find, especially if it’s a medical question. I still don’t know what search path led me to Melissa Wiggins and her foundation CKc Cannonball Kids Cancer Foundation, but I am damn well sure it started with the omnipotent google. Shortly after diagnosis, we let Charlotte’s Preschool know that we needed to rescind her registration for the 2016-2017 school year and we also out right asked for prayers. The director Wendy, who is also a member of our church, was processing our refund and wanted to let me know she had a contact to introduce us to whenever we were ready. This contact was a mom of twin girls at preschool and was the CEO of a foundation for pediatric cancer. Turns out the mother who started this very foundation is the mother of Cannon, also battling Stage IV Neuroblastoma. I thanked Wendy, but I was not ready to contact anyone. We were still in shock and processing and very afraid but I kept the foundations name in the back of my mind and then one night, I googled it.
During this google moment, Charlotte was newly diagnosed and I was sleeping by her hospital bed, well by sleeping I mean laying in the dark and researching everything I could about Neuroblastoma on my iPhone. I found the CKc foundation webpage and little Cannon’s story. His mom, Melissa Wiggins, had a link to her sons carepage on the CKc foundation webpage. Turns out, she started this foundation to support research that gives kids with many forms of pediatric cancer better treatment options then what is currently available. She helps fund many clinical trials including the one that saved her son who had same diagnosis as Charlotte. As I laid there reading the foundation webpage, I clicked on her blog link and read what she had written recently about Cannon. To my surprise, this boy was still alive. And his mothers post caused me to sit straight up in that dark hospital room only illuminated by various medical machine lights and the dimmed hallway lights peaking through the closed door. Melissa wrote essentially about the recent straw that broke the camels back. Cannons post treatment dental appointment revealed that most, if not all, of his permanent teeth under his little 5 year old gums would not be viable. Treatment had destroyed them. And I was moved by this story for many reasons but what grabbed me was that Cannon was alive.
See, up until that point, we had such a limited view. The one experience I had with knowing anything about Neuroblastoma was through my childhood friend and college roommate Shannon, whose son Trevor was diagnosed with Stage IV Neuroblastoma almost 10 years before Charlotte was but he did not survive. In addition, several foundations had sent up care packages to our room after diagnosis and one even personally reached out to us to see how they could help, but in every single instance, their child had died. Each foundation was formed by parents who child had died of cancer. Each story was full of little faces who were no longer here but their parents were. And they were working so hard to honor their child. We, of course, were touched by this kindness and the gifts and support, but it was incredibly difficult to be approached by these individuals who lost their child to pediatric cancer. I remember looking at Brian, tears in both of our eyes, but declaring with force that one day we too shall give back but not because Charlotte died but because she didn’t. That we would be hope. And at that time, Brian and I so needed hope. I just needed ONE! I needed to see one survival story. Turns out, Cannon became my one.
At the time, Cannon had finished frontline treatment after a very difficult road. He was finishing a clinical trial with a medication aimed at preventing relapse called DFMO. He was not out of the woods but he was our one. He survived treatment. He had no evidence of disease. He was LIVING, albeit battling many side effects from treatment but he was living and about to start kindergarten and giving his mom and Dad chances to learn how to help him treat any treatment related health problems such as dental issues and hearing but HE WAS ALIVE! He still needed scans every few months to watch for relapse but he was HERE! And his mom, this Scottish firecracker Melissa, was a force of nature! She started this amazing foundation aimed at helping to fund important research in all areas of pediatric cancer. She helped fund the very trial her son was on. She was fierce and driven and passionate and a beacon. Cannon was a bright light of hope that I desperately needed.
I personally messaged her then and there. I also eventually reached out to Ashley, the CEO of this CKc cannonball foundation who lives in our town of Apex NC and whose daughters attend our church preschool we hoped and prayed Charlotte would be able to attend one day. Many months later, on a tour of Duke to meet with researchers there, they both walked into the day hospital where Charlotte and I were sitting! I posted about this before but what a moment it was. The reason all of this is flooding back to me today is because this week, Melissa updated on Cannon and the new is pretty amazing. He is 5 years cancer free! Scans clear! 5 years is the milestone where he will enroll in survivorship clinic! He is officially a survivor! And once again, he is our one.
We know Cannon isn’t the only survivor of stage IV Neuroblastoma. There are many many kids and research says the outcome continues to improve. But just like learning about Cannon post treatment while I was lying on the floor of the hospital back at the beginning, watching him reach the 5 year mark is another beacon. We all need those beacons of hope. Maybe somehow, someday, Charlotte and her story will light the way for someone too. And maybe Brian and I can somehow make a difference not out of remembrance of our baby girl, but right along side her.❤️🌈
Thanks for all the prayers for all of this time! We head to NYC next week for injection 6 of 7 of the trial she is on. Scans in June. Meanwhile, she is full of joy and zest and sugar and spice and LIFE. And we will take every single moment.
During this google moment, Charlotte was newly diagnosed and I was sleeping by her hospital bed, well by sleeping I mean laying in the dark and researching everything I could about Neuroblastoma on my iPhone. I found the CKc foundation webpage and little Cannon’s story. His mom, Melissa Wiggins, had a link to her sons carepage on the CKc foundation webpage. Turns out, she started this foundation to support research that gives kids with many forms of pediatric cancer better treatment options then what is currently available. She helps fund many clinical trials including the one that saved her son who had same diagnosis as Charlotte. As I laid there reading the foundation webpage, I clicked on her blog link and read what she had written recently about Cannon. To my surprise, this boy was still alive. And his mothers post caused me to sit straight up in that dark hospital room only illuminated by various medical machine lights and the dimmed hallway lights peaking through the closed door. Melissa wrote essentially about the recent straw that broke the camels back. Cannons post treatment dental appointment revealed that most, if not all, of his permanent teeth under his little 5 year old gums would not be viable. Treatment had destroyed them. And I was moved by this story for many reasons but what grabbed me was that Cannon was alive.
See, up until that point, we had such a limited view. The one experience I had with knowing anything about Neuroblastoma was through my childhood friend and college roommate Shannon, whose son Trevor was diagnosed with Stage IV Neuroblastoma almost 10 years before Charlotte was but he did not survive. In addition, several foundations had sent up care packages to our room after diagnosis and one even personally reached out to us to see how they could help, but in every single instance, their child had died. Each foundation was formed by parents who child had died of cancer. Each story was full of little faces who were no longer here but their parents were. And they were working so hard to honor their child. We, of course, were touched by this kindness and the gifts and support, but it was incredibly difficult to be approached by these individuals who lost their child to pediatric cancer. I remember looking at Brian, tears in both of our eyes, but declaring with force that one day we too shall give back but not because Charlotte died but because she didn’t. That we would be hope. And at that time, Brian and I so needed hope. I just needed ONE! I needed to see one survival story. Turns out, Cannon became my one.
At the time, Cannon had finished frontline treatment after a very difficult road. He was finishing a clinical trial with a medication aimed at preventing relapse called DFMO. He was not out of the woods but he was our one. He survived treatment. He had no evidence of disease. He was LIVING, albeit battling many side effects from treatment but he was living and about to start kindergarten and giving his mom and Dad chances to learn how to help him treat any treatment related health problems such as dental issues and hearing but HE WAS ALIVE! He still needed scans every few months to watch for relapse but he was HERE! And his mom, this Scottish firecracker Melissa, was a force of nature! She started this amazing foundation aimed at helping to fund important research in all areas of pediatric cancer. She helped fund the very trial her son was on. She was fierce and driven and passionate and a beacon. Cannon was a bright light of hope that I desperately needed.
I personally messaged her then and there. I also eventually reached out to Ashley, the CEO of this CKc cannonball foundation who lives in our town of Apex NC and whose daughters attend our church preschool we hoped and prayed Charlotte would be able to attend one day. Many months later, on a tour of Duke to meet with researchers there, they both walked into the day hospital where Charlotte and I were sitting! I posted about this before but what a moment it was. The reason all of this is flooding back to me today is because this week, Melissa updated on Cannon and the new is pretty amazing. He is 5 years cancer free! Scans clear! 5 years is the milestone where he will enroll in survivorship clinic! He is officially a survivor! And once again, he is our one.
We know Cannon isn’t the only survivor of stage IV Neuroblastoma. There are many many kids and research says the outcome continues to improve. But just like learning about Cannon post treatment while I was lying on the floor of the hospital back at the beginning, watching him reach the 5 year mark is another beacon. We all need those beacons of hope. Maybe somehow, someday, Charlotte and her story will light the way for someone too. And maybe Brian and I can somehow make a difference not out of remembrance of our baby girl, but right along side her.❤️🌈
Thanks for all the prayers for all of this time! We head to NYC next week for injection 6 of 7 of the trial she is on. Scans in June. Meanwhile, she is full of joy and zest and sugar and spice and LIFE. And we will take every single moment.
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