CHARLOTTE, N.C. (WBTV) - September 10th: This email is from a Fort Mill mother:
“It was late September 2011. My little boy, Carter, was not quite 2-and-a-half. He was a typical little boy, meeting milestones on time and trying to keep up with his big brother, Mason. His white blonde hair was just starting to grow and he hadn’t yet had his first haircut.
I will never forget the first Sunday afternoon that Carter vomited. He came running towards me and spewed vomit all over my newly mopped floors. What was so odd was that he seemed fine immediately afterwards. He didn’t vomit again the rest of the day so I brushed it off.
But the next morning, it happened again. This time I immediately thought it was because of an antibiotic he was on for an ear infection or from the steroid he had just finished from having croup.
I consulted with the pediatrician. We switched antibiotics, we took him off antibiotics, we put him on reflux medicine, we took him off reflux medicine. But each and every morning, Carter would vomit just once and then seem to be better (although lethargic). He didn’t have a fever. He didn’t complain of his head hurting. Nothing.
After Carter vomited nine out of ten days, I had enough and requested further tests. Thank goodness our pediatrician listened. She admitted him to the hospital where he could be watched. While I tried to convince them he needed an MRI, they looked at me like I was a monster for wanting one.
In the meantime, my baby stopped talking and eating, yet the vomiting increased. Eventually they conceded and did an upper G/I where it determined that something neurological was going on because his stomach wasn’t emptying. An MRI confirmed our worst fears: An astrocytoma brain tumor.
Over the next month we learned the tumor was malignant and inoperable – two deemed curse words in the pediatric brain tumor community. We were invited to St. Jude Children's Research Hospital in Memphis to take part in a chemotherapy protocol. So, Carter and I packed our bags and boarded a plane to Memphis.
During this time, it became apparent that our little boy was wise beyond his years. He had a way of connecting with people, of giving them hope, and sharing his passion for life. We called this magic about him, his ‘pixie dust.’ Special things happened when Carter was around. He charmed his way into the hearts of his nurses and doctors and perfect strangers.
Sadly, the initial protocol that Carter was on at St. Jude didn’t work. In early 2012, just three months after his diagnosis, St. Jude ended up customizing a chemotherapy regimen for Carter.
That, too, didn’t work.
We were at Disney World when it was discovered that Carter’s tumor had grown exponentially. It was huge.
Carter and I took an air ambulance back to St. Jude where I was given a choice -- head home and put Carter on Hospice, or try radiation. It is extremely unusual for children under the age of 3 to do full cranial radiation, but I couldn’t stop fighting for my little boy.
If he was going to die from this awful thing in his head, then I had to do everything I could to fight it.
Carter did 24 full cranial radiation treatments. He started to thrive. He didn’t act like a little boy barely 3 years old, but more like a 5-or-6-year-old. He looked forward to his radiation treatments where he could go through the “magic door” and take sleepy juice, only to wake up to “Carter Cookies” in the recovery room.
We went home for the summer. He played with his big brother. Our lives looked somewhat normal from the outside.
On June 19th it was deemed that the tumor was smaller than when diagnosed. But in late July I noticed that Carter’s belly didn’t look right. It was bloated and hard. I took him to his local doctors at Levine Children's where they re-routed his shunt and then determined they needed to drain his stomach. They were able to drain 8.5L of fluid off of his belly (I can’t look at 2L bottles in the same way any more).
It wasn’t long after we were told the tumor had taken residence in his stomach – something that happens less than 2% of the time.
It was then I realized Carter was going to head home to heaven.
I prayed and prayed that if God was going to take my child, He do it quickly.
‘Please,’ I begged Him. ‘Show my baby mercy.’
That was August 9th, 2012.
In the early morning hours of August 13th, Carter went to play with the Angels who had surrounded his bedside just a night before. He told us about them. When he did that, we told him it was time for him to go.
A life does not have to be long to have purpose or impact. We have chosen to celebrate Carter’s life with joy and pixie dust, each and every day. It hasn’t always been easy – the first two years after his death were dark and awful. But that isn’t how Carter lived and that isn’t how he would want us live without him.
Pediatric cancer is awful. It isn’t a journey I would wish on anyone. I have images etched in my mind, including the night Carter left us here. Danny Thomas said, “No child should die in the dawn of life,” and I believe that having lost my own son.
It is my hope Carter taught the doctors who treated him, something to help the next child and to help them live.
I give back to perpetuate Carter’s memory and help the next parent who hears the words, ‘Your child has cancer.’ I never thought those would be words I’d hear, yet, I did.
For the past six years we have funded a blanket ministry at St. Jude through Binkeez for Comfort. This initiative has grown each year. We are also funding a $150k naming opportunity at St. Jude that overlooks a sequin park mural.
People sometimes ask how I’m able to do all this. I do it through pixie dust. Carter moves me forward. I started walking/fundraising for the St. Jude Memphis Marathon – now, years later, I run them. I do the same for the St. Jude Rock n’ Roll Nashville Marathon Weekend. I had never run (or walked!) an event until the spring after Carter’s death. That is all pixie dust!
I also sell Rodan + Fields skincare and donate all my commissions to these legacy programs. I published Carter’s full story, and I donate the proceeds from these sales, too. Most importantly, I have been blessed by donations from friends, family, and strangers to help in my fundraising for the runs. I'll put links at the bottom of my note to all those things.
I call the love and good that comes out, pixie dust.
Carter may have died seven years ago, but he isn’t gone in our eyes. He lives through us and around us each and every day. He is the dragonfly that shows up unexpectedly. He is the stranger who pays for your Bojangle’s breakfast when you’re frustrated and running late. He is the ((HUG!!)) when you need it most.
Thank you all for reading this story. Thank you for caring enough about my son, and the many, many children and families you meet and read about through #MollysKids going through the same thing.
Book link: https://tinyurl.com/SarahsBookMKs
R+F site: bucciero.myrandf.com
Fundraising site (December run): http://heroes.stjude.org/dragonfly
**NOTE**: These 30 September #MollysKids stories highlight REAL kids in our community who battle. The stories are meant to be shared and educate, as they have every September since 2013. This year, I also encourage you to comment below with a message. Not to me. Please don’t write me. Write the family. Say something to Sarah -- she just opened herself up to all of us. She'll read your words. She won’t think you’re a stranger. You'll represent support. The Good, the Bad and the Always Real. Right? Every post. Every day. Thank you.
*Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.