I wrote a story last May about Cole and his Clemson family. Cole, a rambunctious two-year old with a beaming smile and loving spirit, had been diagnosed with neuroblastoma, rare cancer that develops in the sympathetic nervous system, a network of nerves that carries messages from the brain throughout the body. About 700 children are diagnosed every year in the United States. Neuroblastoma is the cancer most often found in infants.
The disease forms as solid tumors — lumps or masses — in the adrenal glands, abdomen, neck, chest, or pelvis. The tumors can also spread to other parts of the body such as the bones and bone marrow.
Although research is intensive and ongoing, we don’t yet know what causes neuroblastoma. Most doctors and scientists believe it’s an accidental growth that occurs during the development of the sympathetic nervous system.
I wrote this last year about the family:
Clinton and Erin Henderson of Greenville are Clemson graduates who met and fell in love with the hopes of starting their own family. The couple lived across from each other in Calhoun Courts during their time at Clemson and shared the same major. They met in 2006 and walked to Godfrey Hall for their Graphics class for an entire year without knowing each other.
It didn’t take long for romance to blossom.
Clinton graduated in 2007 and Erin earned her diploma a year later and she followed him to Greenville after she graduated. He proposed on her first day of work (May 19) in 2008 and they married on May 23rd in 2009. Their dreams of starting a family came true in 2014 when Daniel was born (he will be six in October). Four years later, Cole was born on April 10, 2018 and the happy trio became a loving quartet.
Last year, however, they learned Cole’s diagnosis.
As Erin says, he can be “rough” so she wasn’t especially worried when she noticed that Cole had a black eye. Cole had been staying with his grandparents so his parents could work during the quarantine. No one could remember him falling, however, and when the bruise didn’t go away they rushed him to the pediatrician.
Blood work followed and Cole was admitted to the hospital. Scans on a Friday showed that there was a mass in his sinus and a large tumor in his abdomen. He had surgery the following Monday for the biopsy of the tumor and mass, and the results showed that Cole had Stage 4 Neuroblastoma.
Over much of the past year, the family has spent time in the hospital as Cole has undergrown treatments. His beautiful, thick, brown hair fell out due to chemo, but his gorgeous smile and his fight never diminished. There were good days and bad days, successes and bumps in the road. I told Clint that as a nightowl, if he ever needed to just talk to someone while he was dealing with Cole, I would be there. We’ve had many late night text conversations and our friendship has grown.
I took delight as each milestone was passed, and on February 9th Cole “rang the bell” as he checked radiation off his treatment plan. This time last week, the Hendersons were preparing for a trip to Charleston for more scans when Cole showed signs of not feeling well, including a large bump on his head and difficulty breathing. The news was not what any of us wanted to hear – there was a tumor behind the bump, and the cancer had spread into his little lungs. I have doctors in my family, and during a conversation last week I was told that neuroblastoma is “unflinching” in its attack on little bodies.
At that point, the family had a tough decision to make, and I’ll let Clint take it from here. He wrote this (very eloquently) in Cole’s Caring Bridge entry:
Cole gained his wings at 1AM this morning.
I write constantly for work. Emails, notes, proposals, and more. Using words and being a "storyteller" have been some of my favorite parts of life. However, those words above are the hardest I have ever written. This next chapter in our life will be the hardest ever written. But I owe it to Cole to tell his story.
As mentioned in our last post, Cole's cancer not only relapsed (in an original spot) but also spread to a new area, his lungs. His cancer, neuroblastoma, is a cold disease. We were warned during initial diagnosis last April that Cole's odds for survival were roughly 50/50. We were also warned that this type of cancer had about a 50% history of relapsing and that relapse is harder to treat.
We made the decision Thursday afternoon to fight and give Cole a chance. So Thursday night, he received two doses of chemotherapy and the plan was to continue doing that regimen for another 4-5 days. The outlook was tough and extremely uphill as the lungs were heavy with disease, but there was a chance. Cole had already been on a ventilator since the biopsy surgery Wednesday but late Thursday, going into Friday morning his lungs were beginning to struggle to keep up. The team fought like hell with the ventilator all night and into the early morning hours and eventually moved him to a more powerful machine called an oscillator. However, a chest x-ray early Friday morning confirmed the reason for his struggle. The cancer was extremely aggressive and had taken over most, if not almost all of his lungs. I could see the looks on the faces of the doctors and nurses as they tried to stabilize our boy...this was not going to end the way we wanted.
We had a hard conversation with our team later that morning. Cole's sweet oncologist confirmed there was no need to continue chemotherapy. The words were hard to hear and just as hard for her to say. However, everyone agreed we were not going to let Cole suffer nor prolong his fight once the outcome was clear. The amazing team sat, talked and cried right beside us as we discussed the next steps. We wanted our boy, our Cole Bear to be at peace and not suffer. The plan was made and Erin and I spent the rest of the day sitting beside and loving on Cole. As the time drew near, Erin and I played his favorite songs and gave him a bath so he would know he was loved. We followed the bath with lotion. As Erin was holding his hand and rubbing the lotion in his arm, he gave her finger a quick and soft squeeze. We pray that was Cole giving Erin a little bit of peace, saying "I'm okay mama". After that, we laid with him a little longer and finally gave the approval to the team. The room was filled with people who truly loved Cole. Erin and I set up in the bed and the team disconnected Cole so we could hold, love and rock our sweet boy to heaven. We played his song "See A Victory", know in our house and to Cole as "The Cole Song", as we held him so he would know he had won. Cole saw that victory a few minutes later.
Thank you for caring to read our son's story. Thank you for loving him and us. Let Cole's story be an inspiration to you today and every day. Do not be of this world, be like Cole.
(To visit his CaringBridge page, you can visit it here.)
I started to write that Cole had gained his wings, but that didn’t seem right. Cole “earned” his wings with his incredible fight. When Clint texted me that they sat in the hospital bed with their little one and “loved him into heaven,” I cried. I am not ashamed to admit it. I don’t understand why our babies have to suffer, and I don’t like to see my friends hurting. Cole woke up in a better place than this old world, leaving the rest of us to try and make sense of his passing.
And for some good to come out of it. As Clint said, he told God that if He had to take Cole, “make Cole the inspiration for many people to come to You.”
Cole inspired so many people in life, people who never met him or his family, and he will continue to inspire people with the message of his journey. He fought like a Tiger, and he EARNED those wings. Fly high, little buddy. You will be missed.
