Some legacies are measured not by how long someone was here, but by the lives they continue to touch.
Raines was a very happy, adventurous and incredibly intelligent child. He died two months and two days shy of his second birthday, and much of his life was spent at the hospital.
He loved Edenton, the beach, the Durham Ronald McDonald House and Duke Gardens. His best friend was his sister, Reid. His favorite songs were “If You’re Happy and You Know It” and “The Wheels on the Bus.” When he grew up, he wanted to be a mail truck.
Near the end of his life, every morning he would walk outside and say, “It’s a beautiful day.”
Raines also changed the children’s hospital at Duke. He enjoyed drawing pictures for other patients and delivering them like mail. Now, on the stem cell transplant floor, all rooms have a “mailbox,” and there is one at the clinic as well, so patients can keep in touch with each other.
Raines changed the world even though his life was remarkably short. One of the most profound lessons Raines taught me was to practice gratitude religiously and to appreciate all the little blessings of everyday life.
He was also tough as nails. He endured shots in his eyes, countless chemotherapy drugs, more than 60 surgeries and a stem cell transplant. In his final act of love for life and mankind, he donated his brain, eyes, spine, spinal fluid, blood and a skin tissue sample that are now available to researchers around the world.
Raines was born with a spontaneous genetic mutation commonly called RB1. It caused him to have bilateral retinoblastoma, which is essentially cancer in the globes of both eyes.
About 300 to 350 cases of retinoblastoma are diagnosed each year in the United States. Retinoblastoma accounts for approximately 3% of childhood cancer cases. There is a 96% survival rate for retinoblastoma patients to the age of 15, and nine out of 10 patients are cured.
Unfortunately, because the treatments involve chemotherapy, these patients often develop secondary cancers later in life, and their life spans can be shorter than normal. For many patients, it also affects their vision. Raines was blind in his right eye.
Raines’ retinoblastoma, however, was very unique because it metastasized to his spinal fluid and caused cancerous tumors throughout his brain and spinal cord. This was incredibly rare, and I believe there are fewer than 100 recorded cases of this happening in human history.
The median life span once retinoblastoma metastasizes like this is about six months. Raines made it 10 months.
At the end, however, there was not even a clinical trial for which he qualified, so we completely exhausted all treatment options. What we found in our journey with Raines was that simply having options provided hope. When we exhausted those options, it was devastating.
His priceless donation is of little value without the funds to actually engage in the research, which is why we started Raines’ Army—to raise funds for brain, eye and spinal cancer research.
Help Continue Raines’ Legacy
On September 19, we invite you to join us for the 2nd Annual Raines’ Army Fundraiser in honor of our sweet Raines.
Pediatric brain cancer changes the lives of far too many children and families. We can’t change Raines’ story, but together, we can help change someone else’s.
Every ticket purchased is more than admission to an event—it is a promise to keep fighting, to keep remembering and to keep believing that one day no family will have to endure the heartbreak of pediatric brain cancer.
Please come, bring your family and friends, and help us fill the room with love, hope and purpose. Your support means more than words can express.
Buy your tickets today and help us continue Raines’ legacy of making a difference.
Because every child deserves a future, and every act of kindness brings us one step closer.
https://givebutter.com/.../raines-army-inc-first-annual...