When Colton was 2 months old, his pediatrician noticed that his head was measuring large for his age, and his fontanelle-- the soft spot on a baby's head-- was hard. The doctor told his mother, Leana, to take Colton to Children's Healthcare of Atlanta for a full evaluation.
His first appointment at Children's led to a series of tests, after which Colton was diagnosed with an immature teratoma, a rapidly growing cancerous tumor in his brain. Colton was so small that his doctors couldn't perform surgery right away, so they treated him with chemotherapy to shrink the tumor until he was big enough for surgeons to successfully perform the operation.
Colton spent weeklong stints in the Pediatric Intensive Care Unit (PICU) at Children's, where they managed his chemo and its side effects. He had a shunt put in his head to relieve swelling and drain the fluid that was accumulating around his brain, but it couldn't drain fast enough. His doctor replaced the shunt with an Ommaya reservoir, a device that helps drain the fluid more easily.
After weeks of treatment, Colton's doctors discovered the tumor was not shrinking. At only 5 months old, Colton was still too small for the surgery he needed to be successful, so his doctors decided to bring in the Pediatric Advanced Care Team (PACT). PACT is Children's palliative care team and they help patients and families deal with the stress and symptoms of serious illness.
"We were very overwhelmed-- I still couldn't believe Colton had been diagnosed with a brain tumor," Leana said. "PACT came in and explained what they do for families and how they could be of help, and asked if there was any assistance that we needed from a family standpoint or any support for Colton that would help make him comfortable. We became close friends because they were in and out every day."
At 6 months old, Colton was finally able to have surgery to remove a portion of the tumor. Throughout the procedure, during which doctors removed 1.4 pounds of the tumor, PACT was there for the family as they waited.
"They did everything they could to make Colton comfortable to get him to the point that we had to do surgery," Leana said. "It's not something you want to hear when they come in, but I realize now that they were there for support."
After surgery, Colton's family learned that the chemo treatments had changed the tumor from malignant to benign. They did two more rounds of chemo to be safe, and then they let Colton grow bigger and stronger before doing a second surgery to remove the rest of the tumor. Colton's condition improved so much that he was able to celebrate his first birthday at home with family.
When Colton was 13 months old, he had another surgery to remove the remainder of the tumor. During the procedure, doctors took out a mass approximately the size of an apple. Leana saw immediate changes in her son: His right hand, which had always been tight and drawn up, released and opened up after the surgery.
Now, with ongoing physical therapy and care from the doctors and Children's, Colton is eating mostly on his own, playing with toys and learning to say a few words.
"He says 'Mama' all the time," Leana said. "He's doing great-- a lot better than where we were. He missed out on a lot of what a baby does, but we're catching up."