“As I was coming back down the hall, a group of doctors stopped me and asked if they could speak to me in a nearby room.” Jackie Robins’ heart sank in that moment. She had no clue what they were going to tell her, but she knew it was going to be bad.
That morning she had brought her 15-year-old son Vinny into the emergency room. He had been in the month before with horrible abdominal pain and was sent home with treatment for constipation after a scan revealed nothing unusual. But this time was different, and Jackie, a nurse, knew when he told her about the vomiting.
“Mom I’m throwing up brown stuff,” he said. “Like coffee grounds?” she asked. “No, like poop.” She knew then it was a bowel obstruction and they wouldn’t be leaving the hospital as quickly this time.
A scan that same day would show a 6cm mass on the ascending side of Vinny’s colon. The colonoscopy and further tests on March 1, 2019, would confirm that her teenage son had colon cancer. With four out of 38 lymph nodes removed during surgery testing positive for cancer, Vinny was given a stage III diagnosis. What was most shocking was that the 6cm mass found in February had not been present on the abdominal scan they had done only a month earlier when he came in complaining of pain.
Though Vinny wasn’t admitted for his treatments, he spent plenty of time at Texas Children’s Hospital. He worked with a Child Life Specialist who not only told him about his diagnosis, but used props and videos to explain surgery, the placement of a port, and what Vinny could expect to experience from his chemotherapy regime. As a teen, Vinny struggled in what seemed like a world catered to children. He didn’t care for the people that would pop into his room in costumes with baskets of crayons or toys, and despite having programs that were geared for teens, he just wasn’t interested in doing them.
According to St. Jude Children’s Research Hospital, childhood colorectal carcinoma is rare. Fewer than 100 children in the U.S. under the age of 20 are diagnosed each year. That is about one in a million.
He couldn’t even be enticed to attend Camp Periwinkle, a camp for children with cancer and their siblings hosted by Texas Children’s Cancer and Hematology Centers. That was until they told him that teens had their own camp and their own activities. Vinny signed up and brought his twin brother Eli along for what would be a life changing week. “Normally when I pick the boys up, they get in the car and get right on their phones. But with this camp, they got in the car and talked about it for the whole hour ride home.” The week at camp inspired Vinny to use his experience with cancer to give back, volunteer, and help other kids as only someone like himself could do.
During Vinny’s treatment Jackie was able to take family medical leave and used paid time off to lessen the financial burden. Fortunately, work as a legal nurse consultant offered flexibility to work around Vinny’s schedule and the ability to bring in some income. She devoted every moment to his care while her husband continued to work full time at a job that kept him out of town. “He was able to take time off during the worst days, but the stress and strain was intense.” With her husband having no choice but to continue working to ensure a steady income for the family, Jackie was left as the soul caregiver for Vinny, and the only one working to keep home life as routine as possible for his brother.
“I know there are parents that must continue to work full time and I can’t imagine. That’s what makes childhood cancer so horrible, when you’re not in a situation where a parent can be home with the child.” Jackie met many parents struggling as they stayed home with younger children, who didn’t have the luxury of time off work, or who lived so far out of town that making daily trips to visit their child wasn’t an option.
But even with the time available to devote to Vinny, Jackie still saw the disruption it was causing the rest of the family. With Jackie looking after Vinny full time, sacrifices from the entire family were required – creating a trickle down of stress and concern for everyone. She wasn’t available to help out with her three grandkids as much as usual and her older sons had to make adjustments. “I loved being able to help my older kids and look after my grandkids, but suddenly I wasn’t available – especially if the grandkids were sick because I was taking care of an immunosuppressed child at home.”
Fortunately, treatment for stage III colon cancer wrapped up this summer. Vinny was able to finish the 9th grade on time and keep up with his friends who would frequently come over to hangout. He started the 10th grade this fall, and aside from missing a week to have a 3mm benign nodule removed from this lung, everything is back to normal – at least as normal as it can be after facing cancer as a teen. He still faces scans and bloodwork every three months. Unfortunately, peace of mind is hard to find for his parents, because there are no guidelines for surveillance of colorectal cancer in pediatric patients.
This experience has changed Jackie and Vinny alike and given them both a passion for advocacy and awareness they couldn’t have expected when they walked into the emergency room on February 25. Jackie already sees herself cutting back at work in the future so she can spend more time sharing their story and volunteering. Vinny is ready to volunteer next summer at Camp Periwinkle. An impressive young man, he’s eager to share his story so that other young people, teens included, can know that colorectal cancer can happen to them.
Jackie’s message to other parents and young people is that teens need to be included in messaging about young onset colorectal cancer. Parents need to understand the importance of open communication with their children about their bodies, and children need to know that there is no reason to be embarrassed about anything unusual they may be experiencing.
After the official diagnosis on March 1 with stage III colon cancer, Vinny decided to search for more information about colorectal cancer awareness. He was excited to see the awareness color was blue – his favorite. But more significant, March was Colorectal Cancer Awareness Month. It brought that much more meaning to that fateful day he was diagnosed – the start of a month that has come to have such significance for him and his family.
The Colon Cancer Coalition is incredibly honored to have Jackie and Vinny sharing their story at Get Your Rear in Gear – Houston on Saturday, November 16.