OCEANSIDE — Nine months ago, 8-year-old Coben Swanson was like any other active second-grader. Then a bout of illness revealed the life-changing diagnosis that he has leukemia.
His mom, Brittany Swanson, was first told Coben probably had the flu. After a week of bed rest and no change, she knew it was something more. There were also symptoms of easy bruising and severe aches.
“My gut told me to take him somewhere where they talk to kids,” Swanson said. “At 8 years old he could not tell me where the pain was coming from.”
Swanson took her son to Children’s Hospital of Orange County for a further checkup. Doctors did several blood tests, and then took her into a private office to deliver the bad news.
Coben’s blood tests had jumped from a 400 count to a 900 count within that day’s visit (with a normal range being a 300 to 500 count). Doctors explained Coben needed to be treated for leukemia.
Swanson then had to tell her son he would be staying at the hospital for awhile.
“I was a zombie, I pulled it together, I went back in there and explained to my son we needed to move to a different room upstairs, and it was important to cooperate,” Swanson said.
Coben’s treatment will take three and a half years of in-hospital and out-patient procedures.
Since his diagnosis he has had three chemo rounds, and four brain surgeries.
He will begin his fourth chemo round in October.
Needless to say life for Coben and his family has changed forever.
Swanson and her husband alternate the time each of them are at Coben’s side during his long hospital stays, and the time they spend with their daughter at home.
When Coben is home they try to stick to family routines, like eating dinner together.
Due to his illness the family needs to limit their time in germ-filled public places, and they are not able travel.
When they are out in public there is a sense of isolation. People are initially surprised to see Coben, who has no hair and part of his skull missing, and are hesitant to come up and say hello.
The Swansons have connected with other families going through similar experiences through the MaxLove Project and its health and cooking classes.
Swanson said her family has adopted the motto “we’re one day at a time” to help them though the challenges.
“On bad days we break down, but we keep moving forward,” Swanson said.
She said she has also found a lot of support online, by posting valid accounts of her experience. She said writing about the daily ups and downs the family faces as Coben battles cancer is cathartic, and connecting.
Swanson said she counts her blessings, but knows its a long road ahead.
“We’re extremely fortunate we caught it within a week, and got him to the right place,” Swanson said.
Swanson said her hope is to raise awareness about children’s cancer, which (according to cancer.gov) over 15,000 children are diagnosed with a year, but which is classified as rare in relation to other cancers.
Research to find out more about the disease and provide a better cure receives about 3.9 percent of cancer funding. Swanson said a motto of parents who have children with cancer is “more than 4,” to emphasis their hope that more than 4 percent of funding will go toward future research.
Swanson said there still remain a lot of unanswered questions about children’s cancer.
“They have no idea where children’s cancer comes from,” Swanson said. “It’s a rogue cell, but they don’t know what it’s on and off switch is.”
Current treatment provides a cure, but has serious side effects. Coben has already experienced muscle loss, permanent nerve damage, and will likely have future problems with his heart, liver and other vital organs due to treatment.
To help Coben get ready for his upcoming round of chemo, Swanson plans to post a photo of him on www.teamcoben.org (which will be online this month), which site viewers can print out and take with them when they travel.
The idea is for viewers to send photos of where the printed out “Coben” visited. Swanson plans to hang the photos she receives on Coben’s hospital room wall for inspiration of where he can travel one day, and to let him know people are rooting for him in his battle against cancer.