Seated on mother Julie Barbeau’s lap, 3½ year old Ryan Costa is as wriggly as any toddler. He eagerly nibbles on cheese crackers, a smile stretching from one chubby cheek to the other. His mother knows, though, that beneath Ryan’s seemingly healthy appearance, cancer cells course through the little boy’s bloodstream. His daily life, and that of his parents, Ms Barbeau and Gary Costa, is a regimen of chemotherapy, quarterly spinal taps, and steroids.

Pediatric cancer can change a family’s life overnight, said Ms Barbeau. Less than a year ago, Ryan was an active, on-the-go child. He enjoyed the days he spent at Little Explorers Childcare in Sandy Hook, and play dates with his friends. Other than a speech issue, for which he was receiving therapy through the Birth-to-Three State of Connecticut program, his parents had no real concerns about Ryan, the fifth child in the family.

On July 10, 2014, when Ms Barbeau picked him up from Little Explorers, the teachers mentioned that Ryan’s speech therapist had noticed Ryan seemed unwell. He was not running a temperature, and other than seeming unusually quiet, they did not feel a need to send him home for the day. Ms Barbeau felt that her son seemed oddly pale, though, and made an appointment for a check-up the following day.

“Everything checked out fine,” Ms Barbeau recalled, except for the finger prick. “The finger prick showed his blood count had dropped from 12 to 4 in just seven months,” she said. The doctor told her to take Ryan to Yale-New Haven Children’s Hospital for further testing —immediately.

“The doctors there did more blood work, and that night they had a diagnosis of leukemia,” she said, and the start of an 11-day stay at the hospital for blood transfusions and the start of treatment.

“The nurse asked me if I worked, and I said I was a stay at home mom; to which she replied, ‘Good.’ It has been a full-time job,” Ms Barbeau said.

Ryan was diagnosed with Pre-B Acute Lymphoblastic Leukemia (ALL).

“The good news, the doctors told us, is that this leukemia is very common in boys, and very treatable. The best thing about it, is that because Ryan is so young, he probably won’t remember a lot of it as he gets older,” she said.

Girls and adults also are subject to Pre-B ALL, but treatments differ. For Ryan, it means chemotherapy delivered through a port placed beneath his skin, oral chemotherapy each night, spinal taps every three months, and five days each month of steroids. It is difficult, and the family appreciates the compassion of the doctors and nurses they encounter.

“The diagnosis changed our lives,” said Ms Barbeau. The focus at home was on Ryan and his health, and with her three oldest working, their lives did not allow much time to give Ms Barbeau relief. Mr Costa has his own landscaping business, “and Gary is our breadwinner, so he had to keep on working. I felt the worst for our 13-year-old, but he did okay,” she said.

“The first eight months of treatment, Ryan couldn’t go anywhere, because his immune system was so suppressed,” said Ms Barbeau. He was not allowed to go out to stores, to school, or to church. The only play dates he could have had to take place outdoors. “And this winter, who wanted to play outside? It was very traumatic for all of us. Gary and I planned our lives around each other, so that someone was always with Ryan,” Ms Barbeau said.

Just before Christmas, Ryan suffered side effects from a medication. Pain radiated through his feet, making it impossible for him to walk. “So he figured out he could crawl, and he crawled around. It was a few weeks,” she said, “before he could walk again.” The potential that there may be long-term side effects haunts her.

She is grateful to members of Newtown United Methodist Church for the support they offered during this stressful time. The main connections to the outside world, though, were through social media.

Get Well Wishes

Ms Barbeau still tears up when she thinks of the thousands of get well wishes, from around the world, that Ryan received on his Facebook page, Rallying for Ryan. “I belong to a Facebook group, ‘November Mommies 2011,’ and I got more well wishes there. That was important support for me,” she said.

What has really changed their lives since last July, said Ms Barbeau, is their dedication to the Leukemia and Lymphoma Society (LLS), and her desire to let other parents know how swiftly their lives can be altered by pediatric cancer.

“When Ryan was in the hospital, people asked what they could do for us, and we really didn’t know. But one of our friends started a GoFundMe campaign, to raise money for our costs,” she said. It was an incredibly wonderful gesture, but insurance was covering expenses. “Gary suggested we donate to Out of the Darkness, the suicide awareness group,” said Ms Barbeau. The family had walked to raise money for this organization in the past, having been personally affected by suicide. She was online when she came across LLS, “and we became very involved.”

The spinal taps Ryan undergoes are to ensure there are no cancer cells in the spinal fluid that could spread to his brain. A small amount of extra blood is also taken for research to find a cure for Pre-B ALL.

“We said yes to the research. It could help the next person, or it could find a way to help Ryan get better, sooner. We need to find a cure,” Ms Barbeau said.

When March 2015 rolled around, Ryan was given the okay to mingle with others again. He attends the preschool at Newtown High School two days of the week, he goes on errands with his mom, and goes for rides (“In the white truck,” said Ryan) when his father goes on jobs. Best of all, he can have friends over to the house to play.

Team Ryan

Last September, the family walked to support LLS at the 2014 Light the Night event at Fairfield Hills. Team Ryan raised over $5,000. This year, the family has set a goal of raising $8,000 for LLS.

“We did a T-shirt fundraiser for Team Ryan, and raised $217. We have canisters at a number of businesses in Sandy Hook Center, and Ryan and I go collect it each month. Right now, we have raised over $1,000, and a lot of his ralliers [who know Ryan through his Facebook page] also collect change and donate to LLS. All of the money we raise goes to LLS,” Ms Barbeau said.

Katrina Cucolo, a contact she made through Newtown United Methodist, raised $30 for LLS through a can collection at Green Chimneys in Brewster, where she works.

Ryan’s family is excited about Rallying For Ryan, a June 28 fundraiser that has been arranged by Sandy Hook resident Maureen Pendergast and her friend, Suzie Kanyik.

“They put a canister at TQ Deli in Brewster [N.Y.], and now the owner is sponsoring this event,” said Ms Barbeau.

The TQ Deli is located at 1014 Route 22, Brewster. Rallying for Ryan will run from 11 am to 1 pm, and along with enjoying a bouncy house, cotton candy, and refreshment, supporters can make a pledge for how many feet strongman Steve Extance can pull a truck — with his teeth. All money raised from pledges will benefit LLS.

On July 15, Chili’s at 81 Newtown Road (Route 6) in Danbury is hosting a Team Ryan Night.

“Chili’s will donate 10 percent of the bill to Team Ryan, supporting LLS,” said Ms Barbeau. Diners will need to present a coupon in order for Team Ryan to receive credit. To get a coupon, contact Ms Barbeau at www.Facebook.com/rallyingforryan (closed group), after July 1.

Life has slowly been returning to normal for Ryan’s family, although he is still not the lively boy he was a year ago. “His prognosis is very good. He is doing well, and responding to treatment, but he still has to be very careful not to contract any viruses,” said Ms Barbeau.

This fall, the Fairfield County Light The Night will take place October 17, in Stamford. Ms Barbeau and Mr Costa are thrilled that Ryan has been named an Honored Hero 2015 for Fairfield County. They will be there, of course, walking the course.

What is frustrating about Pre-B ALL, Ms Barbeau said, is how quickly the cancer can strike, and that doctors do not know what causes it. If researchers can find the cause, it could mean a cure for this disease, or improved treatment.

“A lot of our life now revolves around supporting LLS. I’ve got fundraising on the brain. We need to find a cure,” she emphasized. “That’s why we walk for LLS.”