AnnaLynn Surace Williams and her family knew the pain of a sick child in the family long before AnnaLynn was diagnosed with acute myeloid leukemia almost seven years ago.
Her cousin Raquel Smith developed a seizure disorder when she was a year old and died from the condition at age 13, three years before a Lockport doctor told AnnaLynn she could die within hours from blood cancer.
The next 12 hours included a frantic car ride from Niagara County up Route 990 toward Roswell Park Cancer Institute, the first of several bouts of high-potency chemotherapy drugs that wiped out AnnaLynn’s immune system, and gasps, tears and a few shrieks as loved ones began to receive word that the 22-year-old epidemiology graduate student was in grave danger.
Family members, friends and friends of friends quickly coalesced to help the AnnaLynn and the Surace family any way they could think of. Read more about those efforts in a related story here, published this weekend in WNY Refresh.
But AnnaLynn and her family also wanted to talk about several other elements of dealing with a cancer diagnosis, treatment and support.
They wanted to share with others in similar circumstances some of the things that helped them find strength to cope and to look forward.
I recently interviewed AnnaLynn, now 29, her brother, Rocky, 25, sister Christianna DeVoe, 30 and their parents, Rocco and Debbie Surace, in the O’Connor Road home where the kids grew up and the parents remain.
The talk was punctuated at times by a father’s tears.
Rocco Surace wanted people to understand how challenging cancer and other potentially terminal illnesses can be on a family, how little things can make a big difference during a crisis, and that strangers and loved ones have the ability to make a bigger impact than they might understand under such conditions.
Rocco Surace talked about standing at his daughter’s bedside at Roswell the night she arrived. How the discourse about what was going on immediately rose well over his head while his wife, a registered nurse, brother, a pediatric dentist and sister-in-law, a pediatric nurse, talked to Roswell staff about what was going on.
“I’m lost,” he said, but still confident that others could carry the conversation to where it needed to go – and explain things later.
It was a sleepless night. The initial prognosis team at Roswell set a meeting at 10 the next morning.
“They wouldn’t leave the room until every question was answered,” Rocco said. When the medical end of things was finished, he wanted to know the bottom line: “She’s not so far gone that she doesn’t have a chance? She can get better?”
“Yes,” he was assured. “That’s true.”
“I physically felt pressure leave my body,” he said. “She stands a chance. What else can I ask for?”
Then it was down to the Roswell coffee shop and a first floor he thought felt more like a hotel lobby than a hospital. Staff smiled as they passed. A piano player added to the ambiance. And he noticed sunflowers everywhere.
With a deep breath, he explained that Raquel, his niece and godchild, lived two doors away from the Suraces. Because of her seizure disorder, she never learned to say much – but could say AnnaLynn.
The sunflower became her symbol.
Seeing them at Roswell “was her way of telling me AnnaLynn was going to be OK,” Rocco said. “I felt it.”
As AnnaLynn’s diagnosis set in, I asked, how did everybody who wanted to be helpful knew what to do?
“Everybody just did,” Rocco said. “One of the things I noticed after a couple of weeks is that the people who either had cancer themselves or who lost loved ones were the strongest silent support. They never talked about their history; they used it as support.”
AnnaLynn was forced to stay in the hospital for two extra weeks after her first two-week course of chemotherapy because her immune system had been compromised.
When she got home on Thanksgiving morning 2008, the doorbell rang and 30 people were standing outside with signs that read, “Welcome Home AnnaLynn.”
“That’s an example of people coming together just to make somebody else feel good,” she said.
The hospital confinement was followed by months of needing to stay close to home as she continued chemo and rebuilt her immunity.
Those who came to visit broke her concerns, but most importantly her boredom.
“I appreciated their support and their love, but it wasn’t until I was out of the hospital, a few months down the line, that I really realized that having cancer wasn’t such a bad thing,” she said. “While I was close with all these people before, I learned things about them I would have never otherwise learned because it was just me and them talking. We weren’t at a party. I learned things about my grandma and grandpa and my other grandparents that I might have never found out, because life’s too busy.”
AnnaLynn tends to be outgoing but advised those who have loved ones who tend to like alone time to be available in times of crisis.
“Don’t assume they want to be alone unless they say so,” she said. “It can be very hard to just have to sit home all day.”
The unofficial team that visited with AnnaLynn while she convalesced, relapsed and convalesced again gained greater strength as members started to enter running races, the Ride for Roswell and fundraisers put on the by the Leukemia and Lymphoma Society of Western and Central New York.
Some members already had seen a great example of such generosity in the actions of Raquel Smith’s younger sister, Isabella, who noticed while visiting her sister in the Women and Children’s Hospital ICU that many of the children in the unit with her sister didn’t have a support system. At 9 years old, she wrote cards for several of those children on Valentine’s Day. When she was about 13, she started her own nonprofit, Hugs to Give, which raises funds so Isabella and her friends could go to Build a Bear once a year and give out the finished products to young patients at Children’s and Roswell. She’s continued to do so the last four years, AnnaLynn said, marveling at how caring families and friends of those with serious illnesses can be when it comes to the greater good.
“I think they recognize that knowing other people care changes morale,” she said. “Everybody’s experience is different but these (chemotherapy) treatments aren’t easy. The side-effects aren’t easy psychologically and physically. So getting a bear or a blanket from a stranger can sometimes completely change the trajectory.”
AnnaLynn also is thankful for lifesaving gifts she received during treatment – and not only from Roswell staff.
Her chemotherapy killed her cancer but also wreaked havoc on her platelets and red blood cells. She needed blood transfusions. Every time she saw an orange label on a pint, she knew a member of Team AnnaLynn had been in to donate. They included her boyfriend, Mark Williams, who she married in August 2013.
AnnaLynn suffered a recurrence of cancer in early 2010 and required more treatment and a bone marrow transplant. Her siblings were not a match, and a stranger, Jessie Selvidge, from Marietta, Ga., would instead become the donor. Selvidge also attended her wedding.
AnnaLynn has been in remission for more than five years and visits Roswell every six months for follow-up testing. She has continued her doctoral studies in epidemiology at the University at Rochester and looks to conduct research that can help make cancer drugs more effective, with fewer side-effects.
“While these treatments we have today are really effective at killing cancer, they’re also effective at causing a whole lot of other things down the line like secondary cancers, heart disease, osteoporosis,” she said. “This is a really exciting time because there’s lots of targeted therapies, like monoclonal antibodies and different inhibitors coming out that are far less toxic and not cytotoxic. They’re just inhibiting a pathway. So the hope is that these new classes of drugs will have a lot less side-effects. In the meantime, we need to know what’s going on in these cancer patients.”
Team AnnaLynn has raised more than $150,000 since her diagnosis to help Roswell and the Leukemia and Lymphoma Society support families and steer research to blood cancers. They will continue to do so Sept. 25 in Delaware Park during the LLS Light the Night fundraiser. Register as part of a team or individual walker online at lightthenight.org or by calling 834-2578.
“Light the Night is great because you see all these teams and all these different support systems and they’re lucky enough to walk all together,” AnnaLynn said. “It’s very special. For people who struggle to find support system, these events are a great way to feel that you have that support system in the community, and feel supported and inspired.”
Team AnnaLynn also encourages those who want to help fight cancer to sign up at the national bone marrow registry at bethematch.org. Donating is much less complicated and painful, Rocco Surace said, and the needed is greatest among minorities.
Participation in all of these ways has meant so much to the individual members of Team AnnaLynn, said AnnaLynn’s brother, Rocky.
It helped AnnaLynn’s loved ones channel their love for her into something tangible, restoring some sense of control.
“Look what we accomplished because of what she had to go through,” he said. “This gave us something to do, something to fight for.”
Twitter: @BNrefresh, @ScottBScanlon