Relay’s 2012 Honorary Caregiver Says ‘Newtown Took Care Of Us’

By John Voket

Losing husband and dad Bob Santore to leukemia at age 42 was a devastating hit no family should ever have to face.

But Mr Santore’s wife Lorraine — and children, Geoff and Ashley — believe the immense burden they faced through the 18 months between his diagnosis and passing was lightened immensely by family and friends, along with dozens, possibly hundreds, of Newtowners they didn’t know and never met.

“Every single friend kicked in to help him survive,” recalled Lorraine Santore, who was selected from several nominees to be the 2012 Newtown Relay for Life Honorary Caregiver. “If it wasn’t for the Newtown community, I don’t think Bob would have survived 18 months. That care we got, sometimes from people we didn’t even know, gave him 18 more months with his children.”

Paying tribute to caregivers past and present, who are quietly supporting or who have supported friends and loved ones facing cancer, is a big part of the reason Ms Santore is so proud to be part of this year’s Relay, and this community.

Ms Santore remembers all too vividly how her husband received his leukemia diagnosis on son Geoff’s tenth birthday.

“At first we thought there was no treatment — that he may have had a month. His bone marrow was packed with leukemia,” Ms Santore said. But then a friend who was affiliated with Yale-New Haven Hospital got the family another consultation, and Mr Santore was admitted immediately for a high potency chemotherapy regiment.

“He went to Yale the very next day to pump poison into him to beat the cancer,” Ms Santore recalled. “Once that was done, he did 30 more days in another regiment.

“I have to admit I didn’t even know what leukemia was the day he got diagnosed. But through the entire time he spent at Yale, I never left his side — and I learned something from every doctor, nurse, and person we met who took part in his treatments.”

After four rounds of intense chemo, Mr Santore’s cancer finally went into remission around Thanksgiving. This was heartening news given Mr Santore’s initial diagnosis.

Ms Santore understands now that the immense demands of her husband’s treatments and recovery process might have driven any family to the ropes, if they did not receive the outpouring of support from so many immediate family members and friends.

“I was the least of the caregivers — hundreds of my friends carried me and the kids,” Ms Santore said.

Bone Marrow Transplant

The first thing that had to happen once the cancer in Mr Santore’s bone marrow was in remission was to complete a bone marrow transplant.

“We knew that was going to mean another month in the hospital — stronger chemo than he had ever seen. Waiting was hard, waiting for a donor,” Ms Santore said.

While helping her husband through the physical side effects and the emotional rollercoaster he was experiencing, Ms Santore often only slept two or three hours a night.

“I would stay in the hospital overnight so I could be there to meet the docs on their first rounds in the morning; then I went home to bring the kids to school; then I’d take a shower head to work. I carried all the health insurance, so I had to go to work.”

That is when the Santores’ extended family sat with Bob.

“There were also high school and college friends, his brother, his parents — he was never alone. He always had people with him.”

And once he got home, the demands heightened.

“I kept cooking because he would drop 20 or 30 pounds like nothing. And because of his weakened immune system, we were constantly sterilizing the house,” she said. “Through it all, people were bringing meals every week. The community was doing everything.

“Someone would always be sure the landscaping was done so the house would look nice when Bob came back from his treatments,” she added. “At one point we had a problem with roof, and suddenly it was fixed. Everybody was amazing.”

After his marrow transplant, Mr Santore was in remission for 8½ months.

“We were hopeful he was beating it. At Yale, they were calling him a miracle man because the disease was so advanced when he started treatments,” she said. “Then we came home one day from day clinic — after they checked his blood — and we got the lab results that the cancer was back.”

More Chemo, No Remission

This time, after yet another round of powerful chemo, the family saw no remission.

“At that point, the only other option was going in November for chemo five times stronger than ever before,” Ms Santore said. “On the day after Thanksgiving, Bob said Good-Bye, went into Yale, and he never came home.”

The Santore family spent from Christmas to New Year’s in the Intensive Care Unit at Yale as Bob’s condition worsened.

“But some of those nights were amazing,” Ms Santore recalled. “You know, you grow up as a kid and you think some day you won’t need your family to take care of you. But I don’t know what I would have done without my family and friends, especially in those last few weeks. When I was at hospital, one of my friends would break into my house to clean it. When I was driving home in the morning, another friend would talk me through the entire ride on the phone.

“It sucks he’s not here — but I’ll forever be in debt to my friends and family. And from now on I’ll always go out of my way to help strangers, because they did so much for him,” Ms Santore said.

And they are still doing it — taking her children on day trips, or just tossing a ball around.

“I’m just amazed what people make time for when I know they don’t have the time. And I can’t single out a single caregiver — because there were hundreds.”

Reflecting on the grueling but inspiring experience, Ms Santore can now speak directly to anyone who is in the early stages of what she and her children went through. And her best advice is this: Don’t let your pride stop you from taking help.

“You’re not the only one that can help,” she said. “Let Newtown, or the town you are in, swallow you up and carry you like they did for us. If I’m the caregiver, I didn’t know it because Newtown took care of us.

“This experience was our worst nightmare — but we’re still standing,” Ms Santore concluded. “So I want to do this for other people.”

Celebrating Survivors, Caregivers June 1

Newtown will celebrate local cancer survivors and caregivers ahead of the ceremonial first lap of this year’s Relay For Life. Cancer survivors — including those recently diagnosed — as well as past and current caregivers are invited to a free reception just before the kickoff of the 2012 Relay For Life on Friday, June 1.

The annual Survivors & Caregivers Reception is set for 5:30 to 6:50 pm. This year the event is moving to a new location: the back patio of Newtown Youth Academy.

Relay Survivorship Chair Lori Buchetto said this annual pre-Relay reception provides “an opportunity to come celebrate life, give hope to those currently struggling with cancer and remember those we have lost.”

Following the reception, all attendees are encouraged to join other survivors for the opening ceremony of this year’s Relay in front of NYA, and to lead all participants in the Relay’s ceremonial first lap.

Anyone planning to attend the reception and/or first lap should RSVP, survivors with a T-shirt size, to 203-563-1524 or RelayForLifeOfNewtown@gmail.com.