Ben Longale, 7, after two transplants and a battle with cancer – finally, is in the clear

The Enterprise – Sean Mulkerrin
Nestled nicely: Seven-year-old Ben Longdale peeks out from his portable tree house, located in the recently completed backyard family oasis. The project was spearheaded by the Maddie’s Mark Foundation.

VOORHEESVILLE – Andrea Longale describes her son, Ben, as an old soul.

I smile and laugh in agreement as I listen to Ben, just 7 years old, casually, candidly, and confidently recall his most recent surgery — his tonsils were removed in April — like a retiree who’s just moved to Boca.

That may explain why a 7-year-old chose as his wish a backyard makeover. It’s astonishing that someone so young, so spirited has experienced so much in so little time.

It’s why Friday, July 6, was Ben’s “Best Day Ever.”

Ben and his family came home that day from Saratoga to find the previously barren land behind their home had been replaced with a backyard family oasis, replete with a patio and pergola, new sod and plantings, a privacy fence, and a fire pit with the requisite Adirondack chairs — all courtesy of the Maddie’s Mark Foundation, of Guilderland; Orsini Landscaping, of Schenectady; Dagostino Building Blocks, of Schenectady; and Alliance Designer Products, of Quebec, Canada.

The Maddie’s Mark Foundation was started by Erin and Matthew Musto in honor of their daughter, Madeline, who was only 5 when she was diagnosed with an inoperable brain stem tumor. She died five days after the diagnosis.

It’s mission “is to spread Madeline’s spirit by providing opportunities, creating environments, and enabling children and families to live a life of ‘best days ever.’”

Maddie’s Mark provides children suffering from major illness with their “best day ever,” an opportunity for a family “to see something, visit someone or go somewhere with their child that may not be possible without our help.”

Erin Musto said that she wanted to do something to increase the Longales’ enjoyment in their own space because Ben’s health may have made it difficult to plan travel.

An indomitable spirit

When they are born, most babies have some yellowing of the skin, known as newborn jaundice. It’s often most noticeable when a baby is two to four days old. Most of the time, according to the National Institutes of Health, it goes away within two weeks.

Andrea Longale said that when doctors at Albany Medical Center tested Ben for newborn jaundice, they found that something wasn’t right. He was three days old. She said it took another couple of days of scans and imaging to get a firm diagnosis.

Ben was diagnosed with biliary atresia, a rare disease of the liver and bile ducts.

The liver produces bile, which helps to digest fat and carry waste from the liver to the intestines.

When a newborn has biliary atresia, bile cannot flow from the liver to the gallbladder; it’s blocked. The bile becomes trapped inside the liver and quickly causes damage and scarring of its cells, known as cirrhosis. Eventually, this leads to liver failure.

After the diagnosis, Ben was sent home with his family. It was Easter weekend, and the surgeon who could perform the surgery wasn’t available. Ben had surgery the next week and spent another week in the hospital, recovering.

Mrs. Longale said that she and her husband, Nathaniel, were very grateful to Albany Medical Center because Ben had been diagnosed so quickly, and, because of Ben’s surgeon, who knew that she had reached the limits of her ability and told the Longales that Ben needed a specialist.

“That is the best kind of doctor you can have,” Mrs. Longale said, someone who tells you that your child needs more help than they can provide.

Mrs. Longale said that Ben’s surgeon called Children’s Hospital in Boston for help, and the next day the Longales got a call from Children’s.

Ben was put on the transplant list on Oct. 3, his grandmother’s birthday. He was five months old; a month later, he received a new liver.

In November 2014, when he was three-and-a-half years old, Ben was diagnosed with a rare form of cancer, post-transplant lymphoproliferative disorder (PTLD), a type of lymphoma that can develop in people who have had a transplant because their immune system has been suppressed, Mrs. Longale said.

For the next six months, with a few exceptions, Ben was in Boston for chemotherapy. “It’s an aggressive form of cancer,” Mrs. Longale said of PTLD, but it responds to treatment.

A pregnant Mrs. Longale and her husband, thanks to the Family Medical Leave Act, stayed with Ben. Their daughter, Isabella, was looked after by her grandmother.

Ben was always in high spirits, his mother said, which was astounding because he was getting chemotherapy in his spine, about 10 treatments. Mrs. Longale said that the doctors would knock Ben out, perform the procedure, and, within a couple of hours of waking, he would be running up and down the halls.

“It was incredible,” Mrs. Longale said.

I asked if the Longdales told Ben what was happening to him.

Mr. Longale said they did, “as much as he could understand for his age.”

Mrs. Longale said that the hospital would give them information so that they could describe to Ben what chemotherapy was: that he would feel sick but then he would feel better. Social workers, Mrs. Longale said, explained how to approach a complex and delicate subject “gracefully.”

I asked if Ben had been able to convey that he was in pain. “Yes,” his parents said. “He has always been very articulate.”

Mrs. Longale said that the oncology unit at Boston Children’s Hospital does an incredible job of amusing and diverting kids’ attention, with huge playrooms, movies, and ice cream sundaes. “Just things to distract families,” she said.

 

The Enterprise – Sean Mulkerrin
Brothers: Ben Longale, 7, left, and his brother, Nick, 3, share an afternoon snack in their newly redone backyard. 

 

Precocious pastimes

Ben then interrupted the conversation, held in his transformed backyard, to show me a daddy-longlegs.

“Look, Sean is also a bug guy,” Mrs. Longale said to her son.

“I just don’t want to look scared in front of a 7-year-old,” I responded.

Ben then told me that a daddy-longlegs is not a spider. A spider has two body segments; a daddy-longlegs has one.

His favorite spider is the black widow. He said that his sister saw one — but it was in a cage at a museum. He once spotted a spider that, he said, looked like a black widow; it was near the sandbox in his backyard. “But that was, like, years ago,” said the old soul.

Illustrating her own knowledge, Mrs. Longale said that there were black widows in New York, in the Adirondacks. Ben was quick to confirm her statement: “That’s true,” he said.

Ben’s also a bit of a geography buff, his mother said.

I asked him the capital of New York. He quickly answered: “Albany.”

Massachusetts? “Boston,” he exclaimed.

Mrs. Longale asked, “Florida?” He answered: “Tallahassee.”

“Kansas?” his mother asked. “Topeka,” he told her.

Ben asked his mother to ask him the capital of Oklahoma, she did. “Oklahoma City,” he said. “That’s the easiest.”

I asked the Longales what the days in the hospital were like, was Ben resigned to a bed? “It was a little bit of both,” Mrs. Longale replied. “He was down quite a bit.”

He was in isolation for a while because he had a lot of infections. When that happened, Mrs. Longale said, the staff went out of their way to help. They would bring Ben Play-Doh, she said, “really anything they could find for him to do.”

Boston had been going through one of its worst winters in decades; three major snowstorms in short order paralyzed the city. Ben’s room faced Longwood Avenue, his mother said, and he would sit at the window all day and watch as the
skid-steer loaders pushed the snow over steam grates to melt it.

Before the snow, the family could go to a garden that was on their floor of the hospital, like a courtyard or atrium, Mr. Longale said.

I asked the Longales about being in and out of the hospital for weeks and then months on end. Were they frustrated; were they angry with Ben’s doctors, nurses, the hospital?

No.

Mr. Longale said that the doctors and staff were excellent and that, even though every moment was stressful, everyone was very positive. “They did everything they could do for Ben, and he’s still here,” Mrs. Longale said.

Long haul

Ben completed chemotherapy in April 2015, but the cancer had destroyed his transplanted liver, and, soon after, for the second time in his young life, he found himself on a transplant list.

When someone’s liver isn’t working properly, his body can’t absorb the vitamins its taking in. Mrs. Longale said that, after Ben completed chemotherapy and before his second transplant, his bones were so weak from vitamin deficiency that he broke both of his legs. The breaks happened five months apart.

Ben went into his second transplant surgery, in November 2016, with a cast on his leg, and, his mother said, it had to be taken off during surgery out of fear of swelling.

Mrs. Longale estimated Ben’s medical costs to be somewhere around $4 million to $5 million. The first transplant was around $900,000; the second about $750,000; chemotherapy treatment cost nearly a million dollars; and then there were all of the tests, and appointments, and follow-ups.   

I asked the Longales if they had maxed out their insurance. Mrs. Longale said they hadn’t, that Mr. Longale, a union electrician for CSX, has good insurance; there was no lifetime cap, she said.

It has been about a year-and-a-half since Ben’s second transplant, and three years since he finished chemotherapy. He’s out of the woods.

I asked the Longales what that’s like.

Ben is better, but is it constantly in the back of their minds that —

Mr. Longale finished my thought: “That things could change in an instant?” he asked. “Yes, we think about that a lot.”

But, Mrs. Longale said, they also look at the statistics; children who get liver transplants do great and have minimal complications. Ben has not rejected his second transplant.

For Ben, this summer is already better than last summer, his mother said, when he was a more run-down and sensitive to heat. The major thing with Ben, Mrs. Longale said, is his medications; they can be toxic, so he has to keep very hydrated. “We do have to be super cautious about that when the weather is warm,” Mrs. Longale said.

Ben will be a first-grader in the fall. He likes to play soccer, his mother said; Ben said he likes recess. Mrs. Longale said that Ben and his friend who lives next door, Griffin, like to play in the creek behind the Longdales’ house. Ben said they had done so just the day before.

His favorite television show is called “Summer Camp Island.” It’s only on during the weekend but, he said, he knows how to find it on demand.

Sitting on her new patio, Mrs. Longale summarized her experience: “It’s been amazing to have such a serene space. There are good people in the world and we have been blessed by many of them.”

With the timing of a Swiss watch, Ben — almost as if he were following stage direction — told his mother: “And there’s bad people in the world too.”

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