“I feel sad that she won’t get to have her dad the way that she deserves,” says Gracie, 29. “I’m sad that he doesn’t get to be the girl dad that he was so excited about being. I know she’ll bring so much joy and happiness into our family during this time of heartache, but it’s bittersweet because he should be here.”
Matthew Robertson and Gracie Fragale.Courtesy of Fragale-Robertson Family
By sharing Matthew’s story, Gracie wants to raise awareness about epithilioid angiosarcoma and encourage people to go in for their annual physicals, which Matthew made sure to go to shortly after he started feeling off in May. After his physical, his blood work came back showing elevated liver enzymes and an elevated white blood cell count.
Though the counts were higher than normal, “we didn’t think too much into it and neither did his doctor,” says Gracie, who works in University Support Services at St. George’s University. “His doctor said, ‘It’s probably nothing, but let’s get the blood work redrawn.'”
When the results from the redraw came back, they showed even higher counts for his liver enzymes and white blood cells. But his doctor still wasn’t too concerned.
“He said, ‘If you start having a fever or if you start feeling sick, go to the emergency room,” Gracie recalls.
In the days after his doctor visit, Matthew started having night sweats, and he kept feeling more and more tired. One morning, he woke up and said, “I think I should just go to the ER,” Gracie says.
There, Matthew underwent a CAT scan and an abdominal ultrasound. The tests found lesions on his liver, spleen and back. “The doctors were like, ‘We think it’s cancer, and you need to do something about this,'” Gracie says.
Since doctors thought there may also be lesions on Matthew’s pancreas, they directed them to a pancreatic cancer specialist. After a blood marker test, the specialist ruled out pancreatic cancer and thought he might have lymphoma. She recommended a liver biopsy, so they got one done the next day.
As they awaited the results from the biopsy at home, Matthew kept getting weaker.
“He couldn’t sleep, he couldn’t eat and he felt super bloated,” Gracie says. “He couldn’t do anything.”
Matthew and Gracie Robertson.Courtesy of Fragale-Robertson Family
Despite their joy, Matthew’s condition continued to decline. On May 31, Gracie decided to take him back to the ER because he wasn’t “drinking or eating anything.”
“When we got there, he was immediately rushed into the ICU for acute renal failure,” she says. “They put him on a round of hemodialysis, which is just three or four hours of just heavy duty dialysis. Then they switched him to CRT dialysis, which is a continuous and slower method of dialysis.”
Since they were still waiting on the results from the liver biopsy, doctors couldn’t immediately figure out how to diagnose him.
“He would get better and then get worse — it was really a rollercoaster,” Gracie says. “Doctors didn’t even think he was going to make it through that first night. But he did, and he fought so hard.”
Even after Matthew was intubated, Gracie says she “didn’t lose hope.” Eventually, though, his body couldn’t keep up.
“The doctors were taking every extreme life saving measure they could — they even shocked him four times because of his blood pressure dropping — but they said his liver had become more tumor than liver,” she says. “His body was just being beaten up.”
When the results from his liver biopsy came back, he was diagnosed with epithelioid angiosarcoma, which often originates in deep tissue.
“Sarcoma means fleshy growth, and angio means blood vessels,” says Dr. Charles A. Forscher, MD, medical director of the sarcoma program at Cedars-Sinai Cancer in Los Angeles. “So an angiosarcoma is a malignant tumor, or cancer, that’s trying to be a blood vessel, but it’s malignant, so it’s not doing it right.”
Angiosarcomas can start in the liver, spleen, heart, breasts and bone and often “occur without a known predisposing entity,” Dr. Forscher says. “They can be very difficult to diagnose.”
Dr. Forscher, who did not treat Robertson, says that epithelioid angiosarcoma is “extraordinarily rare.”
“Sarcomas make up one percent of tumors in people,” he says. “There are about 15,000 soft tissue sarcomas a year in the United States, and angiosarcomas are maybe around two or three percent of that.”
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While there are chemotherapy drugs that have been utilized to treat angiosarcomas, the benefits tend to be “short lived,” says Dr. Forscher.
“These tumors can be highly aggressive,” he says. “The ones that are in the organs tend to not do well.”
Given the dire prognosis, doctors recommended taking Matthew off the breathing machine, and Gracie agreed.
“I was in bed laying with him as he took his last breath,” Gracie says. “I said, ‘Thank you so much for fighting so hard. All the doctors are so impressed with you. You put up a hell of a fight. You can relax now.’ I hope that comforted him.”
Through it all, Gracie says Matthew never lost an ounce of love for her.
The couple’s love story began when Gracie swiped right on Matthew on Bumble in October 2018, just a week after he moved from his home state of Nebraska to Long Island, New York, for a job opportunity working in sales and advertising for AAA.
After they matched, Gracie reached out to him, and they started talking.
“It happened super fast and super naturally,” she says. “We decided to meet up and get coffee a few days after talking and then after that first coffee date, we had our second date and then our third date. It was kind of like, ‘This is it.'”
Matthew officially asked Gracie to be his girlfriend while on a date at Brooklyn Bridge Park.
“He gave me a white rose and said, ‘It means new beginnings,'” she recalls. “He was excited for our new beginnings.”
When the two moved into an apartment on Long Island together in September 2019, Matthew once again surprised Gracie with a bouquet of white roses. “That was our thing,” she says.
After getting engaged, the couple bought their first home together on Long Island in November 2020. They said “I Do” on Sept. 5, 2021.
“On the morning of our wedding when I was getting ready, he again orchestrated this whole thing with my sister where each of the bridesmaids hand delivered me a white rose and a little note about what he loves about me and why he’s excited to marry me,” Gracie says. “So then I had a bouquet of a dozen white roses and a dozen little notes from him.”
“It’s very common after someone passes that all of a sudden they turn into a saint,” Gracie says. “But you really couldn’t say anything bad about Matthew. I keep saying this, but you see couples on social media and you think, ‘What are they really like? No one’s that perfect.’ But we werethat perfect.”
“Even if we were angry at each other, we would be laughing and kissing within a couple of minutes,” she continues. “He had this thing where if we started a discussion, and we felt it getting tense, he would make us touch our feet together. How do you get mad when someone’s tickling your feet with their toes? We really were that sickeningly perfect, in love couple on social media and behind closed doors.”
Gracie says that she and Matthew didn’t need anything but each other to have fun. In fact, their favorite date was going to Costco.
Courtesy of Fragale-Robertson Family
“His big thing was his initials: MJR,” she says. “He had everything monogrammed MJR, so I knew I wanted a J middle name.”
Even though Matthew’s gone, “we are going to make sure that she knows every single detail about her dad,” says Gracie. “He was truly incredible.”
“I’m so grateful for my family support and the outpouring of love and support from family, friends and strangers,” Gracie says. “It means so much. It’s hard in this moment because I just want him back, and there’s nothing that anybody can do or say that will take that pain away, but it’s nice knowing how much he impacted so many people’s lives. "
source: people.com
