His symptoms started two years ago while on a family vacation. Thirteen-year-old Manuel Sanchez Paniagua was increasingly tired, and his stomach hurt. His parents thought he must have caught a stomach bug on the trip, so when they got back to their home in Mexico City, they brought Manuel to the doctor. Unfortunately, it wasn’t just a stomach bug.
Physicians told the family that Manuel had a rare cancerous tumor in his liver called hepatoblastoma. When they went in to biopsy the tumor to confirm the diagnosis, they accidentally caused severe internal bleeding, and Manuel ended up in the ICU for a week.
A second opinion
Once he recovered from the biopsy, Manuel began chemotherapy for the tumor. A month later when the tumor had not shrunk as expected, Manuel’s parents decided it was time to get a second opinion, but from where?
“In Mexico, you ask around for the best hospital in the world, and the aunt of the friend of the cousin of the brother knows,” laughs Manuel’s father, Hector Sanchez Castillo. On the advice of the “aunt of the friend of the cousin of his brother,” Hector called Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and spoke to Dr. Carlos Rodriguez-Galindo. “He told us that the tumor was not the one that we thought it was—it was worse. There are bad tumors, and there are really bad tumors. This was one of the really bad ones.”
Dr. Rodriguez-Galindo explained to Hector and his wife Alejandra Paniagua that their son had hepatocellular carcinoma, an aggressive type of liver cancer that does not respond well to chemotherapy. What was worse, it had already spread to Manuel’s inferior vena cava (IVC), a large vein that carries blood from the body to the heart. Manuel would need surgery immediately. “We basically lost a month and a half,” says Manuel’s mother. “Thank God we got a second opinion, so we didn’t lose any more time.”
A very complicated surgery
Within a week of getting a second opinion, the Sanchez family packed up and left their home in Mexico City for Boston. Boston Children’s surgeon Dr. Heung Bae Kim led a 13-hour surgery to resect Manuel’s tumor, “one of the hospital’s most complicated,” according to Dr. Rodriguez-Galindo.
There were more than 30 clinicians in the operating room from both Dana-Farber/Boston Children’s and Boston Children’s Heart Center. “A cardiac team worked on his chest, while another team worked on his liver on a table,” says Manuel’s mother.
Dr. Rodriguez-Galindo has kept the Sanchez family informed throughout Manuel’s journey. “Dr. Rodriguez-Galindo is an excellent physician,” says Hector. “And extremely empathetic,” adds Alejandra, “which is spectacular in this situation where we need empathy. He speaks in Spanish when it’s just us, and in English when there are other doctors around who don’t speak Spanish. As a parent, you want to understand everything about your child’s condition, so the hospital interpreters are a blessing.”
Two additional surgeries ensued, plus three rounds of chemotherapy. In February 2013, Manuel went into remission. The family started getting back to their normal life in Mexico again; no more hotels, no more homework from the hospital, no more lobster rolls. “Boston has become our second home,” says Hector. “We’re now fans of the Red Sox, the Bruins, clam chowder and lobster. When we’re in Mexico, we miss the shellfish. When we’re in Boston, we miss the tacos.”
From remission to metastasis to remission again
There have been no tumors in the year since that seizure last September. Instead, there has been school, friends, an epic trip to Alaska and another one being planned to the Galapagos Islands. “Now he has a bigger appetite and more energy. He keeps getting better and better,” says Alejandra.
In September 2014—a year and seven months into remission—Manuel suffered a seizure and flew back again to Boston with a diagnosis that no parent wants to hear: Manuel’s cancer had metastasized to his brain. More surgeries plus more chemo, and Manuel was back in remission, this time the family hopes for good.
For four more years, Manuel will come back to Dana-Farber/Boston Children’s for scans to check for tumors. And every time, the whole family will be there—Manuel, Hector, Alejandra and 17-year old sister Ximena.
“We have to stay together,” says Alejandra. “This is a family issue, not an individual one. If it goes well, it goes well for all of us. If it goes bad, it goes bad for all of us.” Hector adds, “There’s a saying in Mexico: a todos coludos o a todos rabones. It means that we’re all in this together. We either all leave with our tails intact, or we all leave without them.”
Learn more about the liver tumor program at Dana-Farber/Boston Children’s.