There are some words you never want to hear mentioned in conjunction with your 9-year-old child. Words like:
But many parents do hear those words, and Gainesville, Florida mom, Kathy Liu, is one of them. In March, Kathy took her son, Joey, in for a standard annual checkup, and that single appointment changed their family’s life. The doctor felt a mass that turned out to be a 12cm kidney tumor, and that same day, Joey was admitted to the hospital as the family and their doctors began searching for a diagnosis and developing a treatment plan.
Joey immediately began undergoing a massive battery of tests as doctors and specialists at Shands Hospital at The University of Florida began to piece together the evidence they needed to help Joey. It was apparent that Joey had renal cancer, but unfortunately, there are numerous types, and the diagnostics can take a while.
As is often the case when a child is ill, people took to the web, building Kathy a blog where she and her husband, Luke, could share updates about Joey’s condition. She blogged later, recalling the diagnosis phase, “They told me it was not Wilms for sure. They told me before among all the possibilities, Wilms is the best one with better chance to cure. But all others have poor prognosis. [Then] a friend called and she knew a pathologist in Shands. She told us a name called rhabdomyosarcoma. The next day, another doctor came and told us the biopsy indicating it’s more like rhabdoid tumor of the kidney, which is the deadliest among the three we heard so far. He said among all the children he treated before, no one made it after one year.”
Joey had a diagnosis…and then he didn’t.
Just two hours after absorbing the news of the rhabdoid tumor (clear cell sarcoma of the kidney) diagnosis and treatment plan, Kathy and Luke got more news: another pathologist had a differing opinion and had sent Joey’s biopsy off to both Harvard and the Cleveland Clinic for further insight. These specializing pathologists agreed: this was something entirely different. “Rarest of the rare,” they told Kathy, who was left with a spinning head as she walked her son through his homework and violin practice, attempting to maintain some normalcy.
Two weeks after the initial discovery of Joey’s tumor, the doctors, who had continued to send Joey’s biopsy data around the country to other high-level specialists, had an answer. Sort of. It’s renal cancer. It’s rare renal cancer. But it’s either PEcoma (also called a PEC tumor) or Melatonic xp11 translocation renal cancer. In the end, Joey had to travel all the way to Cincinnati to finalize the specific, final diagnosis: XP11.2 translocation renal cell carcinoma.
“I was told 1 out of ten million children have this cancer,” explains Kathy. “Every year there are about 20 cases in America. In the whole world, there are no statistics. Even the number in America, because it’s so rare, might be wrong. It could be misdiagnosed just like what happened to Joey. Joey was first diagnosed with a different type of kidney cancer.”
What does this all mean?
In February, life was normal. In April, just three weeks after Joey’s diagnosis, Kathy blogged, “Life hurts. It keeps hurting us more and more. Joey went through all the tests, blood test, urine test, radiology, MRI, CT scan. They found more tumors in the lymph nodes in his neck and chest. They took out the tumor from his neck, which is 2cm big and did the biopsy. All these tell me his cancer already spread to faraway place in his body. They called it Stage IV and metastatic.”
Perhaps one of the hardest things for any family dealing with such a rare diagnosis is how much is simply unknown and unknowable. Asked about Joey’s long-term prognosis, now that his tumor has been removed, “They told me because there’s not enough data that there’s no sure answer. They told me if it’s localized, the prognosis is good, 80-90%,” explains Kathy. “If it’s spread like in Joey’s case, it’s very low. The doctor said, ‘If you really want a number, it’s 10-20%.’ That’s because Joey’s already spread from the kidney to the neck. Now he still has tumors in the chest in the neck. So he said, ‘If you really want a number, that’s the number.’ He also said every kid is so different.”
Today, Joey is back at school. “He goes to school and can do most of the sports,” says Kathy, “and he is on chemotherapy for two weeks. He will take it for four weeks, two-week break, repeat, and then a CT scan to see if his body will react to the drug. If it doesn’t work, he will switch to another drug.”
Meanwhile, Sloan-Kettering Hospital is doing a full genome sequencing of Joey’s tumor, information that may be helpful in conjunction with results from a trial in which a teenager’s similar tumor has been transplanted to (and has grown in) mice. Larger scale research is lacking, however, due to the rarity of this cancer and an appalling lack of funding, particularly for pediatric research.
For more information about renal cancer, to keep up with Joey’s case, to cheer on the family, or to donate to Joey’s medical care fund, you can visit Team Joey at http://teamjoeyx.blogspot.com/.
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