HILLSBORO Ore. (KPTV) – A Hillsboro father of four has been diagnosed with a rare form of cancer and is preparing for a complex surgery at a Texas cancer center after local doctors said the procedure requires a specialist rarely found in the region.
Jason Akileh, 41, was diagnosed with signet ring cell adenocarcinoma after going to the hospital on March 31 for stomach problems.
“I would be really hungry, but I would take like two bites of a meal and feel completely full like I had eaten Thanksgiving dinner,” Jason said.
After a series of tests and scans the family was initially told the issue was not cancer. About an hour later, a physician returned with different news.
“We know it’s not cancer. And so then, gosh, it was maybe an hour later, the doctor came in and you could tell like on his face, like right away, something was wrong,” Jason said. “And he said that the biopsies did show a rare form of cancer called signet ring cell that grows in between the layers of your stomach and your esophagus.”
Because the cancer grows between tissue layers rather than forming tumors, standard testing did not detect it initially.
“This cancer is so rare that a lot of these doctors that were doing these tests haven’t necessarily seen this,” said Jason’s wife, Amanda.
Jason’s best chance is a surgery to remove his stomach and part of his esophagus, performed by three surgeons at MD Anderson Cancer Center in Houston, Texas. The extent of what must be removed will not be fully known until the operation is underway. If the cancer extends too close to the heart, a second surgeon removes the esophagus entirely up to the throat, and a reconstructive surgeon then connects the rerouted intestines and blood vessels. The surgery carries significant risks, requires extensive out-of-state recovery and comes with considerable expense.
A physician initially told the family Jason had a 30% chance of survivability at five years. The couple is more optimistic after meeting with the specialist in Houston. “He’s like 60% cure rate with him. And we’re like, yeah, I think he was surprised by our reaction because we were so happy to hear,” Jason said.
He said he has tried to keep perspective on the statistics.
“I’m a numbers guy, I’m a math nerd. And so it’s a constant reminder that most of the statistics that are bad are just for older patients. You know, it’s not common that people in their 40s are going through this,” he said. “And so, otherwise my health is good and, you know, I’m in good shape and healthy and active and with the right surgeon, we’re hoping that this is going to be okay.”
The road to surgery has not been without complications. Jason required an emergency bedside operation after his body rejected his chemotherapy port, and the radiation has sent him to the hospital several more times after his initial two-week stay.
“Whatever could go wrong has gone wrong in this,” Amanda said.
Life has changed significantly in recent months for Akileh, his wife Amanda and their four children. Their oldest child recently graduated high school and is headed to Portland State University. Their youngest is 6 years old- the family recently celebrated both a kindergarten graduation and a senior graduation.
Jason, who enjoys coaching his children’s softball or football teams whenever he can, said his motivation throughout has been his kids.
“When they first told me, you may have to have your stomach removed and all these things, all I could think about was the kids and the fact that my oldest is going to college. He still needs me. My youngest is 6. Like I have a lot of dadding to still do,” Jason said. “And so when they said, we may have to take your stomach, I said, take my stomach, take whatever needs to come out to give me a chance at like seeing my kids grow up, do it.”
“We’re not afraid of whatever we got to do if it gives me a better chance of being here for my family,” he added.
A family member has started an online fundraiser to help cover medical and travel expenses. Follow this link to donate.
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