By Jan Greene
I had the opportunity to meet a family that's been through hell and back, but managed to remain smart and informed consumers of healthcare even as their toddler son endured a long and difficult fight with liver cancer.
The Clarks, Richard and Diane, realized their son Dillon was sick during a visit to the pediatrician when he was 18 months old. His belly was distended, and it turned out that his liver was enlarged with tumors. He was started on chemotherapy to reduce the tumors that had also migrated to his lungs, while doctors decided whether they could remove the cancer from his liver surgically. When that appeared to be impossible, the next step was a liver transplant. But they wouldn't put him on the transplant list until the lung nodules were taken care of. Through all this the boy went through multiple surgeries and round after round of chemotherapy, plus regular CT scans for which he had to be restrained. Anyone who's had a toddler can imagine how difficult this was for everyone.
The family hit a crisis point when the doctors decided there was still too much cancer in his body for a transplant (organs, in short supply, are saved for those with the best chance of surviving). Richard Clark, as it turns out, has been a business guy with some biotech companies, and he knew his way around a medical journal article. He challenged the doctors every time they doubted further care would be useful, and understood that just because one doctor's judgment was that treatment wasn't worthwhile, another might give it a go. The family sought second opinions and, with a key medical journal article in hand, convinced another surgical team to take a closer look at Dillon. That turned the tide…a fresh CT revealed the liver could be resected and the original surgeons did the work. After a couple more surgeries to remove the last of the cancer from Dillon's lungs, the boy has been cancer free for two years. He turns five in October, and is as bouncy and lively as any child his age.
The Clarks also faced financial hurdles — when they went out of state for the second opinion their insurer wouldn't pay, so they put the $50,000 on a credit card and got ready to use the equity in their house. The insurer later reimbursed them for much of that. They also struggled to maintain health insurance through the ordeal, using expensive COBRA and high-risk pool plans when the parents couldn't work because their child's medical care took all their time.
Now that their ordeal is over and they are enjoying Dillon, his younger brother and older half-siblings, Richard Clark helps other families facing hepatoblastoma. He's met families who can't quit work or rely on home equity to get through a tough spot. He met one father working construction in California's central valley would finish his shift, drive two hours to Stanford to be with his young child, and leave the hospital in the middle of the night to drive back to work.
The Clarks were fortunate and they were informed, and they are passing their wisdom on to others. In a healthcare system that is complex and often requires patients to take on much of the decisionmaking and coordinating themselves, people like the Clarks are invaluable. They share their knowledge with other families online through websites such as caringbridge.com. It's unfortunate that consumers have to carry so much of the financial, emotional and decisionmaking weight themselves, but the Clarks' experience shows how online communities can spread the burden a bit.