The Story of K

When I first met K, we were both much younger. I was a first year fellow, fresh from residency, just beginning to learn how to take care of kids with cancer. K was 12. He was a typical American kid… he played soccer, he worked hard in school, he had many friends. He came to see us because of a painful swelling of his thigh. Several months before, he had injured himself playing soccer, and it never really got better. An x-ray done at the time of the injury didn’t show anything, but a second one, done the day before we met, showed a “small lytic lesion with significant periosteal elevation surrounding it and an osteoid formation in the soft tissue in a sunburst pattern.” That is a series of buzzwords that can mean only one thing: osteosarcoma, or bone cancer.

Over the next few days, K underwent a series of procedures to confirm the diagnosis, to determine whether or not the cancer had spread, and to place a central line to allow us to administer chemotherapy. This was when he received his first good news – the cancer was localized to his right thigh. It hadn’t spread.

Next came the treatment. Two months of chemotherapy before the first surgery, removal of the tumor and placement of an artificial knee. It didn’t end there, though. More chemotherapy followed, and it wasn’t until December, 9 months after we met, that the treatment was completed. Unfortunately, K’s story does not end here.

Over the summer, there was a suspicious test result. In the fall, the radiologists were pretty sure the tumor had returned. A biopsy proved it, and in late November, almost a year after completing chemotherapy, K had to have an amputation of his right leg. He took the news well, considering that when I told him that we had to do this, he was only 14 years old. There were a few tears, as expected, but no “Why me?” no feeling sorry for himself… just a simple, mature acceptance of his fate and a strong desire to do whatever it takes to get well. K adjusted well to his prosthetic leg, and was up and walking faster than anyone expected. He even did well with the 6 months of chemotherapy that followed the amputation, a precaution to be sure that the tumor never came back again.

Not all precautions are successful. A CT scan the following August, 3 years and 4 months after his initial diagnosis, showed a tumor nodule in his lungs. The conversations that followed were intense. K was getting older (now he was 15 and had definite opinions about how his treatment should go), and he had already been treated with every chemotherapy drug known to be effective. We spoke many times, for many hours, and finally decided to go with surgery alone. The surgery would remove the tumor from his lung, and we would hope that this would be enough. K did well with the surgery, and stayed only 3 days in the hospital.

It seems K made the right decision. The tumors have not returned. He did have to have another surgery, this time to fix a problem with his amputation site. Throughout it all, K continued to live a normal life. He finished high school on time, and was an equipment manager for the football team. He performed in school plays. He went to prom. He learned to drive. And he went to college – an Ivy League school, no less.

K graduated from college this month, and I was invited to his graduation party. A happier moment you can’t imagine. K has been through more in his 21 years than most of us will go through in our entire lives. And yet he came through it all so totally normal. He did stand-up comedy on weekends during college, telling jokes about chemotherapy and amputations. He started a website with some classmates, and their business is going so well he’s doing it full time after graduation.

Why do I tell this story? So often, people think that taking care of kids with cancer must be the most depressing job imaginable. Far from it. Who else can say that they have taken care of a patient for 9 years, watching him grow up through such extreme adversity, and still make such a success of himself? No… pediatric oncology may have its hard moments, but patients like K are the reason I keep going… they inspire me, and I hope his story will inspire anyone who reads this post.

Who am I and why am I here?

My name is David Loeb, and I’m a pediatric oncologist.

Whenever I say that, I’m reminded of how people introduce themselves at AA meetings. Unlike being an alcoholic, being a pediatric oncologist is not a problem, really. You might think so from the looks I get when I meet someone and tell them what I do for a living. “You do what?” “That must be so hard!” “How can you do that every day?”

I’ll tell you… I can’t imagine doing anything else with my life. I have a fabulous job. I have a lab, where we study cancer at the molecular level and are trying to understand how good cells go bad and do bad things to kids. I see patients, too, and they provide me with the inspiration to go back and work harder in the lab to find new ways to treat them.

I love kids. They tolerate so much while we treat them. And yet, no matter how miserable we make them, all they want to do is be kids – to run and jump and play. It energizes me to walk into clinic and feel the joy emanating from the kids.

How did I get to where I am? Well, I studied biology in college and then went to medical school at Columbia University in New York. I earned my PhD at the same time, and after graduation I moved to Baltimore to do a residency in pediatrics at Johns Hopkins. I haven’t left. After all, how can you leave America's #1 hospital?

This is my 7th year on the faculty as a pediatric oncologist. Last October I was appointed the Director of the Johns Hopkins Sarcoma Center. Sarcomas are rare tumors of the bone, muscle, fat, and other connective tissue (connective tissue is what holds our bodies together). Because they are rare, they are not mentioned often in the newspaper, there is not enough research funded for sarcomas, and because of this much less is known about how best to treat these awful diseases. Patients and their families often feel alone when they get a cancer diagnosis, and it’s even worse when it’s a kind of cancer they’ve never even heard of.

Why, at this point, am I starting a blog? My goal with this blog is to provide support and information for patients with cancer and their loved ones. I’ll tell stories about my patients… mostly good, but not always. I’ll highlight news related to cancer research, including reports of new drugs and new treatments. I’ll discuss new clinical trials. And most importantly, I hope get to know the the people who are reading my blog - and that we will learn from each other.