Wow, That Must Be Tough

The first reaction most people have when I tell them I'm working pediatric oncology right now is: "Wow, that must be tough."

And you know what, it is.

Cancer is a nasty and tragic disease, and is particularly evil when it exerts it ravages on the young and innocent. So when I started my term through pediatric hematology/oncology, I was really curious to observe how the various docs went about dealing with such heart-wrenching tragedy in this unique field. Yet, so far I've found there's no secret formula used here. Physicians treat children's cancer the same way most physicians in any area of medicine do: by separating the patient from their disease, and going like hell after the disease. By looking at outcomes and odds instead of any patient's individual fortitude or attitude. By using established regimens instead of letting bias of how well they think one patient may tolerate a specific treatment cloud their judgment. But, just like other areas of medicine, it doesn't protect you from the real tragedies - the patients who fight like hell, who beat the odds. The patients who are a true joy to work with, but who ultimately succumb to the very odds they have proven wrong for so long.

The entire clinic loves this one patient - I'll call him Ricky. Ricky is a hilarious, upbeat, smiling 11 year old boy. Who has had acute lymphoblastic leukemia 3 times. His latest relapse came last year and he had a successful 3rd bone marrow transplant about 150 days ago with successful engraftment. Odds for kids with relapsed ALL aren't good. We have about an 80% cure rate right now if it's your first bout with the disease. But for the 20% with a first relapse, their odds of a second relapse skyrocket to nearly 80%, and each ensuing relapse it more difficult to treat as the toxic effects of chemotherapy ravage the body and as each generation of cancer cells grows more and more resistant to typical therapies.

Still, Ricky was looking to beat the odds again. His 3rd bone marrow transplant had established well and they were working on getting Ricky to taper off his immunosuppressive drugs. Everything was going great, and about 2 weeks ago the mom brought in Ricky cause he was feeling a little under the weather and his sister had recently had bronchitis. Since Ricky was still on immunosuppression, we did an xray (which came back negative) and told mom to come back in 3 days if he didn't start feeling better.

Sure enough, that next Monday, Ricky and his mom were back, and Ricky wasn't feeling any better. A second xray was ordered, and bad news: something was definitely growing in Ricky's lungs.

They immediately admitted him, but this sort of thing happens a lot with immunosupressed post-transplant kids (especially if they are back to school (a.k.a germ factories) while they are on them), and it would be expected he would be home within a week after a round of our big gun antibiotics.

I saw Ricky the Monday when his mom brought him in the second time.

And I saw Ricky in the PICU a week later, being intubated because the infection has steadily progressed. The last thing I heard him say before I left the room was "I'm going to die."

In normal people who get sick with community-acquired pneumonia, the culprit is a soft gram positive little bug called streptococcus. And most immunosupressed kids who catch an infection while out and about in the world catch your garden variety strep (or one of the several other common bugs you yourself are very familiar with from every time you get a cold or a cough). We got lots of different guns (drugs) to kick their butts. Streptococcus has a characteristic way of showing up on the xray, building up down in the base of your alveoli of your lungs.

But that's not what Ricky's xray looked like. Whatever was growing in Ricky's lungs grew is a diffuse, wispy, spider-web like pattern on both sides of his lungs. Not good. Ricky had pneumocystis carinii pneumonia (PCP).

It's very rare for healthy people to get PCP, as our immune system is pretty adept at targeting and attacking it. But in the immunocompromised and immunosupressed, its a nasty, nasty fungus that is incredibly hard to treat. It was one of the biggest killers of AIDS patients early in the epidemic before we had good prophylactic and anti-viral therapies.

Yesterday, Ricky passed away. It's tough when a kid succumbs to a disease, but especially a kid who has fought so hard his entire life and was doing so well, who finally lost to the odds he had beat for so long.

But if there's a silver lining to tragedy, its that it lets us appreciate the blessings we have in our own lives. And the reason people keep fighting to beat the odds is because people have fought before them. Ricky is an inspiration, even if the end of his story didn't go as we all would have hoped for him. So we keep fighting.