THE MOURNING AFTER NATASHA

By Suzanne Leigh

You’ve probably seen the billboards for St. Jude Children’s Research Hospital in Memphis, Tenn., a top-tier pediatric cancer hospital, which treats children from all over the country and some from even further afield.

St. Jude’s sensitive portraits of young heroes have helped de-stigmatize pediatric cancer without airbrushing over the ravages of the condition. These gorgeous kids clearly don’t come from the set of a Disney channel sitcom. Some are shown bloated from steroids, others are emaciated. Some are pictured with the accoutrements of cancer: nasogastric feeding tubes, wheelchairs, catheters coming out of chests and arms. Most patients are pale and bald, hallmarks of slash-and-burn systemic chemotherapy, which has proven effective in treating many childhood cancers.

‘Hey Jude’ video that’s hard to watch

Then there’s St. Jude’s “Hey Jude” video. To some it might come close to schmaltzy; to cancer parents it’s hard to watch it dry-eyed.

When my daughter’s cancer came back at age 10, I sent a desperate email to a St. Jude oncologist, someone we’d never met, who happens to be a world-renowned expert in the type of tumor that she had. Within minutes I got an email response. Were we available to talk to him on the phone? It was Sunday afternoon and we were planning on taking the kids to the park, but now we were most definitely available immediately.

After an hour-long conversation in which he offered us hope with a treatment regimen that is prolonging many young lives, he reminded us of the hospital’s policy: if we were uninsured or our hospital did not offer the recommended treatment, St. Jude would take care of our daughter for free. And they’d foot our plane fares plus six weeks’ accommodation while she would be under their care.

A cure for all kids?

Since that conversation, we’ve donated to St. Jude, run in one of its marathons and bought merchandise from its online store (is St. Jude the only cancer nonprofit that actually sells stuff you don’t mind getting for a birthday gift?).

So what could be less than laudable?

On its website, St. Jude provides statistics showing the impressive strides made in treating pediatric cancers, comparing 1962 five-years-or-more survival rates with the national averages from 2001 to 2007. Acute lymphoblastic leukemia up from 4 percent to 94 percent!  Non-Hodgkin’s lymphoma up from 7 percent to 80 percent! Medulloblastoma (the most common type of malignant brain tumor) 85 percent, up from 10 percent!

But it sidesteps those cancers with survival rates that have not improved significantly for more than 10 to 20 years, including the third most common type of malignant brain tumor, DIPG, which continues to have the same dismal outcome as when the disease was first identified decades ago. To the uninitiated these figures suggest that progress is so dramatic, all childhood cancers could be cured in a few years’ time.

These statistics also fail to make the distinction of whether these five-year rates are “overall survival,” which includes those children with cancer that has recurred and whose futures may be very limited, and the “event-free survival” group, patients who have remained cancer-free and have significantly more cause for optimism.

Another omission is that many of these five-year “survivors” will suffer a secondary potentially fatal cancer due to the toxicity of the chemo and radiation that saved their lives.  In other words what had “cured” them, could one day kill them. While secondary cancers can be a concern for adult cancer patients, children are more vulnerable to the effects of chemo and radiation and have more years in which to develop them.

Kudos to those researchers at St. Jude and other hospitals who are working on modifying treatment protocols that are less likely to cause secondary cancers, and to those involved in clinical trials for the most challenging cancers, including DIPG.

Fallen warriors

But in trumpeting those advances that have been made in some cancers, without referencing those in which the cure rate has plateaued, St. Jude is perpetuating the myth that the future is potentially bright for kids with all types of cancer; and if an effective treatment isn’t available now, it could happen tomorrow.

Some 1,340 children under 14 die every year of cancer and many more will die as older teens and young adults due to a late recurrence, a secondary cancer or a treatment-related illness. I’d like to see St. Jude, as well as other children’s cancer hospitals, acknowledge these facts and figures, and emphasize that while there have been triumphs in the treatment of children with cancer, a cure eludes many young patients.

And let’s not forget those fallen warriors whom treatment failed when we talk about heroes. My daughter was a hero, too.

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