05 September, 2014

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I don't write about my work very often, largely out of concern for the privacy of patients and standards of professionalism.

But I do have one of the best jobs in the world.

Like everyone else in my field, I've had the awkward airplane conversation with the person who says "I don't know how you do it" or "I could never do that." Maybe those are honest statements, but I know I am in a position of incredible privilege. I was born in a time and place where a girl could get an education, in a family where having a career and being a mom was a completely respected and supported choice. I had parents who were able and willing to financially support my dreams, including large chunks of my quarter-million dollar education (no kidding). They never pushed me to become anything (much less a doctor) but always advocated for what I wanted to do. They were patient when I took time off from medical school to study medical anthropology. They didn't bat an eyelash when I gave up increasing amounts of future salary to follow my calling (I now spend 50% of my time in teaching, research and advocacy at a medical school). They have always been there to listen, whether I needed to bitch about an administrative issue or grieve for a family. I am blessed to be doing what I'm doing.

There are many days that my work is difficult, intellectually or emotionally, but when it comes to caring for patients, I always, always, always feel privileged to be able to experience that difficulty, to walk this road with children and families who are experiencing it much, much more intensely.

It is an extraordinary privilege to take care of children and their families during the most challenging times of their lives.

Many of their parents have taught me more about being a good mother than I ever imagined. I have been blessed to know them.

It is the greatest joy to watch them grow up. And it is also an honor beyond words to be with someone at the end.

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Some things you might not know...
Children with cancer can be cured even in the poorest countries.
In most high-income countries, 80% of children with cancer are cured...but 80% of children in the world live in low- and middle-income countries, where they have less access to life-saving treatments. In these countries, cure rates can be as low as 20%.

With support, resources and education through partnerships with government agencies, hospitals and doctors in more-developed places, many, MANY more children can survive cancer. Providing curative treatment for childhood cancer is well within the reach of many countries that you may think of as "third world." Guatemala, for instance, has a fantastic pediatric cancer hospital, Unidad Nacional de Oncología Pediátrica (UNOP), supported by the Fundación Ayudame a Vivir.

Access to good palliative care is just as important as access to curative therapy.
In addition, many more children can benefit from palliative care, to make them as comfortable as possible, for as long as possible, sometimes until they are cured! However, access to morphine is a major problem around the world. No child should die in pain because their country's laws prevent them from receiving it, or because their providers fear addiction or other side effects.

Adolescents and young adults are "children" too - sort of.
Biologically, many organ systems (you've probably heard this about the frontal lobes in the brain) are still developing and maturing into the twenties. Many adolescents and young adults (AYA) have cancers that are more similar to pediatric cancers than to adult cancers and many do better if they are treated on pediatric protocols. For young adults with ALL, this is true up to at least age 30.

For several types of cancer, younger children actually do much better than older children and AYA.

Cancer can be cured, but the treatment is still "barbaric." (to borrow a quote from my dad)
The most common kind of cancer in children, average-risk acute lymphoblastic leukemia (ALL), now has a cure rate higher than 90%. This is thanks to decades of research comparing new treatment regimens and studying long-term side effects from treatment. Doctors now try very hard to minimize late health effects and give children the best possible quality of life, whether that is for eight months or eighty years.

Somewhere between 60 and 90% of childhood cancer survivors develop a chronic health problem related to their cancer and treatment later in life. As some readers know, my dad was one of these. He had Hodgkin's disease as an AYA. In fact, he was in one of the first cohorts to have a good chance of cure. However, he had an early heart attack and developed heart and lung failure related to his radiation treatment. This is not unusual, and more research is desperately needed to better understand, prevent and treat late effects, and to develop new ways of treating cancer that are less toxic.

The government supports a lot of really useful research into cancer and cancer treatment.
Many other cancers, including acute myeloid leukemia and high-risk neuroblastoma, are very difficult to cure. The existing treatment don't work well or don't work for many people. Many doctors and scientists - my friends and colleagues - are devoting their lives to research into new treatments and into better understanding how cancer develops in the first place. They desperately need more funding, from nonprofits and from the National Institutes of Health.

The government is far and away the largest source of financial support for health research in the U.S., including childhood cancer. The U.S. is truly a world leader in health-related research.

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When my dad was diagnosed with cancer, the vast majority of children, adolescents and young adults did not survive. Doctors didn't expect their young patients to grow up, much less graduate from college, get married and have children. Because of research over the past 70 years, the type of cancer he had and several others are now considered extremely curable, and my dad lived to hold his first grandchild.  

Most of the time, today, when I tell a family that their child has cancer, I can tell them that this is treatable, and it is curable. I can tell them that most children will go on to lead full lives. I want to be able to say that with 100% certainty. I want to be able to assure them, not only that their children will not die from this cancer, but that they will never have to face another cancer (many chemotherapy drugs carry a risk of causing a second cancer later in life) or struggle with the shortness of breath my dad experienced as his heart failed.

Until then, we need to people to care. To support financially, if you can, but equally importantly, to advocate - to tell your representatives that you want funding for this work to continue and expand, not shrink with budget cuts.

This post is dedicated to to the children and families I've met over the past nine years. You may not realize it, but you are supporting us and teaching us as physicians and providers, just as we try to support and educate you. Your patience with those of us who were still fellows, residents, or medical students, still figuring out what it means to be a good doctor, is a gift to every child and family we will care for in the years to come. Thank you.