When a child has cancer

Sad news, via NYT:
Hodgkin's Returns To Girl Whose Parents Fought State

A bitter standoff between the parents of a 12-year-old and Texas social workers and doctors over radiation treatment ended on Friday on a somber note with a medical report that the girl's Hodgkin's disease, which had seemed in remission, had reappeared.

Katie Wernecke was taken into custody last week.

The parents, Michele and Edward Wernecke, lost custody of their daughter Katie a week ago, after opposing radiation therapy as unnecessary. When the new test results were announced at a hearing in juvenile court, the parents quickly complied and agreed through their lawyers to let doctors set the course of treatment, which could resume in days.

Who can imagine the anguish that this family has felt? They've (apparently) been blogging about their experiences, detailing their disputes with doctors and the state. Their love for their daughter is obvious. But, if said blog is trustworthy (a big "if"), they clearly interpret their daughter's tests in their own way, and trust their own judgment far more than that of their oncologist. They also talk about a referral to a psychiatrist. Did they go? The blog doesn't say...

Here's the blogging pediatric oncologist at Q Daily News:

Whatever their arguments turn out to be, as a pediatric oncologist, there are two truths that guide most of what I do in the clinic: first, the achievement of remission doesn’t mean that the treatment so far is enough to prevent relapse, and second, there is a stark difference between what we know to be true and what we suspect may be true...

He explains the rationale for continuing treatment when remission is achieved. He adds,

...here’s where there is a kernel of truth to what the Wernecke family is saying — there is currently a study being run by a national pediatric oncology consortium to examine whether there is a select group of Hodgkins lymphoma patients in whom radiation can be omitted from their therapy. But here’s why it’s just a kernel of truth, and not the whole truth: the hypothesis of the study contends that it’s only the truly lowest of the low-risk patients who could be cured without radiation, and in fact, an intermediate-risk arm of the study had to be closed because it was clear that the patients were doing worse (read: more early relapses). And thus, while pediatric oncologists believe to be true the fact that there’s a subset of lower-stage Hodgkin’s patients who don’t need radiation to cure them of their disease, we also know to be true that with the chemo medicines we have today, higher-stage patients require radiation in order to give them any chance of a cure.

Again, this is sad, mostly because the family and the oncologists weren’t able to come to a consensus that acknowledged the sometimes-bad side effects of treatment for a cancer that is certainly lethal without effective therapy...

For a family in crisis, with a frighteningly ill child, sorting through this data can be a nightmare:

In the initial period after diagnosis, parents sometimes doubt the accuracy of what they have been told...If a diagnosis is difficult to determine, they may wonder if the medical staff is as knowledgeable as they should be. They may decide to seek a second opinion. Initial disbelief or denial, like shock, can buffer very painful feelings. It is a way for parents to gain time to adjust to the disturbing reality of their child’s diagnosis and to confirm that their child will receive necessary and appropriate treatment. Only when parents’ denial delays timely treatment is there a problem...

Being anxious and fearful when events and their outcome are unfamiliar and beyond our control is a normal human reaction...Since physicians cannot guarantee the outcome of treatment for any particular patient, fear of the possible death of a child or adolescent is not unreasonable. Having to rely on the knowledge and skill of others to protect the life of a much-loved child is frightening. Facing major changes in daily life is upsetting and parents may worry that they will not be able to manage all that will be asked of them. They may also be concerned that their child will not be able to cope with the necessary treatment. They worry about the impact treatment will have on their child’s body and self-esteem. Fear of the intensive treatment, of an uncertain future, and of the unknown is very understandable...

More on children and cancer, at the American Cancer Society Website.