For most people, the thought of your child being diagnosed with cancer is either too far removed from reality or simply a consideration beyond contemplation. With that being said, childhood cancer is in fact the number one cause of death by disease in the United States and not some far off concept. Despite the great strides that science has made in creating cures, for many children with cancer there continues to be a lack of effective treatment options.
And so, when we hear the story of an adolescent diagnosed with cancer (Hodgkin’s Lymphoma), who together with her mother are fighting for the right to refuse conventional chemotherapy treatment for a diagnosis with an overall eighty-five (85%) cure rate, it highlights the difficult decisions that parents are faced with when they have a child diagnosed with any form of cancer. Additionally, it brings up further conversations regarding drug development and availability. Ultimately, the courts in Connecticut, where this story is unfolding, have ruled that this seventeen (17) year old is not competent to make the decision to forego treatment. She was removed from the custody of her mother after they missed a number of follow-up appointments and forced to undergo chemotherapy.
Parents who have a child diagnosed with cancer are faced with some of the most difficult decisions that they should ever be forced to make when managing their child’s treatment. The side effects from conventional treatments are well-documented, and those fortunate enough to be labeled as “cured”, five years from diagnosis, are left with life-long health problems that for some ultimately leads to premature death. Once a parent hears those bone-chilling words, “your child has cancer” it truly is a Sophie’s Choice of sorts with respect to treatment and the options presented. In our case, we were told from the outset following our daughter Alexis’ diagnosis with DIPG, or diffuse intrinsic pontine glioma, that she would most likely succumb to the cancer within the first year. There were, and still remain, no curative treatments, rather the only available options continue to be either palliative in nature or experimental. We always pushed for and sought out different treatment options given this dismal prognosis. Accordingly, the thought of an overall eighty-five (85%) cure rate with available treatments would have been very welcome for my wife and I.
Since my unfortunate entry into the world of childhood cancer, I have seen parents of children with DIPG make the difficult decision not to seek treatment for their child. That was their choice given the knowledge that they were presented with the diagnosis. It is neither wrong nor right. It is simply a horrible decision that a parent is forced to make for the most precious and vulnerable member of their family.
This brings me back to the story of Cassandra C. I for one, in retrospect, would have appreciated the same odds of survival from the outset of diagnosis. Of course, there is still a very real chance, even with such odds, that your child does not survive the diagnosis. There are no guarantees in the world of childhood cancer. This fact cannot be overlooked. Nevertheless, if this were my child I would choose the conventional treatment. With my thoughts on what our personal decision would have looked like, I find Cassandra C’s position and her thoughts very compelling. Ultimately, whether you agree or disagree with either Cassandra C’s position or the court’s ruling, this story highlights so many of the existing issues that need to be addressed for children diagnosed with cancer. As parents, adolescents and young adults facing childhood cancer, we make choices based upon perspective, available information and the circumstances of very difficult situations that challenge our very core.
In the end, this case, the case of my daughter Alexis, and every child diagnosed with cancer, highlights the need for a greater and more robust conversation about ensuring that, not only more treatments are available, but that the therapies are less toxic and more effective. When medicine arrives at that point, the choices will seemingly be quite simple.
Author: Jonathan Agin, Director of External Affairs
Follow Jonathan on Twitter @jonathanagin