Second Guessing

This is difficult for me to write because I have tremendous respect for every doctor that has been involved in my son’s care. I firmly believe that they chose and administered the highest level of care that they assessed as appropriate; that they cared for him both personally and professionally as if he were their own child; and that he was in the care of acknowledged giants in their fields. I write this knowing that I will share this narrative with these doctors, in order that they can better understand the decisions I was faced with and the guilt I must live with feeling that I may not have made the best possible informed choice for my son, because of this trust and relationship.

Let me describe my oncologist. I say “my” instead of my son’s whose doctor he really is, because he is mine too in every sense of the word. He cares passionately about his work and about my son specifically; he engenders my trust because he is compassionate, brilliant, and available to me for concerns both great and small. His accomplishments have saved lives and will continue to impact his field. He became the narrow bridge I walk, that is the only thing between me and dangerous water and rocks waiting below; the balancing bar on the tightrope that is the only thing that stands to keep me from falling into the abyss and breaking my neck. And this made it difficult for me to disagree with him and seek a second opinion. Because his unspoken words were, “Don’t you trust me that I will do the best for your child?” and I could not answer then what I would answer now, “Nobody is infallible and sometimes we may miss something that someone else can see despite how much we know or care.”

It is ironic, I think, that sometimes a layperson, because of her limited knowledge, can see more clearly where a professional may not.

My son was diagnosed at age six with Grade II ependymoma in 2006. He was treated with surgery, a complete resection, and then 33 rounds of conformal radiation. He recurred in 2012, and was diagnosed with anaplastic ependymoma Grade III. He had another surgery, with the same surgeons, who pronounced it another successful total resection. This is where my story begins.

The MRI taken the next day showed a sliver of something there. My oncologist, much sought after for his diagnostic abilities in reading MRI’s showed slight concern that it may be residual tumor, but both the surgeons and the MRI report came back negative, identifying the sliver as inflammation. Six weeks later, 3 days before we were scheduled to leave out of town to receive proton beam radiation, I insisted on another MRI. The sliver was enlarged from the post–op MRI. My oncologist said it was tumor; one surgeon said it was inflammation and the other surgeon abstained from speculation. The MRI report stated it appeared to be recurrent tumor.

Now here was my dilemma as a parent. The prognosis today of radiation on residual tumor for ependymomas is very bad, especially with a residual tumor of his size. On the other hand, my oncologist felt that going in for surgery with no guarantee of a total resection anyway, was incurring a risk of damage to my child that may impact severely on his quality of life.

My oncologist felt that for many medical reasons, inherent risks of surgery, uncertainty about status of the scan reading, quality versus quantity of life, and—I think—an understandably pessimistic view of the possibility of cure for recurrent anaplastic grade III ependymoma, he was against another surgery, and opted to continue with radiation with the tumor as is.

I am part of two support groups on line, one for parents of children with any type of brain tumor and the other specific for ependymoma parents. The clinical and anecdotal knowledge of these groups as a whole is phenomenal because, unfortunately, we have parents who have experienced and researched almost everything about this illness, in all its stages. When I was faced...