April 8, 2010 Leave a comment
I am sitting in a room in Austin, Texas. My youngest daughter, Miranda, went in for tests today. The doctor has recommended she start going to the survivor clinic and she will only have to see him once a year. It is a good feeling. Yet, deep in the back of my mind I have a small bit of uneasiness as I still don’t have results from the scans. We call this scanxiety.
If it were in Miriam Webster’s Dictionary, it would appear like this:
Main Entry: scanx·i·ety
Inflected Form(s): plural scanx·i·eties
Etymology: Middle English scannen, from Late Latin scandere, from Latin, to climb; akin to Middle Irish sceinnid he springs, Sanskrit skandati he leaps and Latin anxietas, from anxius
Date: 14th century to circa 1525
1 painful or apprehensive uneasiness of mind in parents over medical scans performed on their children
2 : an abnormal and overwhelming sense of apprehension and fear often marked by physiological signs (as sweating, tension, and increased pulse), by doubt concerning the reality and nature of the outcome of a scan, and by self-doubt about one’s capacity to cope with it
The odds are on my side. We are past the normal median mark for recurrence for Ewing’s Sarcoma patients. We also have a child who had favorable age, along with placement and “staging” of her cancer (“staging” in quotes, as Ewing’s is not staged like most cancers). Yet there still hangs a small amount of uneasiness at what might come back.
The level of scanxiety is increased in cases with parents of children that have cancers very likely to recur. In some cases, the scanxiety level is so high it overwhelms.
You want to feel a bit of what it feels like. Imagine the picture below is your child. The picture was taken in November of 2007 and is a picture of Julian Avery, who was diagnosed with Medulloblastoma in March of 2007. Cancer finally murdered him on January 19, 2008 and he earned his wings. Forever 4. He just wanted to be 5. The cropping of the picture makes you long to see what is outside of the boundaries, much like a parent waiting for news about whether or not the cancer had come back. Cement the picture in your mind, and imagine it was your own child.
If that is not enough to get the picture through, examine these two pictures below:
Above is the outcome none of us wish on any parent, not even our worst enemies (although you find you have fewer and fewer enemies after going through this route, as you find the things that used to make you hate are inconsequential). And it is both possible and perhaps very probable with many children. While 75-80% of children with cancer survive in the United States, about 2750 children are housed in stone gardens every year, their parents robbed of their laughter, their cries. About 2750 families lose a child, a brother, a sister. About 2750 wish they had one more day, one more week, one more month, one more year, one lifetime.
And the words each parent fears is “the cancer is back”. Imagine it for a moment and you will understand about 1% of what scanxiety is about.
Peace and Grace,