Everyone knows that raising a child is hard. No one talks about the biggest reason why.
As some of you know, Leo was born with a skin condition: a giant congenital melanocytic nevus
with satellites. That is, he was born with a single bumpy, hairy, dark brown mole that covered about 80% of his back and about twenty-five other moles, roughly between a dime and a quarter in size, on the rest of his body. Although congenital nevi are merely uncommon, giant ones are rare, estimated to occur only once in every 500,000 births.
Most of the time, the consequences are mostly cosmetic. The condition is associated with a slightly elevated risk throughout his lifetime of melanoma. There can be some other concerns, since, among other things, nevi lack sweat glands, so kids with even larger nevi than Leo's are sometimes at risk for overheating. He still has the satellites, and, like most of us, he gets new, smaller moles from time to time, but the giant nevus was removed from his back in a series of seven operations, the last one on his second birthday. (Happy Birthday, Leo!)
There's a support group for people with nevi and their families
. The rarity of the condition makes the group relatively small, and you get to know people. There's a conference in Dallas every two years, and the next one is coming up in July. We're going, and we're taking Leo.
Sometimes, though, this rare condition has an even rarer complication called neurocutaneous melanosis (NCM)
. In this condition, pigment cells, sometimes cancerous (that is, melanoma), grow on the spinal cord, brain, or both. Symptoms can include seizures, hydrocephalus, and other things. Symptomatic NCM is a bad sign, although it is no longer regarded as an automatic death sentence. If NCM progresses, though, it is inevitably fatal, whether the pigment cells are technically melanoma or not.
Leo had an MRI as soon as he was old enough to tolerate general anesthesia, and it showed no signs of NCM. But not all kids and parents are that lucky. Riley died this afternoon at home, just a few days after his ninth birthday.
I had followed Riley's story, sometimes in tears. I hurt for his parents. The pain is just a little keener, though, because, clean MRI or no, we can't be completely sure that won't happen to Leo, and that we won't be the parents who have to find a way to live during and afterwards.
But then, really, who can?