Losing Natasha, and Stalled in the Battle Against Child Cancers

How do you prepare your 12 year-old for death?I don’t have children for a few reasons, but among them is the possibility, no matter how remote, that I would have to answer that question. Call me paranoid, or simply a coward, unreasonably reluctant to bring life into an uncertain world. I’ll accept those characterizations.I have seen children laid to waste by neglect, sometimes dead and sometimes better off dead. I’ve seen them shaken to blindness, starved and beaten beyond recognition, used sexually like appliances. But while those things haunt me, they are at least things I know I would never subject my own child to, and they are things I am reasonably confident I could protect her from.But cancer is a beast I cannot guard against. There are no locks I could install between it and my child; no words of caution I could impart to keep it at bay; no signal or alarm I could create to alert me it was afoot.In a blog called The Mourning After Natasha, a mother named Suzanne Leigh writes nakedly and beautifully on the sickness and death of her daughter, diagnosed with a brain tumor in 2008 and dying nearly five years later. She writes piercingly of the stalking anxiety of the process overall, but particularly about things like moments of panic when an MRI was reviewed, or when her daughter stumbled or mispronounced a word.Suzanne, her husband, their younger child and Natasha herself bore it all- the hideous roller coaster ride of life and death that is the the current response to cancer in a human body; “successful” surgery, “concerning” scans, “unchanged” prognoses.She also writes about delicately raising the subject of “if you don’t get better” carefully with Natasha while on the way to yet another medical appointment. From what she tells us, it was not a subject her daughter dwelt on. She apparently just lived her life cheerfully and as fully as possible, being a part of her family and returning the love that showered down on her. That said, Leigh tells us she wrote beautiful and kind letters to her sister and others in her life as if she knew her time was limited.Children I’ve encountered in my line of work have always amazed me with the courage they display, the quiet dignity they carry themselves with, and the endless positivity they seem to be able to summon even in the most wretched of circumstances. Often, the criminal litigation that myself and my team ferried them through was the least harrowing of their reality. At times I’ve been tempted to attribute at least some of their remarkable spirit to a blessed ignorance; a lack of context for how much easier things could be, and paradoxically how much worse it just might get. But I have no right to assume anything like that; it cheapens what they achieve.Leigh’s blog is terrifying reading, particularly for a parent, but it is highly worthwhile. Perhaps even more important is what she writes about the reality of cancer research and funding in our society. Children comprise 1% of cancer patients, so the fact that only 4% of research resources go to childhood cancers might initially seem “fair.”But consider that the average age cancer strikes an adult is 67, and in a child it is 6.Even if the tragic loss of potential- in every way- from the death of a child is disregarded in light of the arithmetic above, how does simple human empathy in all of us not demand a keener focus on sparing a mother and father this unbearable loss? Death in middle or even advanced age can be heartbreaking. But nothing compares to burying a tiny body. Nothing.The phrase “mommy, I have a headache” should send a mother unhurried to a medicine cabinet, not awaken a cobra in her guts. But Suzanne Leigh and her family lived exactly that scenario, through to a child's death. We will never reverse the sometimes remarkably cruel order of nature. But a nation as advanced and powerful as ours should be stalking an end to this horror with the same energy it stalks us: With every single thing we have.