A Bereaved Mom Braces for Christmas
We’ve made it through Thanksgiving and the first anniversary of our gorgeous girl’s passing. Now we’re dealing with the “Merry Christmas”-es and shortly thereafter the “Happy New Year”-s. Ugh.
For Christmas, I’d like my elder daughter back please. I would like to look into her eyes (bright and curious), listen to her talk about something she loves, stroke her tender cheek and tell her that I love her — boundlessly, perdurably and in aertunum. This will not happen. Ever.
In the absence of what I can’t have, here’s what I’d like to see happen:
• A time-out for People magazine and the TV talk shows that seem to be drawn like Narcissus to water when it comes to wooing the latest glamorous celeb with a cancer diagnosis. (I should mention that I’m not talking about neonatologist Jen Arnold, the unlikely reality star whose medical conditions include stage III choriocarcinoma and a rare form of dwarfism.)
Cancer makes for a compelling story. When a famous person has a rare cancer or one that is underfunded or has a low cure rate, their story should be welcomed because there’s an important message to be learned about the inequities of this disease. But most commonly the “glossip” mags and the talk shows feature those with good prognoses. Here’s what I’ve learned from five years in the oncology world. If your oncologist says your prognosis is good, then your prognosis is good. It does not behoove them to give patients false hope. If celebs with a low-grade cancer want to share their story, please give a shout out to those patients whose future looks bleak; they deserve to be heard. And moms with cancer whose prognoses are good, really, get a grip! As a parent you are meant to be courageous and resilient — not tearing up as you tell America that you sob yourself to sleep.
• More accountability from cancer nonprofits: there are excellent ones, ones that are good at reaching some goals and not so good at reaching others, and those that are frankly questionable. “Support,” “education” and “advocacy” are words that many use to describe their mission. These goals may be desirable, but how does this translate in today’s world where up-to-date medical information is readily available online; where support comes to many patients and their families in the form of social media rather than a nonprofit’s toll-free number; and advocacy runs rampant on Facebook and newsgroups, thanks to parents whose drive for better treatments is fueled by the stress and desperation of their child’s diagnosis. It would be good to see more transparency in how nonprofits divvy up their revenue: where exactly are donors’ dollars directed and what is being achieved? Most important of all: what percentage of income reaches research into better treatments?
• Higher cure rates. Let’s stop celebrating these “remarkable” cure rates for kids with cancer. Yes, we know that survival rates for children with the leukemias and lymphomas are way up from where they were 40 years ago. This is especially true with acute lymphoblastic leukemia, the most common type of childhood leukemia. But these increasing survival rates have actually slowed since 1998 according to data published in the Journal of Clinical Oncology,* and for other childhood cancers they’ve increased only modestly or worse they’ve stagnated for decades. Now is not the time for the pediatric oncology community to rest on its laurels. There are 1,545 reasons** why they need to forge ahead. My Natasha, whose future was once as luminous as her face and who should be looking forward to high school, is one of those reasons.
The next time I post, it will be 2014. I won’t sign off with “Happy Christmas/Holidays/New Year,” because I know this is salt on the wound for fellow bereaved parents. But I’d like to thank everyone for reading about Natasha’s life and following my journey as her grieving mom. I’m honored and touched.
*From the Journal of Clinical Oncology: “Outcomes for Children and Adolescents With Cancer” http://jco.ascopubs.org/content/28/15/2625.full
**This figure is reported by the National Cancer Institute and refers to the annual death rate in children aged 14 and under. Note that older teens and people in their twenties die from pediatric cancers, due to later age of diagnosis, recurrences, secondary cancers and complications of treatment.