Four years of survivorship and counting!

photo.jpgToday, June 24 2008, marks four years of EFS for my 15-year-old son, Graydon. EFS, for the non-cancer-speakers, is “event-free survival.” While I surely wouldn’t say the last four years have been event-free, there hasn’t been any more leukemia in Graydon, and that’s what we’re celebrating. Survival rates for childhood cancers have increased steadily for the last 30 years: the figures for leukemia are the most striking. Thirty years ago a child with leukemia would die within three months; now it’s known as “the good cancer.”

From B.C. Children’s Hospital website: “Childhood cancer is a rare disease. Every year one child in 8,000 under the age of 17 will develop cancer (annual incidence age 0-17 = 129 per million). . . . Typically, childhood cancers respond well to treatment and children with cancer have a better chance today of living a longer life than ever before. There has been a steady decline in the mortality rate for cancer of children over the last 20 years. . . . Cure rates continue to improve by applying new knowledge gathered through basic research and its application in clinical trials.”

Graydon’s type of cancer—acute lymphoblastic leukemia (ALL)—along with acute myeloid leukemia (AML) and two others, MLL and CML— account for 30 per cent of childhood cancer. The five-year EFS rates are:

• 85% for ALL

• 60% for AML

• 10–90% for other childhood cancers, depending on the type and risk factors. [This is why the resident told me on diagnosis that we were lucky that Graydon had the good cancer, and why a diagnosis of Stage 4 neuroblastoma means you’d better start mustering all the faith, stamina, intelligence and hope you have and get fighting.]

On one of the lists I frequent, PED-ONC-SURV, Cyndi MacKinlay, a very bright mum of a 15-year-old survivor named Andrew (same age as Graydon) has devoted much time and energy advocating for the fight after cancer treatment ends. I don’t want to rail on about it here and now—well, I do, but I won’t—but here is the link to a truly excellent article she wrote about the late effects our kids face: Cognitive Late Effects: We Are Failing Our Children. It’s an eye-opener for all the people, neighbours, friends and family who think once the chemo ends the kid skates onto the ice and it’s game on! like nothing happened.

Today, June 24, 2008, is the last day of Reach the Day: Conquer Childhood Cancer, an event in Washington D.C. to raise awareness for childhood cancer. On June 12, 2008, representatives unanimously passed the Caroline Pryce Walker Conquer Childhood Conquer Childhood Cancer Act of 2008, $150 million over five years for biomedical research.

The act is named after the daughter of Congresswoman Pryce, who died at age nine of neuroblastoma in 1999.

cbpic1.jpgBack to the celebrating—we’ll be doing it with cakes and cupcakes and pop (Graydon is too young for the bubbly yet). And down in Massachusetts, Hunter turned 6 years old yesterday, and goes off treatment today, June 24, the same day as Graydon. Hunter was diagnosed with ALL at the age of 18 months, and went off-treatment in January 2006. She had a short two months of no chemo, when she relapsed in her spinal fluid in March, and back on the chemo and radiation she went. She is a beautiful little girl, with an amazing mum: feel free to read about her on her CaringBridge site, check out the year in photos her mum put together and leave a message if you like! Then if you’re really in the mood, click over to Graydon’s site and say hello and congrats. You don’t have to worry about being a stranger—in the cancer world, every message of encouragement is appreciated. And we’ll toast Hunter and Graydon together, joined by a date on the calendar and a cancer-free future.

Hey! A big treat Thursday: Mom-to-be web editor Helen guest blogs here about her own trip to parenthood . . . it’s coming quicker than she thinks! Be sure to check in!

And tomorrow is blog carnival Works-for-me-Wednesday. See you then!


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