Walk

During the year that hospital became home, Toby spent most of his waking hours in bed. Moving was difficult. So we used a wheelchair to get to surgery, radiation and countless middle-of-the-night emergency scans. And we carried Toby everywhere else: to the bathroom and the IV room, to look out the window as the world spun madly on. And we cried as his body withered, his little bones pushing through skin.

He was 4 years old, the age when children laugh and run like wildfire. He could not walk more than a few steps.

When Toby returned to kindergarten, we pushed him to Henry Street in a stroller. High dose chemotherapy had destroyed his blood counts, immune system, and stamina. Over the course of 6 months we wore out two maclarens while weathering the disapproving glances of those who thought he looked too old for a stroller.

After a year Toby began to walk again.

At first he could only manage half a block, but we learned to scope out places to rest. Soon he could string together a path of steps to the front door.

This Saturday Toby will walk 4.5 miles in Central Park with his brother Yoni and friends, to raise money for pediatric cancer research. He will walk for the ones who still battle and for the children we have lost. A chain of steps for Erin, Max, Sam, Erik, Gus, Carter, Jack, Ellie, Courtney, Austin, Santi, Christi, Eden, Emily, Lucas, Penelope, Nathan, Kendall, Spencer, Pierce, Sydney, Brody, Katie, Xinxin and sadly, many, many more.

If you live in the New York area and would like to walk with Toby, please visit kids walk for kids with cancer for more information. We would love to see you! If you can't make it please consider sponsoring Toby. His fundraising page is here.

Thank you for being with us on this journey.



Love,
mooki

5 children

When I started this blog almost three years ago, I spent most nights in a pit of fear, adjusting tubes, cleaning vomit and watching my child waste away. In between terror and tears I searched constantly for "neuroblastoma blog" online, in desperate need of finding others like Toby.

I found a boy named Will, who lived in Boston, and through his father's writing discovered Erin, Max, Sam and Erik. These were seasoned neuroblastoma families, with a lot of history and knowledge. The children were at various stages in treatment and the parents carefully and precisely outlined every drug and reaction. Their blogs became my source of news and my worldview. Pretty soon I found myself starting at the beginning and reading each and every post, delighting in Max with long golden curls, following Erin at camp, marvelling at family photos of Sam with his red-headed brothers, putting Erik's words to memory and always circling back to Will, where it all started.

Each of these five children gave me respite, hope, and a sense of belonging. Through their parents' words I was able to string my days together and remain human. I linked to their sites with a sense that these were the children who would make it. How could they not make it? They each lived so large—running, laughing, overcoming every obstacle with pluck, determination and joy.

Will.
Erin.
Max.
Sam.
Erik.

In less than 2 years, four of these five children have died. Sam died today.

This is the beast neuroblastoma. Look on any neuroblastoma child's site, and the links to dead children far outweigh the links to the living. In our world we call them angels and warriors, awful words to describe a reality that should not be. I know this is difficult to read. And probably not the reason you dropped by. I'm sorry. As I wrap my arms around Toby, and virtually around Will, I wish Erin, Max, Erik and Sam were here.

***

One of the first comments to Toby's blog was from a woman who signed her name, "an Angel Mom." I didn't understand the terminology, but after just a few days in the world of cancer, I realized that her son had lost his fight. "Angel" is a word to describe the indescribable, a way of marking a child's passage to something else. I'm so ashamed to admit that I was scared of this woman, and worried that her comment could somehow decrease Toby's chance of beating this disease. Now, almost three years later, I have thankfully grown a little: I'm not scared of people whose children have died. The bigger struggle has become how to dull the pain of overidentification. And how on earth to fathom their pain.

If you can, please visit these children's sites and offer their parents a word of comfort. Thank you.

Love,
mooki