We moved. Again. Down the road a couple miles to a completely different world where the house is smaller but feels like home. The neighbors on both sides have introduced themselves, and our commutes have been slashed by at least half the time, miles, and gasoline. Normal...Maybe we just moved a little closer to normal.
It's been a long, long time since I've felt my feet touching the ground, known up from down, or been able to see the details of a day with clarity. I've described my life since Nick got sick as feeling like I'm caught in a wave, one that grabbed me and kept me spinning until I couldn't tell ocean floor from surface and sky. As I emerged from the wave, I still felt that after the dizzy dance spinning blur. No longer delirious but not quite able to bring my scenery into focus. That's getting better. Slowly. Better.
The longer Nick stays healthy, the easier it is to forget. Like childbirth...I know it hurt, but I can't quite recall the intensity, the exact ache, or the sharp pangs that stripped my self control. My memories shift from realism to impressionism over time, and the clarity and control I once took for granted return to my grasp.
Cancer isn't as easy as childbirth to put away and forget...People, babies and children, are still fighting cancer every day. Nick could relapse, and we could join that fight again. Cancer remission or even "cure" isn't as final as other traumatic events because it's so good at finding ways to creep back in when you least expect it. Relapse. That's what it's called when the primary cancer returns, and there is currently no cure for relapsed medulloblastoma (Nick's cancer).
A boy, a year or so older than Nick, was diagnosed with medulloblastoma right after Nick. His tumor was smaller than Nick's--Just the size of a walnut vs. the Nick's "small orange." They went through the same treatment protocol at the same time. We saw this boy in audiology while they waited to get their hearing tested. We saw this boy in the waiting room at clinic while his mom tutored him. We admired this boy when we heard that his Make A Wish was to build a playground for the kids in his neighborhood instead of using that wish for something more selfish. As Nick finished treatment and passed his first, then his second post-treatment MRI with clear results...As we prepared for Nick's first post-treatment Christmas...As we complained about real estate troubles and financial woes...This boy relapsed. He started treatment again. We watched him on Facebook, saw his soft brown eyes and serious expression honored for hours and hours of time spent gathering donations and packing bags, so he could deliver healthy snack bags to other patients at Rady's. There was a fundraising walk. Rewards and awards. Sports teams. Corporations. News stories and interviews. He lost his hair again in this second round of treatment, but his stoic expression never waivered. His work ethic never faltered. Our admiration grew. But so did the cancer, and this sweet 12 year old passed away yesterday.
Despite knowing there is no cure for his relapse, I somehow lived in the delusion that his good deeds shielded him from death...believed that he might be the one exception...And if he could survive, maybe Nick could if he relapsed, too. His death is the needle in that dream balloon, and I am angry and hurt and scared and sad and disappointed. I try not to ask "why?" very often, but I want to know...Why him? Why not Nick? What is Nick meant to do? What am I meant to do? If we are spared, for now, what are we supposed to be accomplishing to deserve that gift?
People rant on Facebook. Talented filmmakers create moving documentaries. Musicians write songs. Telethons plead with the nation on tv. But childhood cancer research is still under-funded. What do we need to do? What do we need to show? To say? To make change and find cures?
These are real kids. These are not aliens. They are not actors. Yesterday, they had curls framing their chubby faces, eyelashes batting around their big eyes, strong muscles peddling bicycles and throwing balls...Just like your kids. Just like your nieces and nephews and grandchildren. Their parents love them and dream for them and plan for their futures. Their parents hold them and love them and kiss their foreheads as they sleep...Just like you. The cancer and the chemo and the radiation make them bald or crippled...unable to eat on their own or walk on their own...their faces swollen beyond recognition from steroids...They are not freaks that belong to "somebody else." They are loved. They are babies. They could be yours, and this could be your life.
When you see a telethon, donate. When you can offer support to a family in crisis with cancer, offer it. Sign petitions. Share Facebook posts. Walk in the 5k's or donate to those who are. Please don't ignore our stories. Please don't ignore our kids.
I didn't mean for this to be a PSA or a soapbox lecture, but we do need help raising awareness and raising funds for research. The world can't afford to lose any more awesome kids to cancer.
Thank God we have Nick to hold close tonight. Thank God we are blessed with this opportunity to move forward with our plans and our dreams...for now. I pray we are worthy. I pray for guidance moving forward with our lives, and I pray for peace for the kids in treatment and the families grieving losses. And I pray we find a way to cure and prevent this serial killer...soon.
