A few weeks ago, in between Toby’s morning and afternoon radiation treatments, we went to the Sony Wonder Lab in midtown Manhattan. Toby’s eyelashes were just starting to grow in, giving his eyes the slightest dark rim, as if they were lined with makeup. For the first time in many, many months there was definition and softness to his face; he looked pretty and felt pretty good. No nausea yet from the radiation to his neck and abdomen. No pain from injections or infusions. No hives. A little tiredness perhaps, but nothing we couldn’t handle.
We waited for a long time with the tourists and day-trippers, finally entering the sardine-packed elevator. Toby wanted to push the buttons, and stood near the door. A little girl, maybe 6 years old, stared at Toby and asked her father in Hebrew, “Why is that boy bald?” The dad glanced in our direction, assumed that we weren’t members of the tribe, and confidently told his daughter, “He has lice, and his parents had to shave his head.”
I found myself in a tight spot. My first thought was to laugh in relief. Lice? Are you kidding me? AS IF. But then the shame and self-righteousness poured down in equal measure. Does Toby look like he has lice? Did I remember to wash behind his ears? Oh God, am I a slacker mom? Whoa. Just who is this idiot anyways? And why is he pontificating to his greasy-haired child about Toby’s lice? Who made him king of enlightened Semitic reasoning? I opened my mouth to set him straight.
And then I remembered that Toby is bald because he has cancer. Cancer so awful that it may kill him. Cancer so aggressive that it has required near-constant vigilance for the last 8 months. Listen honey, he’s bald because an hour ago he was lying naked on his back with chin strapped and restrained, receiving direct high-energy beams of radiation to his neck. And he’s going back for another round at 3:00. We tell him stories through the intercom and he lies perfectly still as the machines rotate around his body. He is a very sick boy. I wanted to say all this, but didn’t. And then I found myself wishing that he had lice.
Since that day Toby finished 14 rounds of radiation to his neck and 24 to his abdomen. We’ve gone through a second cycle of 3F8 antibody treatments, which was similar to the first. I’ve returned to work part-time. And Toby has spent 9 hours at Beansprouts (school!) over the course of 5 days. He’s not bald anymore.
We’ve gone to Powerplay (an indoor playspace) twice, visited wonderful friends in Princeton, been to Fairway (hallelujah!), eaten at Uncle Moe’s, looked at the dinosaurs at the Museum of Natural History and made latkes. Over the last 2 weeks we’ve heard that more than 50 of you baked and packaged cookies, to help fund new treatments for children fighting neuroblastoma. We are so blessed to have a bit of normalcy and such wonderful friends.
This Friday Toby will have an MiBG scan and bone marrows, the first evaluations of whether 3F8 treatments have been effective in chipping away at his disease load. The days leading up to scans are incredibly difficult for us. There’s the very welcome possibility that Toby has less neuroblastoma in his body. There’s an equal chance that the disease is stable or has progressed. We have no way of knowing. And so every day is a battle against fear, uncertainty and what-ifs. Toby complained of eye pain yesterday: It could be nothing or it could be neuroblastoma. He’s been tired and not himself since Saturday… again, it could be delayed effects of radiation, low hemoglobin or cancer.
So when people ask, “How is Toby?” it’s a hard question to answer.
We’re holding on to hope. And we’re glad you’re still checking in.
mooki + stephen
Ed Clark, Christmas Guest
5 months ago