When I first heard the name of the illness, honestly the letters wouldn't register. Neuroblastoma. I remember writing that unfamiliar word on my palm and repeating it over and over to memorize it. My child kept saying his stomach hurt, he wasn't eating well, and somehow his complexion had a yellowish tint. After several visits to the neighborhood pediatrician with no clear answer, we finally went to a large hospital, where one test led to another and then came the word: admit him. That day, while packing our bags, I spent ages looking for a single sock I'd misplaced. When your mind goes blank, it's strange how those little things vanish from sight.
Neuroblastoma, they explained, is a childhood cancer that arises from cells of the sympathetic nervous system. It tends to form along the adrenal glands or on either side of the spine, and is relatively common in children under the age of five. Even with the same diagnosis, the way it progresses can differ quite a lot from child to child. Some cases apparently improve on their own, but our child wasn't one of the lucky ones. As we heard the test results, the medical team used the term "high-risk group," and from there the stages were drawn out in a long line: chemotherapy, surgery, and then yet another kind of treatment after that. It wasn't something that ended in one go. That was the first time I truly felt what people mean when they call it a marathon.
Once chemotherapy began, my child's hair started coming away in clumps on the pillow. The first time I saw it, I cried alone in the bathroom. Meanwhile the child himself would touch his own head and laugh, "Mom, I've gone bald," and that easy cheerfulness cut even deeper. His appetite dropped off completely, so he wouldn't even eat the things he used to love, and during the periods when his immune system was low, even a small fever meant rushing to the emergency room in the middle of the night. Hand washing, masks, avoiding crowded places. Our ordinary daily life turned entirely into a list of things to be careful about. Inside the hospital room the caregiver is shut in too, in a way, and there were many days when I didn't see proper sunlight for days on end.
And yet what actually got us through it all wasn't anything grand. The way the medical staff on their rounds called my child's name so warmly, a single cup of instant noodles that another caregiver on the ward handed over without a word, a one-line update that his levels had ticked up a little. It was small things like those that carried us through each day. I kept a separate notebook to write down the test numbers and the names of the medications, because not knowing is frightening, but knowing makes it at least a little less so. It took me a long while to realize it's better to set embarrassment aside and just ask whatever you're wondering, right then and there. And that a caregiver is human too, and sometimes you have to hand over your shift, step outside, and eat a proper meal. If I collapse, I can't protect my child.
Finishing all the treatment didn't mean going straight back to how things were. It took time for his hair to grow back and his cheeks to fill out again, and during the period of going in for regular follow-up scans, my heart was in my throat every time until the results came back. With less stamina than his peers, adjusting to school went slowly too. But if there's one thing our family learned in passing through that slow recovery, it's that getting better comes one step at a time, like a staircase. If he ate one more spoonful today, that was today's success. My child actually taught me how to break joy into small pieces like that and celebrate them.
If anyone standing on a similar path happens to read this, I want to tell you: don't let yourself be scared in advance about everything far down the road. You only have to get through one day's worth at a time. This is just one family's story, not a medical judgment, so for any decisions related to treatment, please be sure to discuss them fully with your attending medical team.