My Fears as the Parent of a Child With Leukemia

Last night, I put my 2-year-old son to sleep as I often do. I turned out the light, turned on the sound machine and arranged all of his many blankets and pillows around him the way that he likes. My son lowered his head and snuggled in. Then suddenly, he shot up in bed and grabbed his forehead. He started to cry. I had no idea why. I didn’t hear him hit his head. I didn’t see anything happen.

And that’s when the thought crossed my mind. What if it’s a tumor? What if my youngest son has cancer, too? How many stories have I heard from other cancer parents that start just like this? “My child was fine, and then he wasn’t.” “My child suddenly experienced a sharp pain in her leg/arm/head/chest, and that was the cancer.”

Now I’ll pause here to say that I know some parents may have these catastrophic thoughts about their children from time to time. The nightmare scenarios. The worst-case possibilities. I know I certainly had these thoughts even before my eldest son was diagnosed with leukemia a few days after his fourth birthday.

I think the difference is I now know cancer isn’t just a nightmare scenario that happens to other families — but not to ours. It has already happened to us. And it could happen again. I know families who have experienced this very thing. It’s out there. Floating in the atmosphere of possibilities. And it haunts me. It claws at me. Like a sticky, translucent spider web I can’t see, but I also can’t quite seem to shake.

Let me reassure you that my 2-year-old immediately calmed down last night, and it was clearly just a bump from the headboard of his toddler bed. But the fear lingered for me a bit. I stayed extra long in his room even after I heard his breathing slow, just watching him sleep.

Things are so good right now for our family. So very good. Our eldest son, now 5 and half years old, is healthy and happy. He’s thriving. His biggest excitement at the moment is the fact that he has his first “wiggly tooth.” He is all aflutter about this. It is, quite simply, adorable. He loves his friends. Loves his Legos. He is obsessed with all things “Star Wars.” He’s a normal little boy who insists on wearing athletic shorts at all times now, even if this means wearing them over his sweatpants on cold days.

Things are so good right now. So very good. And I’m terrified it will not last. I’m terrified there will be a day when we hear that terrible word that I can’t even say out loud without dropping my voice to a whisper. Relapse. It is the ugliest, most hated word in my lexicon right now. Matched only, of course, by cancer.

Right now, my anxiety is calmed by the little chemo pills we crush up every night and administer to our child while he sleeps. It’s a buffer to the cancer. I feel like it protects us from harm, as much as I hate feeding chemicals to our child every single night.

October 2017 will be a joyous time in many ways in our house because it will be the end of my son’s cancer treatment. We will celebrate. We will ring that bell in the clinic with gusto and cry happy tears. It will be wonderful.

It will also be one of the most terrifying days of my life. Our buffer will be gone. There will be nothing to stop the cancer from coming again if that is its will. And relapse for my son means a change in prognosis. It means falling down the rabbit hole of bone marrow transplants, hospitalizations and much more chemo. The very thought of it makes me weak in the knees.

There are times when I worry that I couldn’t survive it. Couldn’t endure it. Oh, I know I would. There would be no choice. But it seems so much harder to go through it all over again. As a dear cancer mom friend told me recently, it can be worse sometimes when you know what to expect.

But this is us right now. We are doing great. We are enjoying life and feeling like the luckiest human beings on the planet.

I didn’t write this post as a pity party. I hope it didn’t seem like that. I think I just needed people to know there’s another side to every picture. We are good, we are happy — yes. But we are also scared out of our minds that our good fortune will run out. That we sometimes feel like we’re operating on borrowed time. I hope this feeling goes away. It would be nice to relax into my beautiful life.

But in the meantime, I have to say that I do feel grateful for these amazing sons of mine every minute of every day. We don’t take anything for granted. That, it seems, has been cancer’s only redeeming gift to us.

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