Two Steps Forward, One Step Back

Once your kid has cancer, your entire life revolves around treatment. You have a weekly clinic visit so they can stick a needle in your son’s chest and draw blood. The clinic is always crowded. You would never have guessed there are that many kids with cancer, but there are, and they’re all waiting to see the same doctors you are.

If you’re lucky, your child’s counts are good. If that’s the case, you can just talk to the care team and then go home. But if he needs plasma or platelets, then you’re going to stay for a few hours while he gets a blood transfusion. He gets a comfy chair, and he gets to watch cartoons, so he doesn’t mind too much.  But your chair isn’t so comfy, and you have to deal with rush hour traffic with a sick kid in the car.

You carry barf bags with you wherever you go now, and you try to make sure you are in your house at 2 o’clock, because that’s when he gets his dose of Ativan, which you have to keep refrigerated. There are so many different nausea meds, and you try all of them. You hate going anywhere in the car, because what if he starts throwing up while you’re driving? And of course, that happens sometimes, so you have to learn how to hold a bucket under his mouth while you’re driving. You’re not often successful, but you have to try.

He’s not eating food by mouth anymore, so you’re giving him nutrients through his nose tube overnight. You stop having family meals together because the smell of the food makes him sick. He panics at even the idea of trying to eat something as simple as applesauce.

The nighttime vomiting is the hardest part. He calls for you at 3 o’clock in the morning, and you sprint down the hallway. Hopefully you get there in time to catch it. Sometimes you’re not so lucky, and he throws up on the sheets or the pajamas.  You’ve never done so much laundry.   

They give you a fridge magnet with all the numbers to call if he has a fever. If it’s over 100.4, you’re supposed to call the number and bring your kid to the hospital no matter what time of day or night. You are most likely going to be making an unexpected stay there for a couple of days or weeks, but it doesn’t really matter because you have a bag full of your clothes in the car all the time now.

This is how it goes for months. If you’re not in the hospital, you’re making plans to go the hospital. And everyone’s great. The doctors, the nurses, your family friends, your friends – they’re all wonderful and concerned, and it’s amazing. You have shirts made with a catchy slogan and talk about how your kid’s a fighter. You and your friends go to the Alex’s Lemonade Stand 5k, and everyone is so supportive.

But you spend a lot of time thinking about what stuffed animals you’re going to bury your child with and what you’re going to say at his funeral. You think about how you’re going to kill yourself if your son dies. But you can’t talk about it with anybody. You act brave for your family, and you act brave for your child, and you never let anyone know how it feels inside. It’s like being eaten by shark and trying to act like it doesn’t hurt at all.

After five rounds of chemotherapy, you get the word the primary tumor has shrunk enough that they can do an operation to remove it. The surgeon seems pretty optimistic, and you’re pretty optimistic at this point too. Treatments have been rough, but your son has been dealing with the treatments like a champ, and he’s been feeling better. Sometimes, he runs through the hospital like he doesn’t have a care in the world.

The surgery is a big success. The surgeon gets almost the entire tumor out, and your son gets out of the recovery ward three days early. You feel like you’re on top of the world. You’ve lived in the Philadelphia area for almost 25 years, and the first time you want to run up the art museum steps and jump around like Rocky Balboa. 

Then your son gets his MIBG scan. The doctor calls you afterwards with the results. They’re not great. They had expected him to be in remission by now, and he’s not there yet. They’re going to have to make some changes to the treatment plan. They reassure you that this can happen, that sometimes the treatment plans go on a lot longer that what they initially expected. You try not to cry, you hug your son, and get ready for yet another stay at the hospital.

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