What a weekend.
Friday Jack had chemo – the last round before the two-year-long, final maintenance phase. The clinic been giving him increasing doses of Vincristine and Methotrexate at each visit, and the treatment hit him pretty hard. He battled nausea, fatigue, and a lack of appetite this time around, when usually it barely slows him down. He came home from his dad’s on Saturday morning, and he was still not feeling great, so we settled in for a low key day with plenty of couch-surfing and a bit of crafting.
Prior to going to sleep that night, he told me, “Mom, I’m glad you don’t have cancer.”
“Me, too, honey. I really wish that you didn’t have cancer, either. It’s not fair at all. I’m sorry.”
That night, for the first time since the days leading up to his Leukemia diagnosis back in January, Jack had a night terror. If you haven’t experienced these before, consider yourself lucky! When they happened back in January, I seriously thought he was having a seizure. This one was similar – Jack yelled out, cried, thrashed, sat upright and babbled mostly incoherently with his eyes wide open. He was obviously terrified and shook and moaned through clenched teeth. That was hard enough to watch, and then I made out his words,
“It’s not my time!”
My heart stopped and I went cold with horror. Tears filled my eyes. Memories of January and the cancer diagnosis unfolding came back to me. I was terrified.
I shooshed him and smoothed the little hair he has on his head as his eyes fluttered closed and he fell into a more peaceful sleep. I cried and I worried and then I steeled myself and went back to watching a movie on the couch with David. Neither of us mentioned Jack’s words.
The next day, Jack didn’t remember having bad dreams at all. He never does.
Sunday was another low key day spent close to home, but Jack seemed to feel even worse. He ate two bites of a waffle in the morning, then downed two large glasses of instant breakfast. Then he asked for water. He sucked down liquids all day and complained of being cold. I was watching and worrying. At lunch he ate two bites of his sandwich, and then said he was full. He was SO THIRSTY, though. More water, more milk. He laid on my lap on the couch and we cuddled. When he got an attack of the chills, I took his temperature and saw that it was 99 degrees. Not a fever, not dangerous, but worrisome for a kid with Leukemia.
I decided to give the pediatric oncologist a call. I wanted reassurance. Instead, the oncologist (albeit calmly) told me that I should keep taking his temperature and watch for it to hit 101.5, then call her when it reached that point. He would need to go to the ER if it hit that. And then she said, “I’ll probably talk to you later. I’m almost sure he’ll hit that. Maybe not, but probably.”
To my credit (and pride) I didn’t panic. Instead I started cleaning. I did dishes, laundry, took out the garbage, packed a bag for an overnight stay – all just in case we might be looking at a hospital admittance (standard procedure if the fever doesn’t break or an infection is present). I took Jack’s temperature every 10 minutes or so. It crept up to 100.8 then down again. Then up again.
At one point he complained of pain in his sides – what seemed to be his kidney area – and then laid on the couch and fell asleep. That’s when I started to worry about relapse. This was the only fever he’d had since his diagnosis. Combined with his complaints of pain and the previous evening’s night terror, I was afraid. About an hour into his nap, I checked his temperature again and it was 101.5. David said, “Are you sure? Maybe you should check again!” I did and it was 101.6. “Time to go to the ER!” I announced.
I called the doc to let her know we were headed in, and she said she would let the hospital know. We hurried to the ER, where we ended up spending over three hours. Jack’s temperature had gone down by the time we got there, but they wanted to run blood tests and a urine test to check for infection. It took forever, as things in the ER do. We got a dose of antibiotics, were told there were no signs of an infection, and sent home with instructions to call the clinic in the morning for an appointment to get another dose of antibiotics.
Next day, Jack was fine. “Sometimes kids just get fevers and there’s no discernible cause. You just have to take precautions when it’s a kid with cancer,” the clinic nurse told me.
We got home and that’s when I lost the thread of control I had keeping me together. The stress, the worry, and the feeling of being completely overwhelmed by the responsibility of caring for a kid with cancer poured over me. I cried, I raged inside, I lashed out a bit at David, and, finally, I got a glass of wine and hid in my bedroom playing games on Facebook and ignoring my family. The repetitiveness of CastleVille calmed me, as did listening to David feeding Jack a big dinner (he had gotten his appetite back) and explaining that “Mom is stressed.” After a while, I emerged and was able to return to life again.
I didn’t feel strong that day – I felt very, very afraid. There is strength in knowing your weakness, though. I did what I had to do for the child I love more than life itself, and then I hid in my safe place until I could control my fears in front of him.
Cancer or no cancer, life must go on. It’s my job as his mom to demonstrate that for Jack.