The days leading up to the discovery of Rebecca’s tumor were, in a lot of ways, just as filled with uncertainty as the days after.
On the day before we left for vacation, Rebecca had her hair tightly braided by a professional. We went with tight braids because we were headed to the beach, and we wanted a hairstyle that offered some hope of washing some of the sand off her head. That evening, she complained that she had a headache, so we gave her some ibuprofen and sent her to bed.
Was the tumor already making itself felt, or was it just that her braids hurt her scalp?
The next day, we drove through the Appalachian Mountains on our way to the southern tip of New Jersey. Halfway through the mountains, Rebecca complained that her back hurt, and shortly thereafter threw up pretty thoroughly. We pulled over, washed her and her things down as much as possible, told her to watch out the window for a while, and continued on. After that, she seemed fine, eating normally and fighting with her sister over who got the top bunk in our vacation rental’s second bedroom.
Was the tumor already making itself known, or did she just get car sick?
That night and the next morning, she played on the beach, jumping waves and making sand castles. After lunch, she lay down for a beach nap, and it went much longer than usual—more than three hours. We braced ourselves for a rough bedtime, but instead she threw up a couple of times that evening and complained of a headache and sore throat. Kat took her to an urgent care center, where a rapid test for strep throat came up positive.
Was the tumor already affecting her, or did she just have strep throat?
Given her symptoms and the test result, the urgent care staff prescribed antibiotics and sent her on. Rebecca came back to the apartment and fell asleep almost immediately. The next morning, she still felt sick, so she lay in bed and ran to the bathroom a few times to throw up, usually just after she took her antibiotics. By that evening, she was sufficiently dehydrated that Kat took her to the emergency room to be evaluated and rehydrated. So Rebecca was evaluated and rehydrated, given some anti-nausea medication, and sent home.
Was the tumor already sickening her, or was she just having a reaction to the antibiotic and/or the anti-nausea medication?
The next day Rebecca was increasingly lethargic and continuing to throw up. We were feeding her 5mL of Pedialyte by dropper every five minutes in an attempt to keep her hydrated and nourished until she got over whatever was sickening her—we’d started to wonder if she’d caught a virus to go along with her strep throat, as there are several with those symptoms making the rounds—and could start eating food again. This continued through the day and all through the night. Every few hours, just as we started thinking that she’d turned a corner, she’d throw up whatever we’d gotten into her. Past midnight, she started complaining of a headache just before throwing up. I asked her about common migraine symptoms, none of which she had. Occasionally, as she lay limp in my lap, her limbs would twitch once, the way they sometimes do when you’re falling asleep.
Was the tumor already disrupting her brain, or was she just exhausted from the vomiting and lack of consistent sleep?
By morning, we decided to switch her to a different antibiotic. We were guessing, grasping at straws, feeling more uneasily concerned, but not knowing what else made sense to try. I went to pick the new prescription up from the pharmacy. While I was gone Rebecca threw up more than her stomach should have contained, and did so repeatedly. Before each bout of vomiting, she would grab her head and writhe on the floor in pain. Before I had returned, Kat knew that Rebecca had to go back to the emergency room.
So we went, and Rebecca sat listlessly in a chair with a bucket in her lap. Eventually we were taken back, and Rebecca was hooked up to intravenous saline and anti-nausea medication. It seemed to help, but she wasn’t getting any more energetic. We sat there with her all afternoon, getting sympathetic looks from other patients and their families. “Such a little angel, it’s a shame to see her here. I hope she’ll feel better soon,” one said. Around 5:20pm, I left to reclaim our other children from the day sitter we’d hired.
Just before 6:00pm, Rebecca had a seizure. She came out of it and was rushed to the CT scanner. After her scan, I talked to her on the phone, and she sounded really good. Like her old self, perky and mischievous, better than she had in days. We said “love you” to each other and hung up.
Five minutes after that, Rebecca went into another, more severe seizure, and didn’t stop. The ER staff broke into the crash cart, administered paralytic drugs, and intubated her to keep her alive. I found out as it happened when I took a call from Kat and the first thing I heard was her sobbing voice calling out, “I love you, baby, Mommy loves you…”
I might have died in that moment from the freezing terror that spiked through my chest.
The CT scan showed a mass. The regional medical center requested a life flight to The Children’s Hospital of Philadelphia.
The total elapsed time from the beginning of that long beach nap to her first seizure was 77 hours.
How little we know, even when we think we know. Rebecca had a sore scalp from her braiding. Rebecca was car sick. Rebecca had strep throat. Rebecca wasn’t tolerating the medication. Rebecca had a virus in addition to strep throat. Every one of these hypotheses fit the available data. Every one of them was reasonable and backed by the assessments of medical professionals, one of whom was her mother.
Yet somewhere in that progression, what we were really seeing was the emerging effects of a brain tumor, the last thing we would ever have suspected. Where was that line crossed? Which of the complaints were what they appeared to be, and which were the zebra-striped thestral of a tumor disguised as an ordinary pony?
We’ll never know, any more than we really knew what we were seeing as it happened. I have my suspicion, as the title of this post suggests, but I’m going on instinct and hindsight-double-guessing. I could be wrong. Maybe it was when she complained about her braids. Maybe it was months ago, when her usual fiery stubbornness intensified, something we put down to developmental appropriateness. Maybe it was halfway through the vomiting period, with that effort spiking her intracranial pressure in a such a way that it shifted the tumor into a blocking position, causing the pressure to continue to build and build until she started seizing.
We don’t know. We never know.