77 HoursPublished 9 years, 9 months past
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.
Beautifully written, painful to think about. You may never know how things started, but I fervently hope they end well.
Good luck to all of you. Fingers crossed for your little girl.
There’s no more helpless feeling than having a sick child. Hope everyone is doing well.
As a parent of a young child, I can sympathize with your intense distress. I am also thankful that you’re writing these posts both from an academic and a “stay vigilant as a parent” perspective. But more than anything, I hope that Rebecca makes a remarkable recovery.
It’s so hard to read this, Eric. I cried. She’s such a doll. I hate to hear that she’s going through this. You guys are amazing. I’m sorry you’re going through this right now.
I am impressed by your ability to keep the car on the road, to even remotely hold it together in such dire circumstances. Truly you are both managing this more calmly and functionally than most any parent in the world ever could. If anyone could have seen this coming, it would have been the two of you. Nothing seems out of the ordinary until the seizures started. Y’all are constantly in my thoughts and prayers, and I’ll come up whenever you need me.
And by the way, the migraine idea was a Zebra. The tumor is a Pterodactyl in downtown Manhattan in 2013. Nature isn’t playing by the rules.
Thank you for these amazing updates. I don’t know how you are doing it. We continue to keep you all in our thoughts. Positive healing energy is sent your way. Hang in there.
Thank you for your updates. My heart goes out to you and your family. We’ll continue to pray for you all.
This reminds me a great deal of C.S. Lewis’ book A Grief Observed. Sometimes stepping outside the situation and trying to wrap your head around even a small part of it helps a person cope. I’m reading, I’m praying, I’m loving you and your family, Eric. Thank you for sharing.
Still praying for you all. X
I’m praying for Rebecca with all my heart. May you and your precious family be comforted by all the love and positive energy pouring your way.
There is a Livestrong Manifesto I want to share with you…it has helped me weather bad times.
We believe in life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is the Lance Armstrong Foundation.
We kick in the moment you’re diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You’re in the fight of your life.
We’re about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that’s what it takes.
We’re about getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It’s your life. You will have it your way.
We’re about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It’s knowing your rights.
It’s your life.
Take no prisoners.
We’re about the fight.
We’re your champion on Capitol Hill. Your advocate with the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is the Lance Armstrong Foundation.
Founded and inspired by one of the toughest cancer survivors on the planet.
Know that your daughter is blessed to have you both as her parents as all of your friends and acquaintances pray for you all. God bless your little Rebecca. May she be well.
You are in my thoughts. Always in my thoughts.
I can’t for the life of me understand how you manage to write these blog posts but understand your need to try to get to grips with the situation. As a father of three small children, these posts fills me with horror, twists my guts and makes me want to flee, far, far away to some place where this doesn’t happen. Unrealistic, unfortunately, but in one way, I believe you are as close to that place as is currently possible. Keep your faith in the trained professionals who now do their utmost to get you all through this in as good shape as possible.
I wish for you and everyone else in similar situations to come through, stronger, healthier and happier. I’ll be thinking of you and your family.
what a heart-breaking read… I can only imagine how difficult this worrying time is for all of you. Poor Rebecca ~ she’s too young for this, my heart goes out to her and all of you.
Wishing you all only the best in the world and sending you my most positive thoughts.
Lots of love & hugs to you.
I missed your earlier posts, but read it just now. Best of luck in the difficult times ahead, and do write an update from time to time – if you can stand it.
But from your last tweets it seems as if there is some improvement. Let’s hope that keeps up.
Thinking of you and your family…
How could you have known? Except that I knew those could possibly be progressive symptoms of a brain tumor (because a close friend had one, and his and Rebecca’s symptoms were remarkably similar), I would have done the same as you. I don’t think there’s anything you should have done differently.
I’m happy she’s in a good PICU; Children’s in Akron is equally great.
Praying for a quick recovery so you all can travel home soon.
So sorry you are going through this. You and your family are in our thoughts and prayers.
I don’t even know what to say…my words seem empty after reading how beautifully your words painted what must have been such an excruciating experience. My thoughts and prayers are with you all.
Thank you for sharing this remarkable composition, considering the duress you and Kat are under. Your words help embody every self-diagnosing, second-guessing parent’s unspoken fears. Your family has been in my thoughts every one of those 77 hours and counting. Still hoping for the very best.
Wow. Praying for Rebecca and your whole family.
God give you strength and endurance and help Rebecca recover fully. I pray for you.
I don’t know you any more than just by watching your work over many years; but, I do know the problem and the issues.
What I see you going through is most often done by less web/media savvy fathers in a much less verbal, more silent and stoically private manner; the “second guessing”, “what did I miss,” “have I failed as a protector” kind of self-talk. The skilled writer/public person that you are makes it easy for all of us to follow and commiserate; but we realize that no matter how we all try, or wish we could interact, the journey you are on is intensely inward and unique — despite the fact that almost no father escapes this life without going through pretty much the same experience in one way or another.
The emotional intensity will diminish daily, the excruciatingly long tunnel eventually reveal some light and the “stages of grief” eventually get transitioned, perhaps without notice.
When we’re ready, what we “do now and tomorrow” become substantially more important than “what happened” and “why.” And, not much else in life showcases the role of two parents, two sets of sensibilities and skills and what “team effort” truly means.
Life struggles are surprisingly universal – solutions are excruciatingly unique.
We appreciate you sharing, understand if you don’t, and truly long for the best for your family.
I’m late to this particular saga and a complete stranger to boot, but I’d just like to say that your story fills me with horror and terror, and I can’t imagine what you and your family are going through. My thoughts are with Rebecca and I fervently hope she recovers well. Good luck, Eric.
We are thinking of Rebecca and your beautiful family! Our prayers are with you all!