Hurricanes in the Brain – Part I

This past week has completely, totally sucked.

I’m sorry; I don’t have any more eloquent or insightful way to put it. Really, it has been awful. And not because we lost power or our house was flooded or destroyed — and my heart goes out to those for whom this was the case, truly; For a whole lot of people this past week has totally sucked.

No, here’s the Hurricane-less story of why this week will go down in the history book of my life as one of the worst ever. (Part 1 of 2):

Last Sunday morning — October 28th, that is — the girls woke up at around 7:30 a.m. (they slept in!) and I told them they could go downstairs and watch some TV, while I caught a little extra shut-eye. We’ve done this on Saturdays and Sundays for the past few months, since the girls have figured out how to use the remote.

I couldn’t fall back asleep, though, so instead I got up and checked email, looked at the weather report to see the latest on Sandy, and then started Googling sugar cookie icing recipes — I was planning to make pumpkin-shaped sugar cookies with the girls.

Alastair, meanwhile, was in New York for a gig. About to leave his parents’ house in the ‘burbs for Manhattan at that very moment. (Tribeca, pre-inundation.)

Around 8:15 or so, I finally went downstairs. The girls were lounging in their usual spots on the couch — Elsa on the right, Clio on the left. I said, “Good morning, my little chickadees,” or something along those lines. Elsa, per usual, was totally zoned out, staring at the TV. But Clio — Clio was not watching TV. She was ticking.

This is the word that keeps coming to mind when I think about it: Ticking. Her eyes were flicking backward in her head, her right arm (or maybe it was her left?) was jerking up and down, and she was drooling from the corner of her mouth.

I ran to her and said her name. No answer. Louder and more desperate. No response. I felt in front of her nose, put my hand on her chest —  to make sure she was breathing, or her heart was beating, or something. I moved the pillows she was propped on away and moved her so she was lying flat on the couch. I looked to make sure she wasn’t biting down on her tongue.

What are you supposed to do when someone is having a seizure? I had no idea. None. Except to call 911. And tell Elsa to go upstairs and get dressed, now. (“What’s wrong?” “It’s an emergency,” I said. “She’s having a seizure.” Not that Elsa knew what a seizure was. “Just go get dressed and get your shoes on, now.”)

I ran to my purse for my phone. Goddam iPhone. So many steps: Press the home button, slide it to on, press the home button again to get out of whatever app I’d used last, press the phone button, press the keypad, dial, enter. My fingers fumbled on the numbers, I pressed delete instead of call, I flung the thing down and ran for our land line in the kitchen. We almost never use it, but I thank God we have it. (We would use it again for the same purpose four days later.)

I think I sounded like that lady in the “I’ve fallen, and I can’t get up!” commercial when I told them my daughter was having a seizure. Or some bad TV drama. My voice was shaking and I was crying and telling them about leukemia and chemo, I asked what do I do, and the woman said to stay on the line, make sure she’s somewhere where she can’t fall, then unlock the door for the EMTs.

They were there so damned fast, I couldn’t believe it. We live literally a block away from a fire station, and I thank God for this. The relief, the relief, the sheer relief of having them come in, give her oxygen, do whatever it is they did.  I think they put an IV in. I think they gave her Atavan. I asked if I should go get dressed. “If you want to ride in the ambulance with her.” (As if I would want to do anything else?!)

Tore clothes out of the drawers. (“Are you dressed Elsa? Are you dressed?” “Yes! I’m getting dressed as fast as I can!” “OK, it’s OK, everything’s OK. Clio and I just have to go to the hospital.”) Grabbed my meds — the only thing I knew I absolutely needed — threw them and a pair of pajamas into Clio’s bag, already packed. Was running around like a maniac. Grabbed the notebook with all her medical info. Came downstairs then tripped back up stairs to get my phone charger. (?!)

They were carrying her out by then. Told Elsa to go across the street to a neighbor’s house (had to think fast: which neighbor? Settled on the woman across the street whose granddaughter visits and the girls play with sometimes. Thank God for being in a neighborhood where we know and are friendly with the neighbors; we have so little in common with most of them, but they all know about Clio’s situation.) A boyish-looking, chipper emergency worker — too chipper for the occasion, if you ask me — brought her over.

I know, I know, too many tiny details. I’m sorry; this is for me, too.

Off we went. Sirens this time, unlike the ambulance ride I took with Clio four months ago the day she went from the local ER after a high fever to the city hospital for her (and our) official admission to Cancerland. And this time, she wasn’t conscious. But she’d stopped ticking — and then she started again. There were two very calm, very competent-seeming paramedics in the back with her. Both women. Appropriately un-chipper, which, strangely, I found comforting.

I was scared, God knows. But calmer than I had been; we were on our way to Children’s and we’d see our doctors, they knew her case, and had her records and were ready for this — Clio had had those seizure-ish episodes back in August the last time she’d gotten Methotrexate.

The seizure would stop, she’d wake up, get admitted, and there would be tests and new medications. I called Alastair in the ambulance and told him what was happening, and even said he could go ahead with his gig if he wanted (although I knew he wouldn’t want to).

I didn’t expect there to be a big team of doctors and nurses waiting when we got to the ER. I didn’t expect it to look and feel like a TV show. (“No, it’s not trauma,” I overheard someone say to someone else on their way in, “but [something indicating it was a serious situation; I forget]”) I didn’t expect a social worker to show up to be there with me and ask if I needed anything.

I told her no, then thought better of it a few minutes later and asked for something to eat, because I hadn’t eaten yet and knew that if I didn’t have something I might faint. They brought me a juice box and a packet of graham crackers. (Pediatric hospital, remember.) I asked for a chair.

I watched them take Clio’s clothes off, and then put a diaper on her. I watched them put in another IV. They kept an oxygen mask over her face. They put respiratory monitor patches and a pulse-ox on her. The fussing and monitoring went on for some time. She was still unconscious. She started seizing again — the arm ticking.

There were two senior doctors on the scene — one a tall bearded guy (Drosselmeyer-esque) in a white coat who kept telling me what was going on. He had a calm, almost bemused manner, and stayed at the fringe of things, hand on his chin, leaning in and telling me things in a low voice — almost like we were watching a sport whose rules I didn’t quite understand, and he was my guide. (“They’re giving her some oxygen, but she seems to be breathing all right on her own…now they’re giving her some medications, to help stop the seizures..some antibiotics….we’ll need to do a CT scan to make sure there’s no internal bleeding….any idea how her platelet count is right now?”)

Meanwhile, Alastair was texting me, asking what was happening. I called him, told him what I could. Said I’d call back soon.

And then they told me Clio wasn’t breathing well on her own. They might have to put a breathing tube in. And, a minute or so later, yes, they said, they did. Too much CO2 in her blood. Here’s a consent form for the breathing tube. (Would anyone not sign it?)

The social worker brought me her little clothes, folded. Her wet underwear tucked inside.

This was the point at which the real fears came in — the unspeakables, unthinkables. Was she technically in a coma? Was this prolonged seizing or lack of oxygen causing brain damage? Could we lose her? Had all this treatment we’ve been doing been moot? Was going to end here, with a complication?

I couldn’t bring myself to say “coma” and I can’t remember what, exactly, I asked the doctor — not the bemused White Coat one but the more involved one, the one in scrubs, in the room with Clio, who stood behind the residents and fellows at work, with his arms across his chest, looking concerned, occasionally giving instructions — but I remember him replying, “well, it’s a serious situation.”

I asked the White Coat doctor to call Alastair. Tell him what was happening. I couldn’t do it.

I decided to go into the room with Clio now; stood beside her and touched her leg, then felt like I was in the way, and sat down — the social worker brought my chair in for me. I needed my chair. I sipped the juice box they’d brought me. Nibbled a graham cracker. Not because I was hungry or thirsty; but because I knew I couldn’t let myself faint.

White coat doctor came back in. “Well, your husband called me babe.” He smiled. (Alastair had thought it was me when he answered his phone.) I must have smiled back.

“You’re a very calm person,” the doctor said.

“Am I? I guess have to be,” I said. “For her.” (As if she’d know the difference. Unconscious, drugged up, not breathing on her own.)

Speaking of calm: You know what’s weird? How doctors and nurses (although it tends to be the doctors, especially the men, I find) can be so casual and even jokey with each other while they wheel your kid on a gurney from the Emergency Department up to the ICU. (Oops, watch out for the corners. Not enough coffee yet, huh? Hold the elevator! Coming through. Seven please. Thanks!)

I guess if Clio was still in immediate danger she’d still be in the emergency room. (They’d done the CT scan; she wasn’t bleeding, swelling, any of that.) Still, I didn’t know if, when they took the tube out, she’d breathe on her own. I didn’t know if she’d still be herself when she woke up.

If you’ve never been inside a pediatric ICU, I recommend that you keep it that way unless absolutely necessary. This is not a happy place. Inside every glass-walled room is a kid who is not doing well. Some are trauma victims, some are gravely ill, some are in comas and some will never wake up. Some of them have been there for months and months.

The rooms are spartan and filled with many more machines than a regular hospital room. The bed is smack in the middle like an operating table. Our room didn’t have an attached bathroom, no tray table, no chair for a parent or visitor.

And because most kids in the ICU don’t need the normal sort of company and care parents typically provide in a regular hospital room, there is a “family lounge” where parents and others can hang out.

I went there to find the refrigerator at one point, to see if there was any juice or water or anything (I knew there would be no Shasta — sigh) and the room was packed. It felt more like a family gathering than a waiting room — people were talking and laughing, the Pats game was on, a crock pot bubbled on a counter, a burly, blue-collar-looking guy was playing checkers with an Amish man.

A motherly, middle aged woman saw me looking lost and said, “Can I help you find something, hon?” I mumbled that I was just looking around. (I looked inside the fridge; it was packed with people’s food.) And I got the hell out of there. This was not a club I wanted to join.

Better to sit in the cold room with Clio — even though she wasn’t fully there. Breathing tube in the corner of her mouth, tongue protruding, eyes not quite fully closed. They had to tie her hands down in the event that she woke up at all, because her first instinct would be to pull out the breathing tube. It was so hard to see her like this. So hard, so hard.

But I really did feel confident that we were in the best possible hands. I was so impressed with the doctors, the nurses, the efficiency, the communication. Not an hour after we’d gotten to the ICU I’d talked to someone from oncology, someone from neurology, a social worker, probably a lion tamer and an astrologist, too. Our primary oncologist had been notified and was in the loop. I asked questions, I listened, gave them background details and information.

Two of the doctors asked if I was in medicine, because, they said, I seemed so knowledgeable. (I admit it; even in the midst of all this trauma, I was totally psyched about this.) No, I said, I’d just gotten a crash course over the past four months. Plus I’m just wicked, wicked smart.

Alastair arrived late morning, and we spent a long, tense day in the room with Clio, just waiting, waiting, hoping she’d be herself when they let her wake up. Finally that night — after they’d done an MRI and lumbar puncture to test for infection / internal bleeding / whatever else they were testing for, they began to slowly take her off the major sedative she was getting, Propofol (same stuff that killed Michael Jackson) — they removed the breathing tube. And slowly she woke up.

The first word she said (well, croaked, because her throat was raw) was “blanket.” And then, crying soundlessly, “what did they do?” I told her it was a tube to help her breathe. But it was OK now. It was all gone. Mama was here.

It was a rough night. As she gradually came to, she was confused and disoriented and a little bit delirious. She was fixated on where Elsa was, and the order of how things happened. Since the last thing she remembered was being home, watching TV, she kept saying she wanted to watch TV. (“I didn’t get to watch anything!!”) I slept in the bed with her and was basically awake until 2 am while she asked questions, trying to get her to let it go and go to sleep. (She didn’t understand why she had to go to sleep anyway; wasn’t it daytime?)

Shoot. I’m not skipping over the details, am I? I hope you’re skimming.

The first half of the next day was damned hard, too. Now Clio was just pissed. The morning was basically one big epic tantrum — like the kind she used to have when she was two, three years old, and that she has had a few times over the course of the past few months when she’s felt uncomfortable and out of control. She was angry at me for not understanding/listening to her and even called me a blockhead at one point (She’d learned this from a Peanuts video about leukemia; it was hard not to laugh) but at the same time didn’t want me to leave her bed or take my arms from around her.

At the nurse’s urging we left at one point to take a breather in the family lounge. No one else was there, except the big burly man I’d seen playing checkers the day before. We asked who he was here for, and he told us they were about to pull the plug on his granddaughter. And I completely lost it. Just wept. We are so lucky, I said to Alastair, through tears, after the man had left the room.

We are so lucky.

Clio’s mental state and mood improved gradually, and more quickly once we moved out of the ICU and downstairs to the oncology ward — the same one we were in not too many days earlier for Clio’s high dose methotrexate treatment. (The one that we thought was such a breeze. Ha!)

Arriving there felt like coming home. We recognized other patients and parents, the nurses, and had our own room this time, because Clio was still being tested for infections. It felt cozy and warm — especially so as the wind picked up and the rain started outside. A child life specialist brought her — and Elsa, who was visiting at that point — some Halloween activities and cookies to decorate. Alastair had brought Clio’s stuffed giraffe and special  blanket from home, and we set them up on the bed. We got a few movies from the resource room. We hunkered down. I crocheted.

Clio still didn’t want me to leave her side. And now she was weepy and apologetic. (This was a first!) She kept saying she was sorry for hurting my feelings and yelling at me that morning. Kept saying she loved me. It was heartbreaking.

It was even more heartbreaking when she said, “I wish I were you.” I asked her what she meant and she said, “So I didn’t have to be in the hospital.”

I told her I’d trade with her in a second if I could.

We were discharged on Wednesday afternoon — Clio and Alastair trick or treated through the hospital in the morning! — once all the tests for infection came back negative and it was clear that she was completely stabilized; no further seizures. She’s on anti-seizure medication now, and will be for the remainder of her treatment.

The verdict is that it was the Methotrexate that caused the seizure — specifically the double dose she got both via LP (lumbar puncture) and then via IV in a high dose. 5% of kids apparently have seizures with Methotrexate, so we are part of the privileged few.

Her treatment protocol is going to change significantly; she won’t have any more high dose methotrexate, though she will still have to get it by LP. Which is scary. But hopefully the anti-seizure drugs will cover it. And hopefully we will never have to go through the hell of a scary-ass emergency room visit and/or ICU stay again.

She’s doing great now. She’s back to her regular self. The meds may be making her a little irritable; hard to say. But so far so good.

As for me…well. I haven’t fully recovered.  I’ll cover that in part II of this post, to be written later this week, because I’m not ready to write about it yet, and I’m sure you’ve read enough of me for one day.

But let me close with this: Another cancer mom whom I told about this recent occurrence articulated so clearly why this incident was so difficult and so awful, and I think / hope she won’t mind if I quote her email here:

“You have walked up to the edge and stared over a cliff into an abyss that you and I would never wish for any parent. At first you think a cancer diagnosis is the worst day, the worst news, you can ever hear. If such events as the ones you have just overcome then happen, it raises the stakes in terms of what you know is possible … and even if you knew it before, intellectually, now you know it inside your bones and heart in a more visceral way.”

Yes, exactly.

Stay tuned for Part II — in which the other shoe (mine) drops.