I left off at: "Get your asses to Dell Children's Hospital now." Well, that's not exactly what the doc said but it is what he was saying. So that's what we did.
But before that... I was standing in the kitchen. Julian had had his MRI earlier that morning and I was back at the house, trying to start the packing process. This day was a Tuesday and I only had til Saturday to "vacate" the house. The house I helped plan, paint, tile, whatever. The house in which my new husband and I would start our life together. (That whole marriage-forever-love-promise-disaster all came tumbling down in a loud hurry not even six months after the wedding. Because he's the yellowest-bellied coward I ever met (and went on to marry). Any post you find here about it is TAME compared to how I truly feel about that wretched creature. Ahem, moving on.)
Where are we? Yes! Wandering around, thinking about boxing up the things I hadn't even finished unpacking. I couldn't concentrate, though. I hadn't been able to concentrate for months. Of course, I wrote it all off as the effects of what was becoming a particularly nasty divorce. I had been walking around inside my life with a strong, unshakable feeling that something big and bad was gonna happen. When the hearing for temporary orders happened on that Friday before, February 19th, and it went so terribly, I told myself that the hearing was the bad thing. But the feeling only grew. I had been dragging hard. I'd be walking across campus and get nearly knocked down by this huge thing. I mean, to the observer, I would've looked like some chick with a backpack who'd gone bonkers. I just stopped, mid-step, and wept like never before. It was like gastroenteritis, but of the soul. This happened a couple times before the hearing even happened. What I'm trying to say is that I had an unshakable and unmistakable feeling that something was coming. Have you ever felt this? You can't miss it; you know it if you've ever experienced it. There is no "um..." about it.
Now, let's go back to the kitchen. I had been on the phone with another mom from my son's class. They were to be released early that day due to the snow. I missed the pediatrician during that call. He left a message. He didn't say anything other than he had the MRI study and to give him a call back. But I knew. I knew he had hard news to give me; that there was some shit on that MRI. I think I first began howling after I heard his voicemail. I called him, he was out to lunch. I told the answering service lady I couldn't wait an hour to talk to the doc, so, yes--page him. I howled some more. I stopped. I know I was talking to myself, nonsense. I talked myself into pouring a glass of water and almost heaved as soon as the water touched my tongue. Nope. Ok, try doing the dishes. Walk over here. NO, wash the dishes, do something that's not nothing. You can't do nothing so do something. Yeah, it really went like that. Out loud. In my anxiety, some of my extremities and lips went numb. I do that. I actually go numb when I get nervous enough. The phone rang and that conversation is a blur. I remember how solid his voice was, though, and the things he said that will forever be remembered in bold. I imagine his words in the shapes of squares and rectangles, there were no curves on anything he told me. Due to the size of one of the arachnoid cysts, we needed to go in to the hospital. You mean now? Yes. Wait, you said one of.. Yes, there are two, one is large enough to be an immediate concern. They know you're coming, check in at the ER. Howls. More and more howls. For what would be the last time in my life, with only my bag on my shoulder and my phone against my ear, I left that House.
I drove, somehow, to pick Julian up at school. The doc stayed on the phone with me. I opened the door a couple times, thinking I was going to puke. I didn't. But, God, my body reacted. I have never ever in my life been so stretched. I can only try and fail to describe how I felt. Perhaps like an out of body experience endured in my body. When I parked and walked up to the school on my numb legs, I saw Julian's teacher. She knew I was wrecked, I'm sure, by the look on my face. I put my hands on her shoulders when I told her they'd found a big cyst and we had to go right then, partly for physical balance and partly because I needed for someone else to share the gravity of the news with me, immediately. I was buckling hard under the knowledge and the solitude. We were standing in a crowd of happy, goofy elementary kids running around in their afterschool freedom. Over her shoulder, I saw Julian laughing with one of his friends and another wave hit me. She took me to a conference room where I tried to reach Julian's dad who was vacationing in Brazil. No luck, he was out on a boat, no way to reach him. I had already called my mom and Julian's paternal grandparents. They were coming from San Antonio. I remember the snow so clearly that day. It delighted me that morning driving Julian to school but now it was surreal and gross. Don't snow today, don't snow. Be like a regular day, don't be special. Stop fucking snowing.
That was the most difficult car ride of my life. I started out in the backseat to sit with Julian, to whom I was explaining in super kid-friendly ways, that we were gonna go see a doctor who was going to free him of this kind of water balloon just inside his noggin that was crowding his noodles. I gave them personalities, his brain and the cyst. I sort of acted out a kind of "hey, man, quit pushin' on me" mime for him. He giggled. God, love hurts unbearably sometimes. I wanted to hold him and wrap around him. I wanted to swallow him whole and put him back inside my body where I could feel like he was safe. When I couldn't bear either my mind or my body any longer, we pulled over and rearranged. I had to drive to DO something. I couldn't sit and chat with Julian anymore. I was such a wreck.
We finally got to the ER and I gave the nice lady Julian's name. Someone came and got us straight away. We hung out in a room and Julian was looked at and talked to by a few different docs. I met the neurosurgeon and we sat down to look at his MRI together. Now see, I'm completely untrained; I'm only Dr. Mom, but when I saw those images... I choked back once again the urge to hurl and I asked the doctor quite simply "Does he have a whole brain?" That's how big the dark area on the scan was. I mean, from certain angles, it looked like he had more cyst than brain. The doctor assured me that he does indeed have his whole brain. This cyst almost certainly developed in utero and grew ever so slowly since. That's the only explanation that is possible. A cyst that size could not have grown rapidly without symptoms. Dr. Lee (our surgeon) was amazed Julian didn't have any of the common symptoms that go along with something like that. But he said that with it's size it was going to start causing serious trouble at any time. That was the reason for the rush. We would have surgery the following day. He'd have a craniotomy on the left side where the doc would drain and fenestrate the cyst. That means they essentially shred and remove as much of the cyst's membrane as possible. The more membrane you remove, the lesser the chance of regrowth. If he found a safe entryway across the midline of the brain, he'd cross it and drain the smaller cyst Julian had in the right side of the skull. I agreed to this, repeating that it was only if he felt quite safe crossing that midline. Oh, and the midline. Not in the middle at all. My poor Junebug. I later found out that his cyst was the biggest they've seen at Dell so far. It was grapefruit-sized. Go look at a grapefruit. Yeah.
I know I asked him a slew of questions and he sat with me and slowly answered every one with lots of eye contact. When I got quiet, he asked me if I had any other questions. I shook my head, but I'm sure my face asked the only question I really cared about: Are you gonna do this right? Can you do this? He responded to the desperation he saw and said, "I've been doing this a long time and I'm a dad. I have four kids." And then he nodded. I had entered an arena in which I had zero control. I handed my trust and my boy over to this surgeon. He is a remarkable one, at that. Tremendously competent with bedside manner that makes you love him almost instantly. Dr. Mark Lee. God forbid you ever need a pediatric neurosurgeon, but should you-- Dr. Mark Lee and Dr. Timothy George at Dell Children's in Austin, Texas.
I'm going to leave us here in the ER for now.
Look, I don't know you but thank you. I'm writing this in such detail because I need to A. get it out and B. feel less alone. I mean, Julian completely aside, the experience I had mentally, emotionally, physically just in the time between the pedi's voicemail and actually arriving at the ER... I really physically felt like I was going to die. It was so intense. And there is so much more to tell before the story is over. (It's actually not over, of course, we are still navigating many things.) But, by the time Julian was released from the hospital, I was overdue for admittance myself. They come every couple hours to treat your kid, scan him, medicate him, but they don't give you one single pill. I don't know how I got through the hospital stay. I've been haunted by the things I saw, things I heard, things I felt. I think this retelling will help me work through it in a different way and wear some of the acute panic off of the memories. So, again, thank you for being at the other end of the tin can phone cord.
Much love,
Blargamel
PS: An arachnoid cyst grows in one of the membranes between brain and skull. This may be oversimplification but do you care? Nah. It's notable because while I was dying that there was something in my kid's skull, I was breathlessly grateful that it was a cyst between the bone and brain and not some tangled, messy thing deep within his brain tissue. Breathlessly grateful.
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