Day 9

Thursday, August 26, 2010

Nina woke up in a fabulous mood. Now I must take a moment to operationally define fabulous. During the past week the word "fabulous" has taken on a new meaning for me. In addition to the meaning provided by Merriam Webster, throwing a big fat tantrum, complaining, calling names, and outright being a grump is now classified as "fabulous" in my book. You see, all the things that bothered me about parenting I now rejoice in because when Nina is giving me the stink eye or being non-compliant she is my honey-girl, not my terminally ill baby! The spunk, sass, and unwavering iron-clad will that worried me and tested my parenting now blesses me, makes me happy. How quickly things change! I would gladly take a lifetime of bitchiness if only I could have a lifetime with my daughter!

The first words out of Nina's mouth were, "I'm hungry!" The second were, "I'm starving!" The third were, "Give me something to eat!" The girl really needs to win an award for persistence!! Even through her fits, she was still a sweetheart. Intermittently between growls, she'd turn her beautiful face toward me and plant a huge, wet kiss on my lips. How I want to remember the smell, taste, feel of each of those kisses!!

At 9:20am, the radiation nurse came to pick us up. Today would be Nina's first day of radiation. I was ready to get treatment started, although I was worried about how she'd respond. I just didn't want her to suffer from nausea and vomiting. I even found myself bargaining with God, asking that if there had to be a side-effect, that it'd be diarrhea. As I saw it, if she had diarrhea then her issues with constipation (and the pain associated with it) would be eliminated!How strange to be thinking in these terms. I felt like such a freak, weighing which side-effects I'd be willing to live with as if I got the choice!!! The ridiculousness of these thoughts somehow weren't enough to stop them. Oh well! Maybe I really was going nuts! Maybe I was already nuts....locked up in some psych ward, tripping out on some cocktail of heavy meds. Wouldn't that be wonderful!!!! If only that was true!!!

I hadnt' slept much the night before. I kept thinking about what we needed to do to support Teddy, how we should talk to our nieces and nephews, what could I do to manage Nina's constipation, what our holidays would look like, would we even have another set of holidays with Nina, etc. My mind was like a dryer, permanently on, tossing and turning in a vicious, never-ending cycle. I tried to turn it off but it was impossible. There was so much to think about, so many things to plan for but all I wanted to do was lie quietly next to my girl and breathe her in.

On our way down, Nina proclaimed that she wanted blueberry jello. What the queen beckoned for the queen would get! I called my parents and asked them to hunt down some blueberry jello and bring it to the cancer center. They happily took their mission and were off. I had discovered that aside from wanting us to know how much we were loved, what people wanted most was to have a task, a way to help. I completely understood. No one likes feeling helpless but this situation primarily evokes such feelings. Tasks, albeit simple or even minimal, gave everyone around us a sense of purpose. Purpose, in whatever form, be it large or small, triumphs helplessness any day! As such, I had become very good at finding tasks for our families and friends. This in itself was a monumental task for me because I don't like giving up any sense of control. I prefer to do things myself but....those days were over!

We were met in "our room" by "our oncology nurse" Cindy. To help establish some sense of routine and comfort, the cancer center would have us be in the same room every day with the same nurse over the entire course of the treatment. I found this to be very thoughtful and consistent with best practices for family and child-centered treatments. Cindy met us with a delightful smile and began to have us complete paperwork.

Cindy was a sweet, petite woman with dark hair, gorgeous eyes and eyelashes and a very warm smile. She was very quiet and low-key which was perfect for Nina right now. Prior to getting sick, Nina preferred the gregarious, highly animated personalities. Her brother, Teddy, on the contrary, had always preferred the opposite. However, now Nina had become very reticent about new people overall and had grown to prefer the milder and less verbose personalities. I appreciated how quickly Cindy picked up on this and maintained her interactions with Nina to a minimum.  I answered more questions, signed more consent forms, and outlined the events of the previous night. My life had become a never ending exercise in recalling events; at least for now I maintained some degree of lucidity to remember the most salient and important pieces of information.

Within a half hour of our arrival, the anesthesiologist arrived. He was a tall and very friendly man in his early 60s. He proceeded to greet me and Nina with enthusiasm to no avail. The kid was over it! It didn't matter how sweet he tried to be or how clearly he tried to explain what was going on, all the kid saw was a strange man in scrubs. Reflexively she freaked out! When he didn't desist in talking to her, I pounced and explained that although I appreciated his intentions, it was best to not speak to her at all. "Wham, Bam, Thank You Mam" was what I was looking for. The poor guy just looked at me, initially puzzled a bit my directives, but then he smiled and quickly proceeded without any more interaction with Nina! How wonderful to be treated with respect versus contempt. This doctor got it...he understood that I was the mom and the expert on my child. He might be the expert on how much Propophol to give a small child, but I knew my daughter best! This is how the parent-professional relationship in any context should proceed, with mutual respect and coordination.

Collaboratively, we decided to give her some Verced in the room and then stroll her over to the the hallway outside of the room where she'd actually receive treatment. The Verced made her slightly amnesic. Strolling over to the other room wasn't an issue at all. Once we were there, I had her close her eyes as I counted to 100. The propophol had her knocked out before I reached 50. We then wheeled her to the table where she'd actually receive treatment. I picked up her limp body out of the stroller and lay her down on the bed. Something in my chest stung, sending ripples of pain across my entire body. This entire scenario was NOT right. How could I, ROSY FREDEEN, be strolling in my unconscious daughter into a cold, sterile room with a ton of strangers. What was more, how could I leave her here, even for 8 minutes, to have something zap her brain. This couldn't possibly be happening!!!

But happening it was! Cindy must have noticed the growing look of dread spreading across my face because she quickly redirected me out of the room. She enthusiastically noted how perfectly that had gone and how they'd bring her back into the room once the procedure was over. I waited around the corner of the hallway, lingering, making sure I didn't hear her cry out. If I had, I would have bolted to her side. But I didn't. She was out, deep in sleep. I wished I was deep in sleep!!

I walked back to "our" room in a bit of a fog. I found my friend ,Eileen, there waiting for me. By the time I had explained to her what we had done and what they were going to do to her, Cindy and the anesthesiologist came strolling back into the room. They calmly announced that everything had gone "great" and now all we had to do was make sure she woke up and drank and ate without any complications. I don't know why I thought it wouldn't take long for her to recover, but I did and to my surprise it took her a very long time to wake up. In fact, it took almost an hour! No wonder everyone had told us this would take most of our day!

Once Nina did recover, she was an angry little girl. In fact, she was more like an angry little tazmanian devil. Nothing we offered made her happy. She didn't want goldfish, she didn't want water, she didn't want apple juice, she didn't even want the dang jello my parents had found. She just wanted to be pissed off!! Eventually, we were able to coax her into eating a few goldfish crackers and water. This was sufficient for Cindy to be appeased and take us back to the PEDS ward where we completed a few more hours of IV fluids. My parents reluctantly kissed us goodbye. In their eyes I saw my very own pain so I didn't look too closely...but I did hug them tightly!

By the time we got home it was dinner time. Nina gobbled down a hotdog and an assortment of cookies and fruit. Whatever she wanted we provided! All we wanted was to see her happy. No one was happier to have Nina home than Teddy. Within seconds of our arrival he was performing skits to make her smile and laugh. At one point, he announced the arrival of Captain Pink Pants. This ignited the biggest smile we had seen on Nina's face in days! You see, Captain Pink Pants was a super-hero Teddy had invented specifically for sister. Captain Pink Pants didn't have pink pants...but he did have a pink face mask (Nina's hot pink swim cap to be precise) with blue swim goggles over his eyes. Captain Pink Pants jumped, tumbled, and trumpeted his arrival. However, the piece-de-resistence was when CPP announced the commencement of the infamous "booty dance". That was when things got really fun....Teddy started shaking his booty and Nina started laughing, a deep belly laugh. Todd, Eileen and I rejoiced! Our boy was blessing his sister and God was blessing us all!