Pollyanna… and then there’s neuroblastoma

I don’t remember how old I was when I first saw the movie Pollyanna, but I do remember where I was when I watched it. I was at my aunt and uncle’s house, probably in Kent, WA (if I am mistaken, well, just…I don’t know, sue me). I was sitting on the floor in front of the television, my whole mind and heart wrapped up in this lovely movie. The Glad Game? What is that? It was a new concept to me, and at first, I wasn’t too concerned with it… I was too enraptured with Pollyanna’s wardrobe… such pretty dresses! I wished I had dresses like that.

But then Pollyanna would not shut up about the Glad Game. I didn’t get it. I was much too young and too protected in my life to really know that there were bad things in this world. I knew the bare bones of my story. I had been very, very, very sick as a baby. I almost died. But I didn’t. THIS happened to me instead.

For much of my childhood, I tried to push it away, this thing that had happened to me. I have no memories of it at all. I felt physically and emotionally removed from it, as far as the sun and the moon are from the earth. I must have thought if I ignored it, it would go away.

But it didn’t. I couldn’t escape from myself.

There are stories my parents tell. Funny stories that aren’t really funny, if you think about them too much. Like that time my mom and I were waiting for some lab results in a Seattle’s Children’s Hospital waiting area and a lady in a white lab coat stopped and knelt down to my level. This would have been after chemo and my hair was gone, something I was very sensitive about. I had on a little bonnet and the kind doctor gushed about how adorable I was in it.

Before my mom or the doctor knew what had happened, I had slapped her across the face. BAM!

The doctor was shocked, needless to say. My poor mom tried to explain that I had neuroblastoma and had lost my hair due to treatment, and that it made me irritable. Irritable is actually an understatement for what I was. I was grouchy, exhausted, and not to mention, confused as all get out.

How do you explain to a toddler that she has cancer? Neuroblastoma (side note: my laptop doesn’t even think that is a real word… IF ONLY!!!! It thinks I am trying to spell neurologist, which I know how to spell, thank you very much) is too big a word for a little girl to understand. You can’t explain. You don’t have the words. No one does. The doctors talk to the parents, but not the child. But the parents… yes, I know, the parents have a hard time too. They understand, but they don’t at the same time. It is completely unfathomable to them that their child is being ravaged on the inside by the big C.

Another story: My mom and I think my grandma (or maybe one of my aunts, I don’t know) were in a McDonald’s, and I was sitting on the counter, talking a mile a minute. My mom was getting some pretty strange looks from the other people in the restaurant, and finally somebody walked up to her and said, “Wow. That is some baby you got there!” I was bald from chemo and smaller than most toddlers and so naturally they thought I was younger than I actually was. Surprise! I was not.

Third story: My dad and I had gone to the grocery store. To this day, I still don’t know how my dad managed to carry me and pull my IV pole (which was, unfortunately, my constant companion) and grab groceries at the same time. My tummy was retaining so much fluid that it was sticking out like some sort of premature potbelly. It was huge. In the checkout line, there was this old guy. He was either ahead of us or behind us. I do not know. He saw me and was like, “Whoa,” and tried to poke my belly with his finger. I did not budge nor did my stomach. Awkward moment for the old guy. He must not have seen the IV pole, or if he did, it must not have registered with him.

Before my second surgery – the “look-see” one – I knew what was happening. I started screaming when the nurses tried to pry me from my mom’s arms. And my Gramps, he was there and he saved the day, by taking me and dancing with me all the way to the operating room doors. Then the nurses took me and danced me in there.

I STILL SAY I WAS TRICKED (no matter that I have no memories of this). That picture at the top of this post? Yep. That’s me after my second surgery. Putting on my “happy” face.

And then, the summer before I turned three… Yes, that is when it happened. Ear infections no one knew about until it was too late. The rush to the ER in the middle of the night (or maybe it was during the day… I do have a fiction writer’s imagination), screaming at the top of my lungs that my legs hurt. Over and over. Nothing about my ears, though by this time, I am sure that they were hurting pretty bad by then too. And then… silence. Semi-coma. My parents watching as my body started to change before their very eyes. My right hand curled at the wrist and remained that way (I was right-handed before all of this happened, but now I am a lefty). When my dad was finally able to pick me up, I was as limp as a rag doll.

All this, and my mom was due to give birth to my brother the next month. A newborn and a three-year-old who was like a newborn.

No one would have a Pollyanna attitude about that, would they? And yet. We got through. The doctors had told my parents over and over that whatever I didn’t get back within 6 months I would never get back. But they were wrong. D E A D. W R O N G. They couldn’t have known. They didn’t know me. How determined I was and still am. Yes, I am different. But so what? No two people are exactly the same.

I know I am lucky to be here, when so many others aren’t. I know for a fact there is a heaven. There’s no doubt in my mind – because after all, there’s gotta be more to it than this. More to me. More to you. Here, we hurt so bad, and there is little comfort. But the promise of heaven… that is what I live for. And I know that by telling my story I am helping others. And WHEN (not if… I am optimistic) we find a cure for neuroblastoma and other childhood cancers, it will all be worth it. But nothing, NOTHING will ever make up for the lives that were lost when we were searching. Except maybe heaven itself.

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2 thoughts on “Pollyanna… and then there’s neuroblastoma

  1. Thank you for giving us just a little insight into how you feel about they way was for you. Your feisty nature and determination have helped form you into the lovely adult you are.

    Your compassion and care for other children who are going through this is inspirational.

    Thanks for sharing.

  2. I was at Children’s Hospital the weekend you got really sick. They had an “activity” room for parents and family to throw down mats and sleep for the night. I think your mom stayed in your room with you, but your dad and I put some mats on the ground with the other moms and dads. I was very tired but woke in the middle of the night to see your dad at one of the windows. I watched him move from window to window and realized he was not awake. I knew he slept-walked sometimes (probably due to stress) so I called out his name. Not too loudly— there were other tired people sleeping. He didn’t respond, so I just watched him.
    I wonder what his mind saw out those windows? I think he probably wished he could grab you and your mom and leave somewhere.

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