We, the people, do hereby petition for more funds for Childhood Cancer Research

https://wwws.whitehouse.gov/petitions/%21/petition/keep-kids-alive-allocate-more-funds-towards-childhood-cancer-research/8ZnnxNgw#thank-you=p

Copy and paste the above address to your browser and sign!!!!! We need to get 4,855 more signatures by October 26, 2011 to get the Obama Administration to SIT UP AND PAY ATTENTION! There are only 145 signatures so far! Children’s Cancer Research NEEDS to be a priority and NOT an option. Remember the numbers. 46/7. Not as rare as people would like to think!!!!!!!!!!

Tell your family and friends to sign as well. We need to get this in front of President Obama. This is a HUGE step, and it needs to happen ASAP!

Keep the kids alive!

Birthday Surprises

The above image makes me laugh. Mostly it is because it reminds me of my niece (she LOVES surprises and keeps yelling “Surprise!” these days), and also because it’s funny. “Dude, not yet.” I know how that is.

I had a weekend full of surprises, the kind of surprises that remind you that you are loved, the kind that make your heart sing, the kind that creates memories you will cherish in your heart forever.

Friday night, I got a text from Angelica… she’s my brother’s girlfriend and my niece’s mama. She wanted to take me out the next day as part of my birthday present. Anywhere I wanted to do, anything I wanted to do. I texted my sister and asked her if she’ll be home in time to go with us. She said she’ll try.

The next morning my mom wanted me to wear a dress. So I put on this little purple paisley dress with a 3/4 sleeved black button up sweater. It was going to be a hot, sunny day, but I get cold easily so I wanted a sweater. Especially since we would mostly likely be in an air-conditioned restaurant.

At one point when I was getting ready, my mom came in and said Jacqueline was on her way and that she was bringing a surprise. Two seconds later, I had it figured out. Or, at least, I hoped I figured it out. My cousin Kristian goes to CWU too, so it just made sense to me that she would be my surprise.

Yep. She was!

Angelica, Jacqueline, Kristian and I headed out… we went to Applebee’s, Target (Jacqueline let me pick out my birthday present – she made me try on everything), Dutch Bros for coffee (Haha. At this point, I was getting pretty suspicious… they were stalling), and finally to Walmart (I bought dog food for my little ewok).

I think we were going back to the car for the last time when Jac’s phone rang. When she got off she told me that our mom had one of my birthday presents on the kitchen island, and that she had to blindfold me when we went into the house. She also said that they would help me.

Angelica was the one to blindfold me since she was sitting beside me. She used one of my new shirts… Hmmm, what would she have done if I hadn’t gotten clothes at Target? We probably have a blanket or 2 in the car, though I would think they would have been too big to tie around my head, even folded up.

I opted to take off my glasses before she blindfolded me, and she covered my eyes BEFORE Jacqueline turned into the neighborhood. I was thinking, it’s gotta be more than what was in the kitchen that they don’t want me to see.

Yep.

When we were safely inside, I felt Angelica’s fingers at the back of my head. At first, I thought, “What is she doing?” and then it dawned on me… There wasn’t anything on the kitchen counter.

“SURPRISE!!!!!!!!!!!”

The first thing I saw was a bunch of blurry people standing there. And the next thing I knew, my niece had launched herself at me, hugging my knees. I smiled and patted her on the back. I could not see. Finally, someone gave back my glasses, and I put them on. Aunt Liz and Uncle Cary, Aunt Barbie, my cousin Lauren, and Papa were there, as well as both of my brothers. I was happy to see them. There were hugs all around.

More people showed up after I did. Some dear friends. I wasn’t expecting a third surprise, so when my cousin Catherine walked in, my eyes nearly popped out of my head. I was so happy to see her. I was so happy to see EVERYONE. I felt so loved. Still do, for that matter.

A bonfire was started outside in the fire pit when the sun went down. My dad brought the cheesecake out to me, with lit candles (not fair… my parents used numbered candles for my siblings). Everyone sang and Aliza helped me blow them out. Or rather, huff them out. I didn’t really help her, though. I was too busy laughing.

After a while, I got a little cold so I went inside. Presents time! Yes, please! My dad gave me a hard time at first because he brought in a vacuum cleaner they got for Jacqueline. I just gave him a look. I can’t push a vacuum cleaner around. Are you kidding me? Apparently, he was. My real gift was a 32″ HDTV! I got really, really, really, really excited when I saw that. And they also got me a wall mount, so I can have it on the wall and have more space in my bedroom.

Two of my aunts and uncles said they made a donation to the Children’s Neuroblastoma Cancer Foundation in my name. I almost cried with joy when I heard that. Already changing things.

We stayed up really, really, really late that night, watching “Bridesmaids.” I was laughing so hard throughout it that by the end of the movie, I was completely hoarse.

My friend Tammy had sent my birthday package two weeks ago, and kept texting me, “Check to see if it is leaking! Is it smelly? I hope it’s not rotting!” After having the box sit and stare at me a week, I figured it out. Well, I hoped I figured it out. And sure enough….

The next morning, my actual 30th birthday, and around the time I was born (10:45am), I opened Tammy’s box. It was from her roommate, Zeenat, too. It was a Coach purse! I was soooooooo excited! I love it.

My other friend, Val, lives in Phoenix, and I had gotten a box from her too. I pulled out a purple monkey squeaky toy for Buffy, a ziplock baggie full of treats, a book, and a coffee mug.

I have the BEST family and the BEST friends a girl could ask for. Love you guys!!!!!!!!

Being Fearless

I think the image above is right. We can either be fearless or be so consumed with fear that we cease to live the life we want. The latter choice is no way to live at all.

So I am gonna start living fearlessly by making a list of things I need/want to do with my life. It’s checkpoint time. In two days, I will be 30. If I don’t start living now, then when will I?

1. Write. This one is pretty self-explanatory. I want to write. With this comes hopes and dreams and plans to be published. No one out there has my story, exactly. I have a vision of my first novel. It makes me smile. I am still working on the details, ironing out the kinks, but I think it will work. It has to, right?

2. I want to spread childhood cancer awareness through my fiction. Spread hope. Give this monster something to fear. And cancer should be afraid. Very afraid. Nobody puts the children in the corner. They won’t stay there, for one thing. For those of you campaigning for breast cancer awareness in the month of September, shame on you for trying to drown out the voices of those who are trying to stand for the future. In a way, I understand… next month, during Breast Cancer Awareness Month, I won’t stop advocating for the children. They don’t just need us for 30 days of the year. They need us campaigning on their behalf 365 days a year, 24 hours a day, and 7 days a week.

3. When I get published, I want to give a percentage of my royalties to childhood cancer research. This seems right to me. Good motivation. I have been eating, breathing, and sleeping childhood cancer for months now. It is the cause of my insomnia. I woke up to reality. And it’s a cruel, harsh reality that has no business existing. And yet. There it is. It needs to be changed. It needs to be eradicated. If it can’t be eradicated, then it needs to be contained. It needs to be non-life threatening. If cancer has to exist, then it needs to be curable.

That’s it. That is as far as my planning for the future goes. The rest of it, small details and big, is in God’s very capable hands. As is childhood cancer.

Consequences. They’re stupid but necessary.

If I could go back in time and fix something in my life, it would be the very day my ear infections started in July 1984. If I was able to take my knowledge of the future back with me, I would paw at my ears and kick and scream and MAKE somebody, anybody, notice that there was something else wrong with me, something else other than the stupid cancer. If I knew then what I knew now…

But it is no use thinking like this. What is done is done. I know that someday, all this will seem like a dream, like it was somebody else’s life. Just minutes of a harsh reality in the face of heaven. Right now, though, it matters very much.

IF I could go back in time, I’d imagine that there would be consequences. Maybe things would spin out of control in my other life. There has to be a reason this happened. Maybe, in a strange way, I was saved from some horrible fate that would have taken place if this hadn’t happened. God only knows. I trust Him to have a reason for this. I was so lost and confused for the longest time. Angry too. But I’ve let it go. I know that if I was just like everybody else, I wouldn’t be the person I am today. I wouldn’t be as strong. Because there wouldn’t have been any consequences (except scoliosis, for sure. Eff that. Even Sarah Michelle Gellar-Prinze has that, and she was Buffy the Vampire Slayer for years and years. I could have dealt with just scoliosis. As it is, I have to deal with my vulnerability – I prefer that word to “inability” but it still doesn’t sound good. I can’t win.)

At least this way, I get to live. I get to love the people around me. I’m still here for a reason. Maybe helping to find a cure for neuroblastoma and other childhood cancers is part of it. It has to be. I don’t want to be somebody who believes in everything but herself. It sounds funny, but I think that is my problem. I need to believe in my own capabilities in order to break free of my limitations. It’s easier said then done. I am a born procrastinator. I get fired up about something and it lasts for a short while, but only a short while, and I am back to floundering again. Doing nothing of import. Wasting my days away being lazy. Eff laziness!

That cycle needs to stop. I may be a born procrastinator, but I am also a born writer. If I could believe in that even the tiniest bit, there is no telling where I could go in life. Don’t tell me the sky’s the limit when there are footprints on the moon. I am looking at it this way: I won’t get anywhere by procrastinating. But by writing… oh, the places I’ll go!

This Made Me Laugh Out Loud!

So True.

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.

Love Them Right

I am the very last person to give parenting advice, since my chances of becoming a mother are nil. But I can tell you this: Don’t take your healthy children for granted. Cancer is sneaky. It can catch you off guard. If it attacks one of your children, it will catch you off guard. A child can be thrust into the fight of his/her life before you know it.

I read a blog called rockstarronan.com. It is written by a mother who lost her beautiful little boy Ronan to neuroblastoma in May, just three days before his fourth birthday. Her name is Maya Thompson, and thousands of people read her blog every day. It is not hard to see why. Hers is a love story between a mother and child, as heart-wrenching as it is. In each and every word she puts on her blog, you can see that saying is true, the one that goes, “If my love was enough to save you, you would have lived forever.” Ronan was her baby (she also has eight year old twin boys Liam and Quinn), and her heart was shattered when he died. If you go back through the blog, she documents everything. EVERYTHING.

Her grief at losing Ronan is almost tangible on her blog. She writes to Ronan now that he is gone in the physical sense. People come up to her on the street and say they’re thinking of her. I am sure that it must seem to Maya that everyone reads her blog when she’s only writing to Ronan. That’s all right with her because she wants to change things in a big way, and she can’t do that alone. She needs our help.

Maya is up for an award… go to babble.com and look for “100 Moms Who Are Changing The World” contest. She is in the charity category. Please vote for her. If she wins, she says she will give the award money ($5,000) to another family in her area (Phoenix, AZ) who was just stricken with neuroblastoma. Two year old Nate Dinoffria was diagnosed in July. Nate’s mom, Beth, blogs too. Supernatedinoffria.blogspot.com

I am digressing from my topic a little here, so here we go…

Maya has mentioned time and time again how often we take things for granted, like our health and the health of our children. We lead busy lives, and often don’t treasure the small stuff. I know that if I was able to have children, I would treasure everything, and I do mean everything (like I do with my niece). Each smile, each hug, each kiss, each peal of laughter, and yes, even each temper tantrum. I wish we could bottle our memories. If we could, then diseases like Alzheimer’s couldn’t touch us, wouldn’t exist (but that is another post for another day).

Today’s message is simple: if you have children, love them right. Because tomorrow is not promised to anyone.

Goodness. I don’t know how she sings this song without breaking down.

46/7

46 children are diagnosed with cancer each and every day. 7 children die of cancer each and every day. This world loses 49 children a week. By the time September ends, 210 children will be dead because of this monster. It is childhood cancer awareness month. What can you do?

I think we need to start talking about this, passing the statistics and other information on by word of mouth. I am not going to shut up about this. It’s too important for me to let go. Sooner or later, the right ears will hear this and want to know more, and then the revolution can begin for real.

So talk about it at the dinner table, on the phone with friends, on facebook, anywhere you think you will be heard. Because we MUST be heard. Children can’t fight cancer alone. They need our help!