It’s “Benefit for the Amazing Ben Day”

WHAT AN AMAZING DAY! My dear friend, Angela, sent me an email back when we found out that Ben relapsed in July. She asked “Can we hold a benefit for your family at the Outback on September 27? Just say yes or no. You don’t have to be there if you can’t make it.” I replied that they could do that and went back to the grueling world of having a child with cancer.

I wouldn’t say that I forgot about it. I knew that she had recruited a few people – namely Ms. Nancy (Mad’s former preschool teacher) – to help organize the event. But I just had no idea what all they were up to. I did know that they wanted to sell 200 tickets for a luncheon with proceeds going to us for Ben’s treatment. Wow. 200 tickets. I thought that was a lot.

Fast forward to today. Ben was feeling good so we were able to attend the event. When we arrived there were fire trucks out front waiting to take Ben and Madeline for a ride. I went inside the restaurant while Dad was on the truck with the kids and was completely overwhelmed. There was a bake sale. There was a silent auction loaded with donations. There were hundreds of people. Many of these people I had never even met. I was amazed by the outpouring of love and support. Stunned.

Ben’s pediatrician came! Madeline’s Kindergarten teacher, preschool teachers and former preschool director were there! Ben’s home/hospital teacher came as well as many of his school buddies. Families who have children at Canyon Creek and didn’t even know our family personally attended. So many people! Michael, the owner of the Outback, said that they served 295 plates today, which is about 100 more than he usually does for a benefit. Wow. And then there were people who bought tickets who weren’t able to come – they just wanted to donate. The outpouring of love and support was simply amazing.

Ben’s favorite guest was his girlfriend, Skyler. They still have big plans to marry someday. ๐Ÿ™‚

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At the silent auction four people bid on four buddy passes for us to use when we need to fly to New York. Meg, the director of Madeline’s preschool, brought a jar of change that the preschool kids had been contributing to over the past few weeks. It was a gigantic jar that weighed 17 lbs, 4 oz.! We’ve yet to count what’s in there. Ben is very excited to count it all!

We are amazed, overwhelmed, and humbled. What an incredible outpouring of support. Thank you, everyone. Thank you Angela and Nancy for all your incredible work. Thank you Michael for hosting the event and continuing your amazing kindness to our family. Thank you friends and supporters for all you’ve so generously given.Thank you, thank you, thank you. I am so completely overwhelmed that I had to come home after the event and take a five-hour nap. Now I’m gonna be up all night ๐Ÿ™‚

Click on the link below to look at more pictures from the event.

I’ll be sure to update when we have the grand total!

http://photos.benbrewer.org/index.php?album=outback-benefit-sept-2009

More later ๐Ÿ™‚

It’s Cherries Jubilee Day

I really don’t have a lot to say about Cherries Jubilee. I don’t believe I’ve ever had what some consider to be a tasty treat, but then again, I’m not really big on dessert.

I’ve been wracking my exhausted brain trying to come up with something to write about regarding this topic. The only thing that comes to mind is floating in a gigantic swimming pool filled with cherries. The raft I’m on is blue. I’m lying on my back with my hands folded behind my head, eyes closed, and drifting in my sea of cherries. No waves or ripples, just smooth sailing.

I guess this is not an original thought. After all, there is a popular saying that “Life is a bowl of cherries”. This is usually followed by another statement cautioning one to avoid the “pits” in their cherry-filled life. I can’t even come up with something adequate to say that would reflect how riddled with pits this life has been. I’m so tired.

But, in my pool of cherries, there’s not a single pit to be found. I’m relaxed. Floating. Absolutely no worries.

And I’m pretty sure I have a tan. Clearly, this is a grand fantasy.

More later.

It’s “Checkers Day” AKA: “Dogs in Politics Day”

Checkers Day isn’t as simple as it might sound. I was thinking this was an actual celebration of the GAME, you know,ร‚ย  more along the lines of “would you like to be the red or the black circles?”. But it’s not. Checkers Day revolves around Richard M. Nixon’s dog, Checkers, and a speech he gave that (so I’ve heard) probably saved his career (prior to Watergate, of course). Read on.

Origin of Checkers Day:

In 1952, Richard M. Nixon was a candidate for Vice-President of the United States, running with Dwight D. Eisenhower. ร‚ย Media speculation centered around an $18,000 campaign contribution, and speculation that Nixon may have used some for his personal use. ร‚ย In a brilliant political maneuver, Nixon took his case to the American people.

On September 23, 1952, Richard Nixon gave a speech that directly addressed and explained the issue. He assured the public that he did not use any of the funds for personal use. Towards the end of the speech, he stated that his daughters had received a dog, which they named “Checkers”, as a gift. He said they would keep the dog.

This speech quickly became known as the “Checkers” speech, and went on to be one of the better speeches in American political history.

So there you have it. Whoopedeedoo.

I like the idea of celebrating the board game instead although I’m not very good at that particular game. I’ve always wanted to master chess as well but if I can’t excel at checkers why do I think I would be able to handle something as complex as chess? I hear it’s, like, super tough. Cribbage was a good game, but I haven’t played cribbage since the “Great Blizzard of ’78”. Thinking about cribbage now always reminds me about the countless hours without power, huddled up with sleeping bags around the fireplace in our family room, and being so hungry that I was considering eating my little step-brother. Oh, okay, so we weren’t without power for THAT long, but I probably did fantasize about sticking little Matthew out in the frozen Ohio wasteland. I mean, c’mon. I was nine and he was seven. What do you expect? And we were STUCK INSIDE with nothing to do! I do remember, however, wondering what would happen if I passed a roll of toilet paper over the flame of the candle I was using to guide my way through the darkness. I found out. And haven’t been comfortable around fire ever since.

I buy board games but we rarely play them. For Ben, if it’s not Mario Brothers or Legos, well, just forget it. He’s all about the electronics. AND he makes fun of me because I like the “old school games” like Pac Man, Tetris, Dig Dug, Space Invaders, Frogger, Donkey Kong… you get the picture. He says “Mom, that’s so 8-bit”. I don’t get it.

He actually looked at my driver’s license photo recently and said “You look 8-bit”. I’m guessing it refers to some sort of pixellation. Or being shiny. Why is that? With all of today’s technology, wouldn’t you think the DMV could get some better camera equipment? I mean, it’s not as fuzzy as, say, Sam’s Club or Costco, but it’s still pretty distorted. I don’t know anyone who feels particularly good about their driver’s license photo. And we usually lie about our true weight and hair color so the whole driver’s license experience is certainly not a lesson in cultivating a positive self-image. Plus, the employees are bitter. I’m sure if we could read their minds, we’d appreciate why they’re bitter. They spend their days looking at people and thinking “ain’t no WAY you weight 115” and “yeah, right, you’re a natural blond – your roots are saying something else though” and externally saying “No, we DON’T have a mirror” while internally thinking “nothing you can do to make this picture more attractive anyway”. Oh, okay, they’re probably not THAT surly. But I think I would be if I worked there.

Maybe working the counter of the DMV should have been Nixon’s punishment for all the lies he spun over the course of his political career. He’d have to spend day after day saying, “Why, of course, you’re a natural blonde, Mrs. Smith! And you can’t seriously believe that you weight as much as 120, now! You just HAVE to weigh much less than that! Are you sure you want to donate your organs? They look so good on you.” And then as he leads Mrs. Smith over to the camera for her photo shoot he assures her that she’s never looked lovelier. Then he proceeds to smile his toothy grin at her as he snaps the shutter, ensuring a picture checkered with pixellation.

Happy Checkers Day. More later. ๐Ÿ™‚

Elephant Appreciation Day

Today we must take time to appreciate our elephants. For me, I don’t have to go to the local zoo, I can “appreciate” the elephant that’s standing right in the middle of my room – house, really.

You might be thinking you know what our elephant is named. You’re saying “Oooh! Oooh! I know this one! It’s called CANCER.” Well, that animal is certainly around, invading our living space and our son’s body, but it’s not the animal I’m referring to. The elephant that has parked his gargantuan butt in the middle of my house is called “DEATH”.

You might not be able to see this elephant when you come into my house, but you probably think about him. He makes his presence known. You look at my son’s bald head and know that his hair is not a fashion statement. My son has cancer. Aaaargh! I got so used to saying “My son is a cancer survivor” and now I have to revert back to that ridiculous statement. Again. Wasn’t once enough? Didn’t we feed that elephant enough the first time it invaded our house and threatened to take my son? It had to come back for more? Seriously?

I’m afraid that this elephant won’t be satisfied until it takes a life this time. That’s why I’ve named him “DEATH”. And he stinks. He’s here for my son. He’s here in MY house and he’s after my child. And there’s nothing I can do about it.

Really, I’m not being dramatic. I’m not being negative. I am being realistic. Honestly, I hate being realistic and certainly prefer to be silly or humorous or goofy or anything but facing the facts. I’ve gotten pretty darn good at taking the ridiculous trials of my life and turning them into something that can make others laugh. But this elephant is sitting on my chest and forcing me to think about him. I can’t breathe.

Ben’s prognosis is poor. It was the same for the following kiddos: Eden. Sophia. Allie. Nick. Stevie. Christi. Tyler. Jake. Alex. Alex B. Kathryn. Ian. Jackson. Sandra. Kyra. These are all kids that I’ve known – or know their families. All of these kids have died from childhood cancer. Most of these kids relapsed with neuroblastoma, just like Ben. And these are just the names off the top of my head. There are so many more. And I’m so scared that Ben is going to be one of them.

Please understand that I haven’t lost hope. I certainly hope my son survives. I hope he gets to grow up. I hope he has a family some day. I hope he dies peacefully in his sleep when he’s in his 90’s after living a life full of love and adventure. But Eden’s family had hope, too. And Sophia. And Allie. Nick. Stevie. Christi. Tyler. Jake. Alex. Alex B. Kathryn. Ian. Jackson. Sandra. Kyra. All their families had HOPE. And the elephant sat right on top of that hope and took these precious children. I hate this elephant.

I’m trying to keep up. I’m doing my best. But the poop this elephant leaves laying around my house is tremendous. It infiltrates everything. And just when I get one part cleaned up he makes a mess somewhere else. Damn elephant.

So, today, I’m going to try to appreciate that elephant. I’m going to be a good hostess and feed him only what I’ve prepared for him. He gets no more than that today. And I’ll kindly ask him to go outside to poop and to be a good house guest and leave when it’s time for the kids to go to bed. Today, and today only, I will try to appreciate him. He cannot take away the fact that my son is having a good day. He might rejoice when he hears Ben cry out in pain during the middle of the night, but I can guarantee that I’ll be riding his butt about leaving my son alone. Even on the day I am supposed to be appreciating him.

But really, he’s taken enough. I just can’t let him take any more. I’m going to keep fighting him despite the large, stinky poo-bombs he’s leaving all over our lives.

Man, this entry is a bummer. I guess I could have written about the GOP instead.

More later. ๐Ÿ™‚

International Peace Day, World Gratitude Day, and Miniature Golf Day

Wow. I am so not qualified to speak on either International Peace nor World Gratitude Day. It’d be nice to have world peace AND have everyone be grateful for it, but I don’t believe we’ll ever see that in our lifetime. Besides, what would we complain about then? And I just can’t imagine the people of Denver allowing a peaceful merge of lanes amongst their fellow vehicular neighbors let alone having the rest of the world get along. Not even for one single, solitary day.

So let’s talk about miniature golf instead. After all, I am a professional putt-putter. Really. I’m not joking. Oh, okay. I am. But there’s a story behind it. I know you’re dying to hear it. ๐Ÿ™‚

Once upon a time, in a land far, far away, I was a beautiful princess living in an amazing castle… oh wait. Wrong story. Okay. Starting over. Once upon a time, I was a fair maiden living in a land of glistening powdery snow, high upon a mountaintop in an apartment with five other people. There were boys as far as the eye could see. Some good-looking. Some well-educated. Some, well, some were complete losers. Actually, many of them were. See, I was living in a place called “Summit County”, a mystical land that some only dream of visiting – let alone actually live there – and I was one of the fortunate ones.

This play land of outdoor recreation did hold about 10 boys to every one female, which could be quite appealing to those in possession of XX chromosomes. Let me warn you ladies – before you start packing to move out west and find the man of your dreams – there is also a well-known phrase about the boys of Summit County: “The odds are good, but the goods are odd”. Oh, it’s not a joke.

(I have to interrupt here with the following: Miguel, Bryan, Brian D, Anson… I love you guys. But seeing how I never dated any of you – wait, did I? No, I didn’t. I just wanted to make my devotion to you clear…)

I dated a few of these boys with less-than-satisfactory results. Oh, they were never mean to me, but it got tiring lending them $5, or giving him (and five of his buddies) a ride to the mountain with all of their ski gear in my Ford Escort. After about a year or so of dealing with deadbeats, I lowered my standards and declared “The next boy I date will have his very own car. That’s all I want. I want my next date to pick ME up for a change. If they happen to pay for dinner, I will consider marrying them.”

And that’s what happened. The next boy who asked me out not only had his own vehicle, but his own apartment (unheard of!), a decent (and consistent!) job, extremely good-looking, polite (he opened the car door for me!), and didn’t do drugs. He was the holy grail of Summit County. All the girls (all 15 of us) were sweet on him but he chose me. He picked me up in his car, took me out to dinner that HE PAID FOR, then ASKED if he could kiss me goodnight.

I married him.

It sounds like a happily ever after, but it wasn’t. I’m quite convinced that he married me just to get back at his family and have a disguise for his alternative lifestyle. He was from a very “fancy” family; well-off, politically connected, upstanding members of the community, all that jazz. They were simply fabulous. In one of my earlier meetings with them, they actually asked if my family had ever owned slaves. They were against it, you see, and just needed to know. I told them that while my family does have roots deep in the Southern territories that I was not aware if “my people” ever owned slaves. I’m thinking we were more along the lines of plain ol’ commoners and didn’t have the resources to care for any extra staff.

There are many stories I could tell you about what jerks these people were, but my personal favorites always revolve around explaining myself.ร‚ย  For instance, when introducing me to people, say, at a cocktail party loaded with the elite, they would encourage me to NOT tell others what I did for a living (I was a bank teller) or talk of my family background (I’m a hillbilly).

It was inevitable that I would be asked through clenched teeth and botoxed eyes what I did with myself when I wasn’t attending fabulous parties. So, I made stuff up. Once, I mentioned that I was a professional cheerleader. This caught the attention of what had to be a severely dirty old man. He said he loved professional sports and since he had access to every major stadium in the free world, he must have seen me cheer once or twice. He stared with his lecherous eyes, giving my body extra attention, perhaps even a bit of drool escaping his lips. When he asked which team I cheered for that’s when I explained that my high school – just a little ol’ place in central Ohio – lets me come back whenever I want. Since I’m no longer a student there, they’ve upgraded my status to “professional” so I’m not stepping on any students toes. Needless to say, I left him speechless.

And a new hobby was born. To date, I’ve been a jockey, a snake milker, Barbie dress designer, and, of course, a professional on the Putt-Putt golf circuit.

Fortunately, me and Mr. Fancy-Pants divorced after two years of marriage. He evaporated into the land of fabulous-ness and I was left with my made-up professions. I reflect back on them from time to time and let myself have a good chuckle.

I should have waited for the SECOND guy with a car.

More later ๐Ÿ™‚

“Make a Hat” Day

“I can make a hat, or a brooch, or a pterodactyl.” – Johnny (from Airplane, one of my very favoritest movies ever!)

So. I have absolutely no plans to make an actual hat today. I gotta go to the bank, get some groceries, pick up the van from the shop, get ready for tomorrow’s surgery, and MAYBE go to the gym. I haven’t decided yet if a workout makes the list but I can pretty much guarantee that making a hat will not be a part of my day.

At Columbus Children’s Hospital (now known as Nationwide Chiildren’s) it was customary for children receiving services from the surgery department to get a felt hat as part of the check-in process. “Hey, we’re going to be slicing into your stomach and removing a tumor the size of Texas. There will be blood, and guts, and stitches. But you’ll be knocked out so you won’t feel a thing. And we’d like to give you this felt hat. See? Doesn’t that make it all better?” Ben received more than one hat during his tenure at Columbus/Nationwide Children’s. And he did love it. It kinda did make it all better for him. Then again, he was three.

IMG_0083_2Here he is… age three… holding a plastic sword and wearing his felt “surgery” hat. Slaying the beast. We still have at least two of these hats in our possession. See? It’s all better.

That’s actually the tag line for The Denver Children’s Hospital… “It’s all better”. I wonder who came up with that? And were they thinking about heart patients and transplant recipients and oncology kids? Or just kids with broken bones and tonsillectomies? Sometimes it doesn’t get “all better”. Or maybe they’re just referring to the new and improved facility? It is a multi-million dollar extravaganza of children’s art work and state of the art equipment. So, I guess a potential lawsuit over this tag line could be deflected by stating that “it’s all better” just means that the hospital is fancier than it used to be, not that we’ll make your kid “all better”.

So. Ben has surgery tomorrow in hopes that they’ll get the rest of that stinky tumor. It’s currently hanging out behind his heart, clinging to the pleura (the lining of the lung) and invading one of his ribs (Man! I wish I woulda paid more attention in biology!). From what I understand, partial removal of the rib will be necessary just to ensure that they get all of the affected area. I’m trying not to panic.

The receptionist at the surgical center is a ding-dong. First of all, she asked if we received the packet containing surgery info. I said no. She said she’d overnight it to me (this was last week) but I still haven’t received it. She then asked me if Ben had been to the hospital before. If he hadn’t and was scared about coming in he could attend a surgery tour. I explained that it wouldn’t be necessary because, according to the bills we’ve been receiving and trying to pay, I’m sure we’ve funded at least part of her reception area. Or at least the little rubber wrist guard at her computer, which fights off the evil carpal tunnel. I mean, really. I know she must talk to lots of people every day, but Ben is AN ONCOLOGY PATIENT. That must clue her in that he’s been to the hospital at least a couple of times.

I just got off the phone with our ding-dong “scheduler”. I hate calling the hospital because they have the WORST hold music. It’s not muzak. It’s not anything recognizable. It’s just this horrible noise. Finally, after about five minutes of listening to the “loop” I was connected with the main receptionist. I said, politely, “Surgical Center please.” Manners were not her forte, so she briskly stated “Hold” and shoved me back to the land of hideous noise. Then the next thing I heard was “Dental Department”. Seriously? The DENTAL DEPARTMENT??? That doesn’t even sound remotely like “Surgical Center”. The nice man in the Dental Department told me that they couldn’t help me but I begged them to PLEASE put me in touch with the correct person instead of transferring me back to the main receptionist. Clearly, she wasn’t interested in helping me since she was the very person who had just transferred me to the DENTAL DEPARTMENT. So, after listening to the hideous noise for a bit longer, the nice man did the job that wasn’t his and got me in touch with our ding-dong scheduler.

She acted truly surprised that I hadn’t received her overnight package that she forgot to send to me last week. So, with my monotone voice, I said, “please just verbally give me the information.” When I speak with this tone I’m just one step away from shooting-spree. Just so you know.ร‚ย She then informed me that this will be an outpatient procedure. We check in at 12:45. Surgery is scheduled for 2:45. It will take about three hours to resect the tumor. That puts us at 5:45. I would anticipate at least an hour in PACU (post anesthetic care unit). And then we’ll move to a step-down room for monitoring until they deem him ready to leave. And then they’ll kick us out. Just in time for bed! It would be nice to have something a little more concrete though, since I do have a second child to care for. Oh well. When I asked our nurse practitioner last week if this would truly be an outpatient procedure she told us to just plan to stay overnight.

At least we’ll get to watch cable.

So pray for our little Ben tomorrow. And pray that mom doesn’t have anymore incidents that push her closer to the edge of embarking on a shooting spree (it’s always bad when I start talking about myself in the third person).

Hopefully, they’ll give Ben a new hat. That would truly make it “all better”.

More tomorrow. ๐Ÿ™‚ Or not.

It’s “Teddy Bear” Day

Today’s Teddy Bear Day is not a Nationally recognized holiday but one completely worthy of celebrating.

I love my teddy bear. His name is Roger. I got him as a birthday present from a school friend (Kristie Kohn) and named him after my first major crush (Holly Crawford’s dad). Whew. That Roger Crawford was a good-lookin’ man. I must end this fantasy train of thought immediately or I will never talk about Roger the Bear. Roger Crawford, however, is completely worthy of his own holiday. Maybe next time there’s nothing on the holiday schedule I’ll talk about him. ๐Ÿ™‚

Roger (the bear) and I formed an immediate bond. I took him everywhere. Not only was he a constant companion throughout my primary school years, he also traveled with me to Ohio University. I’m sure he saw more than he wanted to throughout my five years of college, but if it bothered him, he wasn’t sayin’.

When I completed my degree I moved back to the Central Ohio area. My sister had an apartment in Grove City so I moved in with her. It was a strange transition time. I was looking for a job, dating a boy in Cincinnati who I traveled to visit every weekend, and doing a whole lot of cross-stitching. Roger was always somewhere close by.

My sister wasn’t a fan of Roger the Bear. She thought that a 23-year-old woman had some severe mental issues if she was spending so much time with an inanimate object. I was offended. Roger was real to me. After all, I always cried when I stuck him in the washing machine thinking he was going to get sick from all the spinning around, and if I ever had to put him in a plastic bag I always made a couple of holes for him to breathe through.

Okay, maybe I had a slightly unhealthy relationship with my stuffed animal. It was, however, never an inappropriate relationship even if there were some questionable boundary issues.

Anyway, one particular evening, my sister came home from work to find me snuggled up on the couch with Roger. I was cross-stitching a gigantic project for my mom and had stuff strewn all over the place. I think her anal retentiveness radar started screaming (she is a major neat-freak, I am not) and since she didn’t want to complain solely about the mess I had made, she started fussing about Roger. She said something revolving around the phrase “I can’t believe that you still have that stupid stuffed animal.” I picked up Roger and said something to the effect of “Did you hear that, Roger? Cassi thinks you’re stupid.” This really set her off. She then started picking on me for talking to a stuffed bear. That’s when I cupped my hand around Roger’s little teddy bear ear, looked directly at my sister, and started whispering to him. My sister’s eyes grew wide with the thought that I was sharing secrets with my bear about her. I think if she would have had access to a firearm, she would have shot me. She stalked out of the room and didn’t talk to me for hours. I almost shouted out to her “See! You think he’s real, too, or that wouldn’t have upset you!” I didn’t though. And I’m still alive today!

I’m 41 now and I still have my Roger. I don’t sleep with or snuggle up on the couch with him anymore. He hangs out in my closet. He has a prime spot on the top shelf where I can see him everyday. His current job is to guard the box that contains the cremains of my cat, Bob.

Oh, my Bob Cat. His is a story for another time. I had a similar attachment to Bob as I did with Roger. But at least with Bob I chose an actual living and breathing thing to obsess about.

If you still have your stuffed animal from your childhood, go find him/her and give it a big old hug. If not, then go buy a teddy bear and donate it to your local Children’s Hospital. There are lots of sick kids out there who need a friend like my Roger. He brings such joy to my life.

More tomorrow. ๐Ÿ™‚

Pardon Day

I’m sorry I haven’t been consistent lately. My plan was to write every day this month about Childhood Cancer: the families we met, the little friends we lost, the experiences we had – but it was just too difficult. I started writing about our dear friend, Eden. She passed away last December from Neuroblastoma at the tender age of eight. I broke down while writing about her. I just couldn’t continue. Had we not recently received the news that Ben had relapsed, I might have been able to continue along that thread but I just couldn’t. So, I’m going to revert back to focusing on obscure holidays. And today is Pardon Day. So let’s get on with it.

Pardon Day came about on September 8, 1974, when President Gerald R. Ford pardoned former President Richard M. Nixon of any wrongdoing regarding the Watergate Scandal. Just a couple of hours ago, I heard Ben saying “I am not a crook.” I have no idea where he would have picked up this phrase or why he would make such a statement, but it was pretty funny. And timely. He played into my blogging beautifully.

Forgiveness is a difficult thing – to ask for or to do. I’d rather eat dirt than experience any conflict, so I tend to run away from anyone that I’ve done any serious damage to. I know, not nice. I eventually ask for forgiveness but prefer to wait for many years to bring it up. On the flip side, I do keep a “personal book of harms”. Yes, just like Dustin Hoffman in “Rainman”. All the hurts I’ve experienced are written in volume upon volume of diaries and journals. Some people have an entire book dedicated to the atrocities I believe they’ve committed against me. I am sincerely trying to forgive and forget what others have “done” to me. And I am diligently trying to learn how to forgive myself.

Being sorry seems to be a chronic state for me. I’m sorry for things I didn’t do. I’m sorry if someone is having a bad time at a party. I’m sorry if someone has a coupon for an item at the grocery store that is out of stock. Imagine my level of sorry when one of my friends loses their job. Or their home. Or their child. I have such inner turmoil for others.

And then I do the ridiculous, like blame myself for things that are most likely not my fault. For instance, my son, Ben, has cancer. I, myself, am a cancer survivor. I had surgery and radiation therapy in 1993. I was told that children would probably not be a possibility seeing how I’d have to be radioactive every six months for follow-up purposes. All of that ended in 1998 when I was declared to be “all clear”. My relationship with my first husband spanned from 1995-2000. We produced no children, so I figured I was barren. And I was fine with that. So BIG surprise when I found out that I was pregnant with Ben. Giving birth to a beautiful, healthy son was a life-changing event for me.ร‚ย  And then when he was diagnosed with neuroblastoma at 2 1/2, of course I fell apart for the obvious reasons, but I also blamed myself. It was because I had gone through treatment. Thanks to the radiation therapy I had “fried eggs”. Despite doctors telling me that there was no way to link the two diseases I was convinced that it was my fault. On top of everything else I was going through I added one more layer of unnecessary guilt to my onion of a life.

This past weekend I was fortunate enough to spend some time up in the mountains while Matt stayed at home with the kids. I’m not completely selfish but I do so much better when I can sort through things without the normal distractions of everyday life… and it was quite cathartic. Taking in the beauty of the surrounding mountains was comforting. The sensation of love was overflowing. I know there’s so much I need to just let go of. Forgive. Forget. Quit feeling guilty about all the things I can’t control. Yes, my son has cancer. And while I can logically understand that it’s not MY fault, emotionally I have such a hard time accepting this simple fact.

If I could just get a Presidential Pardon, I’d be all set.

More tomorrow ๐Ÿ™‚

The First

We had never heard of neuroblastoma when Ben was first diagnosed in 2004. Of course we’d heard of kids gettingร‚ย  leukemia, which is horrifying enough, but children getting any other sort of cancer was a ridiculous concept to us.

The first opportunity I had to go home after Ben’s initial diagnosis I ran straight to the computer. I started researching. And what I found was horrifying. Neuroblastoma was rare. Neuroblastoma had a very low survival rate. Most children do not survive a stage 4 diagnosis, which is what our Ben had.

I had to meet a survivor. I had to meet someone who had beaten the disease. In my search to find someone, I had to start with who was currently in the hospital. There was one little girl who had relapsed and was back in treatment, and two little girls who were about a month ahead of Ben in their treatment protocol.

During my nights of wandering the halls I met up with Michelle. She looked very familiar to me but I just couldn’t place her. Through our chats I learned that she was approximately the same age as me and that her daughter, Sophia, had been in treatment for neuroblastoma for just a couple of months. Sophia was just a year old.

We were outpatient after a round of chemo when we ran into Michelle and Sophia at the clinic. Ben was probably getting a blood transfusion. Sophia was sitting in her stroller. One leg was hanging over the side and she was bouncing it up and down. A smile spread from one side of her face to the other as she looked at me. I could see her little tubies peeking out from under her shirt. She was so tiny. And this horrible beast had its hooks in her.

I watched her beautiful eyes as her mother described what was next in Sophia’s treatment plan. She was to have surgery in just a few days. We were due to come in the following week for Ben’s next round of chemo. I told Michelle that I would look them up when we were inpatient. We exchanged well-wishes and said our goodbyes.

We went inpatient on a Monday. It would take us about an hour to get settled each time we “checked in” to Children’s. As soon as we were settled a nurse came in to hook Ben up to his chemo. I asked his nurse if Sophia had made it on to the floor yet, since I knew she’d had surgery a few days before and was probably still under her surgeon’s care. The nurse looked me right in the eyes and I knew. I knew what she was going to say before she said it. And as the words came out of her mouth my ears tried to shut them out. No. No. No.

Sophia was gone. The beautiful little baby that had bounced her leg over the edge of her stroller had died.

I woke up to rain the day of Sophia’s funeral. Ben was still inpatient. My mom came to sit with him and Madeline (who was just a couple of months old) as I went to the funeral. When I walked into the service I recognized several people and realized that Michelle and I were related in a crazy, roundabout way. My father’s wife was previously married to a man who was Michelle’s uncle (trying to follow my family tree is a hopeless endeavor, I imagine that I will have my own documentary on the History Channel some day). Michelle and I finally made the connection at the same time – I was the scrawny freckle-faced girl she knew so many years ago. It might have been a fun discovery if it wasn’t under such horrific circumstances.

It was a Catholic service. I listened as the Father said things like “I’m not here to tell you why children suffer and die”, I very nearly raised my hand right in the middle of the service because I wanted to know the answer. I was not satisfied with statements like “there’s evil in the world and that’s why children die”. To me, that’s not an answer. That’s baloney.

At the end of the service they wheeled out Sophia’s tiny casket. Michelle walked behind it. Right as they were leaving the sanctuary, Michelle reached out and rubbed the top of the casket – right where Sophia’s head would have been. I don’t know if anyone else caught that since we were all getting up to follow behind. I guess I saw that last gesture as something a mother would do. A sign of affection.ร‚ย  A tousle of her child’s head.ร‚ย  A child that should be by her mother’s side instead of lying in a casket.

I traveled back to the hospital. Rain pelted my windshield. Thoughts of my son fighting for his life suddenly marred by the harsh reality that this disease has no problem whatsoever in taking his life. And there was not a damn thing I could do about that. Just sit by and watch it happen. Try to soothe whenever I could but ultimately knowing that I had absolutely no control.

Michelle called me later that week and told me what had happened. Sophia died right after surgery. She developed pancreatitis after a successful surgery and died in her mother’s arms. Michelle watched as the life left her baby and her little body grew cold. Michelle said it happened so quickly.

This event shattered my heart. Sophia’s death shook me to the core. And each little friend that we lost along the way over the next few years just hammered it home that cancer doesn’t care. It just doesn’t. It exists solely to rip us apart. To destroy us. And even though we kicked it out once, its back. And it just doesn’t care that I had plans for my son. For him to grow up. Grow old, even. Be healthy. Happy. A good big brother. A wonderful son.

Damn cancer.

It’s National Childhood Cancer Awareness month. Wear a Gold Ribbon to support Ben. And Sophia. And all the other little kiddos who have fought for their lives.