Awareness

Warning: This blog post is about a social issue in the childhood cancer world, which is unusual for this blog. I don't usually weigh in on this sort of thing, but this one is growing so huge that I wanted to document it for us to look back on, and also to share my thoughts and opinions about it with any of you who are following the news on it.

I know a lot of you come here looking for updates on him - that really is the point of the blog, right? - so I'll give a quick update. He has had 2 days since his last chemo treatment, and yesterday it really wiped him out. He's tired, ornery and woke up at night in pain. Bone pain in his feet. This was a reminder of the last time we went through this type of treatment. I had forgotten, but 2 days after treatment is always the worst day for him. I'm glad there are only 3 more of these days until maintenance! He seems to be feeling better this morning, but is still a little bit grouchy. It'll probably escalate as the day goes on, and he'll need to rest. He'll feel better by the time the next treatment comes along.

Okay. Now I'm stepping on my soap box. If you're here to find out about Matthew, you could totally stop reading here and not miss a thing.

Wow, the childhood cancer community has blown up with media attention lately! It all started with the subject of a bald Barbie. There's a Facebook group that is growing exponentially that has banded together to convince Mattel to make a bald Barbie doll for children suffering from cancer and other illnesses that make you lose your hair - and also to help little girls cope when their mother loses her hair.

It seems like an innocent enough thing, but people have gone insane over it! It is definitely a hot topic, and a lot of my cancer mom friends have avoided weighing in on it at all. Like discussing politics or religion, you will never win.

I can see some of the points from both sides. The Facebook group seems to think this is how we will raise enough money to cure cancer, which is naive to say the least. IF they can convince Mattel to do this, and IF they are willing to donate proceeds, it certainly won't be ALL proceeds. Also, this doll will most likely only be attractive to families going through these events. Meaning it isn't likely to sell millions. Basically, it's not going to help the cancer community as much as these well-meaning individuals think it is.

But, I can't deny that I think a bald Barbie doll would be uplifting for some little girls I know. I could go online right now and find at least 3 pictures of little girls that I know personally who have recently lost their hair, and in these pictures, the girls are bald, and they are holding a Barbie who just got a matching hair cut. Some of the parents think the bald Barbie would only rub salt in the wound of something these girls will want to forget about as soon as they can. I can see that. And I can respect it. But for some of the girls, they're trying to embrace it, and the bald Barbies help them. I can't deny, though, that it's a landmine. I don't know if I'd have the guts to buy a bald Barbie for anyone's kid but my own, and of course, he wouldn't be interested anyway.

Anyway, another major point being made is that the people who oppose it say that it makes them ANGRY that any corporation would profit from the suffering of little girls. It brings out a lot of negative emotions tied to the whole pink phenomenon. Businesses have made so much profit from pink ribbon items made in honor of breast cancer. So much of that money goes into people's pockets, and not towards research. Charities have become greedy, and gone as far as suing one another because the names match too closely.

But, you can't deny that breast cancer has a lot of attention. It is also found a lot earlier now because women are aware of what to look for. The treatment has had a lot of research, resulting in new treatments, better treatments, and ultimately a better cure rate. 99%. That's sort of the Holy Grail of the cancer world.

So, in my mind, the bald Barbie could be the beginning of a little gold ribbon empire. Some of it will be icky, and opportunistic, and I'm not so naive as to think that businesses won't seek a way to profit from it. But even with all of that, I would be thrilled to walk into a Walmart on September (childhood cancer awareness month) 1st to a sea of gold ribbon items donating a portion of proceeds to childhood cancer research. Even if it is pennies on the dollar. It's still pennies that they didn't have for research before.

A lot of parents would rather see the money go straight to the charities that will use it ALL for research. So would I. I just don't think that's realistic in our society. You have to grab people's attention first. Plus, if I'm going to buy the item anyway, why not buy the same item with a gold ribbon, which would prompt the company selling it to make a donation, even if it's a tiny donation?

The way I see it, if I'm going to spend $20 on a Barbie just to turn around and cut off all its hair, I'd rather spend $25 on a Barbie that is already bald, and especially if Mattel will donate $5 or even $2.50 of that money to CureSearch. But if I'm looking for a good cause to spend $20 or $25 on, I would go straight to CureSearch.

When it comes right down to it, I don't think there's any harm in the bald Barbie, and I do think it could do some good. Not TONS of good, but some good. And it will make little girls happy during a very difficult time in their lives. That alone is worth it.

Now. The reason I'm blogging about this is that the bald Barbie "movement" is causing quite a stir in the media. Suddenly, there are news stories all over the place about childhood cancer. It started with the bald Barbie - they interviewed parents about it, asked their opinions, and so on. But it has turned into something more. Something kind of amazing. They are looking at the deeper issues - looking beyond the toy, and looking at the reason people feel there is a need for the toy.

Kids are suffering, and largely being ignored by our society. And the media is starting to pick up on that. No matter where the bald Barbie thing ends up - if Mattel makes it, or if they hold their ground and say no - it has raised awareness. It has made people think. And that is good. Very good.

I've quoted stats about a gazillion times before, so I'll spare you that. Suffice it to say that childhood cancers get next to no research funding, whereas numerous adult cancers get the lion's share. I read something the other day that really hit the nail on the head for me as to WHY that is so bothersome to me.

A little history on what I'm going to quote here: American Cancer Society wrote an article about why the bald Barbie was a bad idea. In it they said childhood cancer is "exceedingly rare." This angered a LOT of people because it trivializes what we're going through, and also because cancer is the number one cause of death by disease in children, so exceedingly rare is a pretty harsh way to describe it. The next day, they removed it from their website, and posted an apology. People Against Childhood Cancer (PAC2) wrote this response to it.

My favorite quote from PAC2's response is this: "America is simply not putting its best foot forward in saving our children from childhood cancers - the leading cause of death by disease for children.

In every other human endeavor our society strives to first protect the young, the innocent, the vulnerable: our children. Yet children battling cancer are virtually ignored."

They go on to tell this story: "In 1852 the British frigate H.M.S. Birkenhead sailed from Ireland with 638 people on board, including 20 women and children. It struck a rock and began to sink. The crew was unable to launch lifeboats to save all passengers and crew. If the entire crew tried to board the few working lifeboats, they would be swamped and all would be lost. Lieutenant-Colonel Seton commanded his crew to stand fast, for should they make for the boats, they would endanger the lives of the women and children. The Birkenhead broke up rapidly. In the tragedy 445 people lost their lives, yet all the women and children survived. The Birkenhead has secured a place in history due to the gallantry of her men, who, in the face of great danger, allowed the women and children to escape in the boats before trying to save themselves. Thus “The Birkenhead Drill” was born: Women and children first! And we know 13,500 moms of children that will be diagnosed with childhood cancer this year that would say to a child: “Take my place”."

I know I would take Matthew's place in a minute. I think it's wonderful that the media is picking up that particular message.

The other thing I saw that was particularly touching to me was a quote from Grey's Anatomy last night. They were preparing to operate on a child with Neuroblastoma, which is a cancer of the nervous system that only affects children. They said, "This is not general surgery on a miniature scale. These are the tiny humans. These are children. They believe in magic. They play pretend. There is fairy dust in their IV bags. They hope, and they cross their fingers, and they make wishes, and that makes them more resilient than adults. They recover faster, survive worse. They believe."

I especially like the first line - "This is not general surgery on a miniature scale."

THAT gets to the heart of something big for me. Every single drug they give Matthew to fight his cancer was made for adults and then scaled down in dosage for children. That's why children suffer so many devastating side effects from their cancer treatment - things like blindness, deafness, stunted growth, neuropathy (a painful death of the nerve endings), etc... - because these drugs were not made with the still developing body of a child in mind. They were made for bodies that are done growing. So, to borrow a line from Grey's Anatomy, and change it a little - This is not cancer treatment on a miniature scale.

These kids need their own drugs. That will never happen without research money. It's been 20 years since a new drug was developed for use in any of the 12 childhood cancers. That's why my passion lies in raising money for research. Someday, I hope that a child who is diagnosed with the same cancer as Matthew can endure less, and I hope to contribute to that. If not me, then who? 3 years and 3 months is too long. I'd like to see that time cut in half. Then eliminated. Then prevented.

I hope the drama over the bald Barbie is the beginning of that dream.