Not this time….

So, this is another one of those bad reports. I got to Dana Farber today. It was all kind of touch and go because as I said, I didnt know til about 10 or 11 if I was on or off.  My caseworker Stacey greeted me. I was all excited. She was not. In the very short time between when she and I got the go ahead til right then, other tests had come back for Superman, and they were not good. As we were speaking, he was waiting on bone marrow biospy results which basically shows if he relapses back into the leukemia or not.  I guess it was a judgement call on someone’s part to give us the thumbs up too early. Stacey had tried to get ahold of me before I got in.  But there I was waiting– not after my shot to see if I had side effects, but to see if I would even get the shot at all.

It turns out, I wouldn’t. The Guy has relapsed. And now, well, I don’t know. I have to wait and hear what happens next. I’m not a doctor. I can’t predict what his chances are of staging another comeback. I don’t know. I feel very sad for his family. This has been a horrible roller coaster and an unrelenting one.  I didnt even know if it was going to go through this morning, so I dont think I feel as upset as I otherwise might have. I think I was beginning to get happy about it, but it’s been such a twisting thing.

I just really bad for him and his family.

There isn’t a lot of rhyme or reason to a lot of what happens, like this guy getting so close to the thing he really needed and then this happens.  I mean, he was five days away this time. ..I don’t know. It’s not in my hands. We all just have to try to do the best we can when we can. 

I know this is sort of coming across like, all considered, a negative thing to be involved in - but it isn’t.   I really, really urge people to visit BeTheMatch.org and get on the registry. You could save a life. That’s a pretty cool thing to do.

Thanks to everyone who’s been following this story.   I’ll keep you posted.

-Beth

PBSC Donation: “It’s a go.”

I got that message from donor coordinator Stacey my caseworker at about 10am.  “It’s a go.”  So I’m off in about 30 minutes to Boston for my first of four shots. This is actually going to happen, people.

Superman Obi Wan Muhammed Ali Houdini 2012, we are approaching the launch pad….

A New Standard And An End To Shrugging

So 2012. As those of you following along at home may recall, my goal this year is to make each new monthly topic somehow relate to the welfare of kids. I know in January I’ve been mainly recapping the ongoing pbsc transplant thing, but I want to get in a few kid entries if I can.  So let’s call January the month where I map out some ideas for the rest of the year….

For some reason, I’ve read a few articles this week about child labor and sweatshop labor in China (Foxconn, look into it…) and in the African chocolate industry. I’ve read about this stuff and even blogged about it before. You know about it, too, perhaps.

I got discouraged by the comments after the articles. A lot  “They need to feed their families. And it’s better than sex slavery.”  And “ I worked when I was a kid.”  And “ The company has to make the best profit and Americans want cheap goods.” And ” It’s just the way of the world. What am I supposed to do – NOT buy this or that? C’mon.”

Here are a few points that occured to me upon reflection:

I agree. Any job is better than being a sex worker, particularly if you’re a kid. 

I agree. Child labor is a complicated situation because a lot of families do need their kids to work in order for the family to subsist and going in and ripping kids out of jobs could have a very serious impact on families.

But:  It’s absurd to insist  it’s either sweatshop and/or borderline field slavery or prostitution.  People who own manufacturing companies and farms and mines, and the people who buy their raw materials or use their labor to make goods – have a choice about the conditions and the pay they offer and  what they consume. And they are choosing to go in the worst direction to make their own lives better at someone else’s expense - - because desperate people will do anything.

And: if a family is so poor that it must sent its 10 year old to work, there is a systemic problem in that society. Does this kind of set-up help change that system?  There are organizations who argue that the poverty wages paid by some manufacturing plants (this has been argued about Haiti) will NOT allow the people to eventually rise up to the middle class and will only keep them poor.

 More to the point, if kids must go to work not school, how do they ever learn to be doctors, computer scientists, business people, or anything but a sweatshop laborer or slave wage farm hand?

As for the last point: it’s just the way of the world. There’s nothing we can do about it.  We’re not going to stop buying this or that.

Well, ultimately, people can either believe in changing things and take up responsibility for their role in the world, or they can shrug it off and keep going , as is.  I think most of us do a combination of both.

I think when it comes to kids and poverty and their lives sucking, for lack of a better word, I have done too much shrugging . I waant to make 2012  a year where my shrugging stops and  where I learn to spend my time finding what I can do, and do it, instead of wasting mental energy getting upset about cynical statements by others people. Waste of time.

THE STANDARD

I did read one anonymous person on a message board who made a very cool and inspiring and simple statement: he or she recapped how Chinese workers are treated in this one company and said  “If it’s not good enough for me, why is it good enough for the Chinese?’   And of course the answers may be versions of the above points which all boil down to “they’re more desperate than you are. ”   But it gave me a clarification of my internal standard, if that makes any sense, and something I think of sometimes in general with kids and poverty and that is:

If a situation isn’t good enough for my nieces and nephews, it  isn’t  good enough for any kids. 

 I don’t want my nieces and nephews out of school, doing manual labor. I don’t want them picking through toxic trash. I don’t want them in neighborhoods where people are getting shot. I don’t want them eating crappy food. I can’t picture them eating jjust one meal a day. I can’t picture them living on the streets or in cars. I can’t imagine if the girls couldn’t go to school because they were girls, or my oldest nephew was put in an army at age almost 10.  And it is not acceptable to me, my nieces and nephews being sick and unable to see a doctor, or get medicine, or get stitches, or to their lives be threatened by diarriahal diseases or lack of vitamins or because their water isn’t clean. Unacceptable.

That has to be the standard.  That is the standard.

 Obviously, not everything is something I can do something about. But not being able to do everything about everything doesn’t mean I can’t do something about something. And if I stop believing I can do anything about anything, well, might as well hang it up.

So here are my goals:  Just say no to cynicism. Keep in my mind “the standard.” Learn and get involved.

As for you? So many people I know are parents with big hearts already working to help other kids in your community.You have already looked beyond your own offspring.  What kid-helping things do you want to do in 2012? What do you reccomend? What things bother you when you see them?  A new year. New opportunities. New goals. 

One of my goals is also, a year from now, have some concrete stuff  to point to saying I got off my butt and did my bit. We’ll see.

Here’s to 2012 being a busy year.

PBSC Donation: The Road to Day Zero

Here is the latest on Superman Obi Wan Muhammed Ali Houdini 2012, aka, the guy getting my stem cells. His such and such levels are dropping closer to where they need to be, but it is still up in the air if he will be ready to get the transplant. They’re going to do a test Sunday and let me know Monday.

If it’s a go, I’m off to Boston that very day for my first shot of what I like to call  “stuff to make me super-produce blood stem cells.”  Then three days of shots at home.

And then Friday the 27th is D-Day and I think the next day is when Superman gets the transplant. As I mentioned before, they call it his “Day Zero.”  That’s so they can count from there to chart his progress. For example, “You’re at Day 30 and you’re doing good” when he hits the one month mark. In other words, when he gets the transplant, he still has a long way to go. The transplant he’s fought so hard to get to is, in a way, just the start.

That’s really been sticking with me lately: Day Zero. Just get to Day Zero, Guy.

(Please consider getting on the marrow donor registry today.)

While I’m here, let me put up the link to  my PBSC donor entries in order. The main point of this blog  is to let anyone who stumbles upon it see how the process works, how it’s doable, how it’s important. So I wanted to let people start at the start ’cause it’s getting kind of long.

START HERE  and then follow the “previous page” arrows which bring you more and more current. Kind of like Back to The Future. lol.

And  please, take a sec to go to BeTheMatch.org  and order up a home-swab kit and get on the registry. So many people just like you and me – different only because they’re sick— are being told “Chemo can’t help you anymore. You need a bone marrow transplant.”  And they’re learning their loved ones don’t match. And they’re thinking …God only knows what they’re thinking.  

Because the truth is, this dude isn’t Superman. He’s just a guy, someone’s loved one – dad, husband, grandpa, brother, best friend. And there’s thousands of people out there like him– needing a transplant and just trying to get to Day Zero.  You can get on that registry and maybe be the match for someone.  Maybe YOU can get him or her, that mom or brother or daughter or husband or grammy - to Day Zero.  Think about it.

“We’re not too big
And we’re not too tough
But when we work together
We’ve got the right stuff” 

-The Wonder Pets

 

PBSC Donation Postponed

I think that says it all. Got the call 10 minutes ago from Stacey that the Guy has low levels of something in his blood and his doctors aren’t comfortable killing off his immune system yet. He is thankfully still in remission which is essential for the donation to go through.  They are redoing the tests and the new projected donation day is January 25th. 

One thing that made me nervous was they weren’t okay with my donating ahead of time and freezing the cells – which is a common enough thing, I guess – because they can’t say 100% they’re going to use them.  I can’t believe how close this guy got - less than a week - and now to have another setback?  This has to happen for him after all this time. More than a year.  Keep a good thought this is just a minor delay.

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