Update on Beanstalk boy.

Next Wednesday the 2nd of December we will get our tutorial and start the shots right after school.  Leah the nurse will come and show us how to do it.  She says it will take about half an hour to school us in shot-giving.  She also says she has an activity at the Unitarian Church practically next-door to us.  I think I like Leah already.


Jasper/ Beanstalk 3

I tired of waiting around while people who don’t know us supposedly work on our behalf.  Andy tired of not knowing what to do with our Flex account.  I decided I didn’t really care what Lila at Genentech said, the insurance company was who we were waiting for, so I called them.

Rebecca said that BCBS received the request for approval on the 6th of November.  Now, our doctor talked to us on October 14, give or take a day and said he’d pass it onto the blahblah, which I admittedly glossed over and assumed would be fine.  He said we’d hear in a couple weeks.  I was sure by the end of the month we’d be ready to go.

Three weeks later, BCBS hears their first of the case.  Legally they have 7-10 business days to make a call on it.  That’s what Rebecca said, “So I would guess you’d hear something right around the 19th of 20th of November. ”

I looked at my calendar to double check, “Well, that would be more or less… today, right?”  Long, long pause.  “Just a moment.”  Sometimes you have to compose yourself when what you say runs smack into reality.   “You should be able to call this afternoon or first thing tomorrow and find out if it’s approved or not.”    So I guess that’s what I’ll do.  I’ll keep you posted.

Jasper and the Beanstalk (Installment 2)

Last time I jotted down some notes about our great growth quest was around 3 weeks ago.  That was a couple weeks after the last contact we had with  Doctor Tebbin at Mayo.  He said we’d be hearing from someone in a couple weeks.  What he said was, “If it’s Ok I’ll pass your information onto  Genentech, who does a good job negotiating with the insurance company.  The case is pretty clear cut, he’s had the gold standard of testing and he’s 16  years old.  You’ll probably hear from them in a couple weeks.”    What I heard was different.  I heard, “If it’s Ok I’ll get your information to blablabla (where I inserted a random hospital department which deals with the ugly financial stuff).  It’s an expensive treatment and insurance always balks, it’s a pretty clear cut case, you should hear from them in a couple weeks.

I spent those two weeks figuring we’d be starting growth hormone shots in about 2-3 weeks.  Remember, we’ve been working this angle for almost a year and we finally have an answer.  I even bought two pairs of skinny jeans for Jasper’s birthday.  One pair was a size 12 slim and the other was a 14 slim.  The 14 slim was so he’s have a pair to wear when he grew oh-so-quickly out of the size 12’s.  We bought tap shoes in a slightly larger size than he needed so he wouldn’t outgrow them.  We made plans to take his picture every day.

It turns out that Genentech isn’t a hospital department.  It’s a pharmaceutical company which makes the growth hormone prescribed for Jasper.  When they contacted me in two weeks we were no closer to getting the shots than when I talked to the doc.  They needed to email me a release so I could print it off and fax it back to them, giving them permission to see the pertinent information and to talk to Blue Cross Blue Shield.  I did this that day.

That was 3 weeks ago.  I called yesterday to get an update since we need to decide about our Flex account money this week.  If we’re paying out of pocket, we’ll need to max out the Flex money.  Lila at Genentech is always nice and professional, and slightly vague.  I asked her if she had an update and I told her why.  She assured me that she was in weekly contact with BCBS of MN.  I asked what that meant.  She said again that once a week she was in contact with them, usually on a Thursday, to see if there had been any progress.

I couldn’t figure out what that meant, really.  Did she go check a website every Thursday morning?  Did she send an email? Did they send an email to her?   Did she call someone at BCBS?  Did they call her?  When I pressed she said that she actually spoke with someone at BCBS every Thursday to find out if they had made a decision.  So far, they had not, but it generally takes 30 days. That puts us at the end of November, which is bearing down on us here, pretty soon.

What’s more, if they deny, we can appeal.  Appealing takes up to 6 months.  I’m getting crabby.

What the heck is a pharmaceutical company doing negotiating with my insurance?  Shouldn’t that be the doctor’s job?  Or mine?  And when Lila asked me not to call the insurance company because it usually confused them and slowed down the process, why did I listen to that?  It all smells funky to me.

Halloween 2009

Time for my annual Halloween Rant.  Although this year was better than other years, I’ve still spent a good amount of time thinking about why I get so worked up about the whole thing.  I only had to turn away about 10 kids this year.

Every yearI refuse to give out candy to kids without a costume.  The kids are usually outraged, sometimes chagrined and occasionally able to or charm me in some way (I always give the option to do a trick in lieu of having a costume).   But I always end up being tweaked by the behavior of some adults or children.  I decided to try to tease apart what’s behind this.

In  analyzing my righteous indignation I’ve been reminded of a few key points of fact which I  always keep in mind regarding the holiday:

  • Candy is cheap.  It’s about a nickel per piece.
  • I don’t have to give out candy at all.  I can shut the door, turn out the lights and hunker down with a movie like lots of reasonable people do every year.
  • Many people who are driving their kids to my street to trick-or-treat are coming from a neighborhood where they don’t think the kids will be safe
  • I’m not the boss of Halloween.  Even if I were the Halloween Queen, there are not official rules of Halloween which I can enforce.

let me take those points under consideration and deal with them in reverse order.

Queen of the ‘ween I may not be, but there most certainly ARE rules to the festivities.  I am partial to rules, if only so I can acknowledge and then ignore them.  The rules of Halloween may not be widely written or displayed, and they do evolve from generation to generation.In order to set the current record straight, I am documenting the rules of Halloween right here and now.

Rule number 1: People (usually children, but adults as well) dress up in costumes portraying story characters, scary monsters, furniture or something else which they are not in real life.

Rule number 2: Dressed up children walk around a neighborhood, knocking on doors or ringing bells.  When a person answers the door the costumed kids say, “Trick or treat” and hold out their bag or bucket.

Rule number 3: The person who answers the door admires the costumed kid and gives him or her some candy.  Door openers have a container of candy at the ready.  The candy is  store-bought and individually wrapped.  No matter what anyone tells you, pencil toppers are not a good substitute for candy.  Neither are peanuts, bible verses, canned goods or Neccos.  In our neighborhood, however, glow-sticks and fireworks are acceptable.

Rule number 4: Houses where the front porch light is off are not participating.  Do not ring their bell.

Rule number 5:  Parents accompany smaller children, but usually wait on the sidewalk

Rull number 6: Older children may trick-or-treat, but the window of opportunity before they become obnoxious is small.  In these cases, they are usually accompanied by friends instead of parents.  All previous Halloween Protocols are still followed.

As to safe neighborhoods, I can sympathize.  But honestly, it has an much to do with greed as it does with safety.   The kids know who gives out the big candy bars and the best stuff.  My own kids have been known to head to the expensive side of Summit for a little taste of how the other half treats.  They don’t go because 4 blocks south is safer than here.  They go because the want a piece of the pie.

It’s true I don’t have to give out candy at all.  I could shut the door and cocoon for the night, but I love chatting with the kids, seeing the trend in costumery,  and saying hi to the moms and dads who wait down on the sidewalk.  The thought of all that chatting and silliness going on while I sit inside is just too much for me.   I can’t hack it.

Here’s my analysis about why this Holiday gets to me.  The thing is, it’s more than a way to get candy and  dress up.  On a basic level Halloween is a way we show membership in the society we live in.  Sure, some people opt out for religious reasons, some people opt out because they’re cantankerous, some because they don’t approve of the sugar.  I get that, and I believe it’s a valid choice.

But for the people who take part, Halloween is a time we can go to strangers, after dark, knock on their door and have them give us a little present.  It’s a great time to bond with other people, a time when kids and adults can safely express some things.  At it’s core Halloween is a kind of skit, or pantomime about an ideal society.  There are conventions, everyone knows what they are.  In order to keep the society lubed and pleasant we follow them.

Trick-or-treating by the rules says, “Hi.  I’m a membero f this community and I want to play with you.  I know it takes a little effort but I’ve decided to dress up, or dress my kids up, so you’ll know we’re playing the same game, following the same rules.”

When the big kids come dressed in regular clothes, with their big heavy pillowcases held open, that says something too.  What it says is this: ”  I don’t want to be a part of this community, but I want you to reward me anyway.  In this little charade, I expect you to be civil and pleasant, let me harvest some of your good will without giving anything back.  You wanna make something out of it?”

The thing is, I’m only supposed to give candy by the same rules where you are supposed to dress up and say trick-or-treat.  You assume I won’t call a foul because I’m stupid or afraid, or that I don’t have any expectations of my fellow community members.  But I do.  I know most people just shake their heads and seethe about the big kids without costumes.   I have a feeling if more people sent them packing, they’d either stay home or they’d play by the rules.

My sister-in-law gave me a good tip for next Halloween.  I’m keeping a cheap stash of masks by the door, where I can offer it to kids who are sans costume.  I like it.  This year I gave out the most insipid and horrible candy to the kids without costume.  They were marshmallow brains with a powdery anti-flavor.  These things sucked out even the memory of candy you’ve loved in the past. Next year it’s wear a mask or forget the candy.