I first heard about Phil Burns on Twitter about 2 weeks ago when someone re-twittered his most recent post saying that his daughter, Serenity, might have leukemia. And she does. Acute lymphoblastic leukemia. Fortunately, A.L.L. is the more curable type of leukemia, but it involves 2 1/2 years of treatment.

They’re on day 16, and it’s already a haul. Did I mention that Phil and his wife have 8 kids? Here’s a little bit of what they’re dealing with:

So, I cancelled my fantasy of maybe being able to actually go do something with Adria Friday night and got on the phone and started making arrangements for the other kids while I drove home, Adria packed our bags. I got home and we loaded up Serenity and headed to the E.R.. She really didn’t look good. By the time we got to the ER at Utah Valley, the oncologist had already been on the phone with Triage and they knew we were coming. As we pulled up, I had my little speech prepared to keep us out of the waiting room (neutropenic means her neutrophil (a type of white blood cells) counts are extremely low and she has little to no immunity):

“This is Serenity Burns, she was recently diagnosed with Acute Lymphocytic Leukemia, she is neutropenic and is symptomatic of requiring an immediate blood transfusion.”

I spouted that a few times, feeling a bit like Jane from Firefly in the episode where they break into the hospital. Anyway, they sent us into a room to check us in and the first question out of the RN’s mouth after hearing my little speech is:

“Has she recently been on any medications”

I was stunned for a minute, couldn’t think of anything to respond with that wasn’t just rude. After a second I said without further hesitation, ”well, with recently being diagnosed with Leukemia, she is now on chemo, zofran, dexamethazine, prevacid, oxycodin, PEG injections, sephra on mon and tues, and has recently had about a dozen blood transfusions and as many platelet transfusions - but that really hasn’t changed in the last few days.”

Then it was her turn to be stunned and ask me to repeat the list slowly. hehe.

So, in addition to being a web entrepreneur working to launch a new Web 2.0 app, raising 8 kids, and trying to have a life somewhere in there, the whole family is now struggling with a new and very scary paradigm — knowing that the youngest child is facing a disease that can be deadly and can be cured, and the line to walk toward a cure is a very thin, carefully balanced combination of medication, monitoring and love.

Friends have started a fundraising effort to help his family with Serenity’s medical bills. Even with insurance, it’s not a walk in the park.

It feels kind of like a startup company, which I’ve been doing for the last 18 months anyway, it’s familiar territory and I feel kind of comfortable here. Just like a startup, Serenity’s plan involves risk - a lot of risk. But there’s a huge reward and it’s very much worth time, effort and money. Going into this we have no idea how much money it’s going to cost but it’s got to be done and we’ll figure that out as we go - just like an early stage startup. The point is, I feel like I can do this, I’ve been doing it for a long time.

Please consider a donation if possible, and if not, please send good thoughts, prayers, and hope Serenity’s way.

Serenity’s website is here, and you can follow Phil on Twitter here.

Photo credit: Phil Burns

According to Liz, Wendy Portillo has been reassigned. She also has a great post up with much more constructive suggestions to voice your opinion and protest than my rant does.

You can also find a listing of posts at Whitterer on Autism in support of Alex and his family.

I’m still at a loss to understand how any right-thinking teacher could have not only allowed, but engineered this.

Update: 7:19PM From the comments, you can find a more complete list of bloggers here, and you can sign a petition here to request this teacher’s termination.

Since when did Kindergarten become Survivor: Florida? And since when did it become some sort of twisted democracy, where children were not only allowed, but encouraged, to speak their minds about their dislike of a classmate and then vote him out of class?

Well, in Port St. Lucie, Florida, it happened.

PORT ST. LUCIE — Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

Here are some of the words his classmates used to describe him, before they made him walk the Kindergarten plank:

The other students said he was “disgusting” and “annoying,” Barton said.

“He was incredibly upset,” Barton said. “The only friend he has ever made in his life was forced to do this.”

I have some questions about this. Let’s start with this one:

WHY IS THIS TEACHER ALLOWED TO CONTINUE TEACHING?

Let’s see if I have this straight. A teacher allows 16 5-year olds to: a) articulate their feelings and dislikes for another child; and b) vote him out of the classroom? Look at what sparked it:

Steele said the boy had been sent to the principal’s office because of disciplinary issues. When he returned, Portillo made him go to the front of the room as a form of punishment, she said.

Oh, and being ever the compassionate pseudo-psychiatrist-cum-evil-teacher-from-hell, she did allow poor Alex a confessional after booting him off the island:

Barton said after the vote, Portillo asked Alex how he felt.

“He said, ‘I feel sad,’ ” Barton said.

Alex left the classroom and spent the rest of the day in the nurse’s office, she said.

In case you’re wondering, Alex hasn’t been back to school since then. He’s been traumatized. Here are some of the consequences of Teacher Ratchet’s little exercise in community spewing:

Alex hasn’t been back to school since then, and Barton said he won’t be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying “I’m not special” over and over.

Ya know what, Bitch-teacher-from-hell-Portillo-Ratchet-Asperger’s-hating-child-abuser? Let’s bring you up before a group of your peers so they can tell you how much you suck for treating this boy — a child who clearly has behavior and esteem problems — like a sack of shit in front of his peers at an age where he’s unlikely to forget it anytime soon.

Listen up, Portillo. My most vivid memories are of kindergarten, and being smacked across the knuckles with a ruler in front of the whole kindergarten class for daring to speak when not spoken to. My most vivid memories include being beaten up on the playground in KINDERGARTEN, for god’s sake.

My most vivid parenting memories involve being called into school to justify my son’s fight for the right to breathe when a bully put him in a chokehold in first grade, and the only way he could escape was to bite the bully, leaving him branded for the next five years as a hyperactive, at-risk troublemaker while the bully, nearly twice his size, swaggered away scot-free.

Portillo, you’re nothing more than a poorly trained excuse for an authoritarian bitch who shouldn’t be anywhere near children, much less teaching them. If the school district doesn’t see this as child abuse, they’re as ignorant as you are, because it clearly is.

Just so this isn’t anything more than a rant, let me offer some suggestions to you, Portillo. Take some classes in child development, autism and Asperger’s syndrome. Learn some creative ways to build these children up rather than tearing them down. Learn to UNDERSTAND that what you do now will MATTER to them 10 years from now, that you are forming their attitudes toward school, peers, social relationships, and authority.

What you did to this child was to say that the opinions of his peers matter more than the authority of the teacher. You taught him and all of the other children that it was okay to criticize, rather than understand, how it is to deal with a disability. You stood in front of that class and allowed 16 children to consider another child a worthless waste of effort.

Worse still, you abrogated your authority to sixteen 5-year olds.

You ought to be fired, brought up on charges of abuse, and sued for every damn dime you have.

And to the principal of that school? Screw you. Screw you for not standing up for this child when you discovered what the teacher had done. Screw you for allowing any child in your school to be treated with such a lack of respect. Screw you for not understanding how devastating this was.

And finally, to his parents, I am hoping there is a way through this that undoes this damage. Perhaps a public apology to him in front of the classroom and all of the other kindergartners and all of the other teachers would be a start. I hope you can find a way clear to help him understand that he can take something like this and overcome it.

I’m not sure, though. Because that vote — that vote is so horrible to even imagine, that I can’t imagine getting over it anytime soon, Asperger’s or otherwise.

Portillo, you’re evil.

Photo courtesy of the Barton family

If you’re on Twitter, consider following Ted Murphy and Confessionist. They will donate .25 for each person who follows them to Blogher’s Global Giving Online for every person who follows them in the next 48 hours, to a maximum of $1,000 for Ted and $250 for Confessionist.

That’s a potential for $1,250.00 more for that ticker on the widget.

This idea has been met with some questions about whether this is the opposite of the Andrew Baron experiment. My answer is no, because the motivation to hit that “follow” button is charity. You can follow and unfollow any time you want, but if you follow, Blogher’s ticker increases and people are helped. Hungry women and children, those in need of education or just a healthy meal once per day.

All you do is hit the follow button on Twitter. Ted Murphy and Confessionist do the giving. That’s exactly opposite of selling your community. It’s asking the community to join in a common cause for good.

The control is all yours; the cost all theirs.

So go follow, or if you are uncomfortable following, then please, consider a gift for the sake of giving. Let’s ratchet up that widget total by another zero by Mother’s Day.

Thank you, Ted Murphy and Confessionist. (I’d link you but I can’t find one).

Technorati Tags: blogher, hunger, charity, twitter, followers

You scared me there for a minute. Get some rest and back on your feet soon.

The lesson learned: Don’t ignore pain, especially chest pain.

That’s the question Alison Rose Levy poses on the Huffington Post. Here’s my answer.

Dear Alison,

We’re passionate because we love our kids, too, and don’t want them placed at risk for horrible diseases like polio, mumps, and measles that can blind them, render our boys sterile, or cripple them for life. We’re passionate because of the selfish insistence of the anti-vaccination crowd that vaccines cause autism, despite the lack of science behind the assertion, the utter lack of proof beyond anecdotes, and the self-indulgence of people like Jenny McCarthy who claim that not only can vaccines cause autism, but that autism is “curable”, again with no proof.

Anecdotes are not evidence. Anecdotes are like eyewitness identifications in criminal trials, unreliable, unfair, and filtered through the individual bias of the beholder. I repeat, anecdotes are not evidence. On the other hand, measles epidemics are real. And preventable.

Because we live in a society that requires us to interact with others, the refusal to vaccinate children imposes YOUR values on MY community. You devalue the benefit of vaccinations, putting us all at risk.

Now excuse me while I go make an appointment to get a measles booster since I had one of the early vaccinations, and grant me my passion, because until you can prove what you preach, I consider you a danger to society.

Technorati Tags: vaccines, autism, measles, mumps, polio, passion

Here’s a crime alert for all 8th graders: If you buy Skittles in Connecticut schools, you might lose everything. It’s a scandal, I tell you — a SCANDAL.

From Consumer Freedom:

What does it take for a school to suspend an eighth-grader, bar his attendance from an honors dinner, and strip him of his post as class Vice President? If you guessed drugs, alcohol, or a firearm, think again. A bag of candy is reason enough. This week, a Connecticut school levied these very punishments on an honor student with no history of misconduct, just for buying a bag of Skittles from his classmate. School officials are hiding behind their “Wellness Policy”—which prohibits bake sales, classroom pizza parties, and the sale of candy—as justification for the harsh disciplinary action.

As the parent of a Skittle-eating 8th grade honor student who does not hold class office, I object to the Wellness police suspending this student and stripping him of his honors for daring to buy a bag of candy from a friend. Let’s see if we can figure out the message this young man received…

All of your hard work to meet our learning objectives and to demonstrate current and future leadership qualities means nothing, because you did not respect YOUR body enough to keep that nasty sugar out of it.

What crack are those Connecticut school officials smoking? Speaking of smoking, I predicted this would happen when they finished with the tobacco companies and moved on to ‘wellness report cards’. My amazingly fit daughter who dances eight hours or more per week has a broken finger to show for the California fitness initiatives. Thanks a whole heap, California. Still, California doesn’t measure up to Connecticut or some other states, who are convinced that the pathway to wellness can only be forged by suspending achieving students for daring to eat a Skittle.

Thank God it wasn’t a Hershey bar. I’ll bet he’d have been expelled. An apology is in order from school officials, who have mistakenly confused this boy’s Skittles with their crack pipes.

(via BoingBoing)

Technorati Tags: Skittles, middle school, wellness, stupid schools, Connecticut

I wasn’t exactly happy to read that Shire had raised the price of Adderall XR by 33.5%, following the trend of other pharmas to raise prices on medications that are shown to be effective and are often prescribed.

According to the WSJ article, the higher prices are supposed to force patients to new medications as the older ones’ patents expire:

It’s a tactic that pharmaceutical companies use “to shift patients to next-generation drugs by making old ones so expensive,” says Michael Krensavage, a drug-industry analyst with Raymond James & Associates. For example, Sanofi raised Ambien’s price ahead of its loss of patent protection last year so that it was more expensive than Ambien CR, a new formulation, to encourage patients to switch to Ambien CR, which will be patent-protected for several more years.

These kinds of practices are great unless you happen to be one of the schmucks who has to fight like a dog to get your insurance company to approve a medication that works, and still end up paying huge copayments on them.

The moral of the story seems to be this: In the short run, you might save money by switching to a newer med, but in the long run, you’ll save money by sticking with the one that works.

Really, this practice shouldn’t be allowed or tolerated by doctors. Why switch if it works?

Technorati Tags: adderall, adhd, medications, pharmas, price fixing