You Can't Ignore Cancer!

I know, I know, I know!

I have been a huge pain in the... butt.  I've been posting links to this blog to Facebook, I've been emailing them straight to your inbox, I've been accosting people everywhere I go!  The preschool, the YMCA, music rehearsals, the grocery store... and at least a half-dozen people are probably kicking themselves after asking about my St. Baldrick's lapel pin.  I've even sent out good old-fashioned snail mail.

But look!  You're HERE!!!  Good for you!

Hi there, it's me.  AGAIN.  Have I told you about this children's cancer research fundraiser I'm involved in?  It's called St. Baldrick's and it's really, really, really great, and I'm gonna SHAVE MY HEAD, but I want you all to "pay" to see it, so to speak, by donating to St. Baldrick's.  Did I mention that they're really, really really great?  They are, and....

 

I'm even sick of listening to myself.  But I'm so passionate about the cause, so here we go again!  There are just about three weeks left until the event at Dell Children's Medical Center, so this blog is getting close to the end.  Sometimes it's hard to come in during the middle of a story, so here's a friendly posting to get you all caught up.  A primer for first-timers, so to speak.


Who are you?
I'm MamaKat.  I'm a 32-year-old stay-at-home mama in Austin, Texas.  Just your ordinary, everyday suburban housewife.  You might know me from Elmira, NY, or New Paltz, NY, or Boulder, CO, or you might not know me at all.  If you would  like to know my real identity, you can go to:  www.StBaldricks.org/participants/MamaKat      (and don't forget your credit card!)

What is this all about?
I'm shaving my head.  But it's about so much more than that.  I've signed on with St. Baldrick's to shave in solidarity with kids who have cancer and typically lose their hair during treatment, while raising critical funds for childhood cancer research. Furthermore, I'll be saving and contributing this big ol' mop to Locks of Love, wig-makers serving children who have lost their hair for medical reasons.

When?  Where?
I'll be attending the Childhood Cancer Fair and St. Baldrick's Event at Dell Children's Medical Center right here in Austin, on March 19th, 2011.

Why would you do this?  Are you crazy?
I'm doing this in honor of my brother, Stephen Haslett, who the world lost 16 years ago to an inoperable malignant brain stem glioma.  It is empowering to be able to DO something, after the helplessness I felt watching him fight, and finally succumb to cancer.
 

Me, apparently in my awkward Ralph Macchio haircut phase, and my little brother Stephen.  Contrary to what you might think, we often struck this pose when hanging around the house, which is why it looks SO natural.

To read my (as yet, unfinished) account of Stephen's battle, start here:
Stephen's Story, Part 1: A Flashback
Stephen's Story, Part 2: Wait, what?
Stephen's Story, Part 3: Chemo for Christmas
Stephen's Story, Part 4: There goes the hair
Stephen's Story, Part 5: Radiation and Ronald
Stephen's Story, Part 6: A Happy Birthday
Stephen's Story, Part 7: Great Danes and Paper Cranes
Stephen's Story, Part 8: Promises

Stephen's Story, Part 10: Requiem





As far as the second question... truly crazy people are rarely self-aware enough to know that they're crazy.  So I'll just abstain from answering that one entirely.


How can I get involved?
Go to www.StBaldricks.org if you'd like to sign up to shave YOUR head, be an event volunteer, be an event barber, or if you want to do some in-depth reading about the organization.

If you'd like to have a quick overview of what St. Baldrick's is all about, I've summarized it all in a FAQ page (clicks).

If you'd like to sponsor my head-shave, and donate to St. Baldrick's in honor of Stephen (or anyone else that has fought this battle), click HERE!







Thank you for visiting "Buzz For Bubbers," and please, link this to your Facebook Wall, your Twitter, your blog, your MySpace (seriously, you're still on MySpace?) and tell your friends!!!

Cancer Sucks.

At the risk of alienating my most sensitive readers, I've just gotta say it:  Fuck cancer.

If you've been reading, you know I don't throw that word around cheaply.  I don't resort to profanity to shock or offend you.  It's the only way to adequately convey my anger and the profound sense of injustice I've felt while reliving all of this. In fact, if you are so sensitive that the little pixels making up the word “fuck” made your heart skip a beat, I highly suggest that you click on that little “x” in the corner of your screen.

If you are a parent whose child is fighting cancer, I urge you to do so.

I'm not trying to challenge anyone, I'm not daring you to continue on with this post, I'm not trying to get melodramatic.  I'm trying to warn you that I intend to post the most offensive thing that I have seen.

You may recall this photograph from my previous post about Stephen's hair loss: 

January 1995.

And I'm sure you remember this one of Stephen and all of his buddies:

February 1995.

These images, right here, are where most children's cancer charities and awareness groups STOP. When the children are pale, and bald, and obviously ill, but still beautiful little fairy children. They leave you to imagine that the kids who lose their battles fade gently away into the afterlife of your choosing.

The reality is that cancer is ugly. And relentless. And cruel.

THIS is offensive:

June 1995.  And a very good, photogenic day.

Cancer, and it's treatments, didn't stop at taking Stephen's hair. In less than seven months:

It took the vision in his right eye.

It paralyzed his face.

It took the fine motor control from his hands.

It took his ability to sit up unassisted.

It caused the seizures that we sat and watched helplessly.

It filled his lungs with fluid.

It more than doubled his weight, from 48 pounds to 105.

It took his ability to speak coherently.

It put him in a wheelchair, where on the rare occasion that we were able

  to take him out in public, strangers  would assume that he was mentally

  disabled, and would speak to him as such.

It took his immune system, to the point where we were unable to take him

  out at all.

It took his life.

Stephen faced his battle with so much bravery, and so much hope, and so much appreciation for the love from the community that rallied around him.  But he also felt anger at the injustice of his fate, and on just one occasion railed against God.

Stephen and my mother were home, alone, after his radiation therapy had ended.  They had never openly spoken of the possibly of death, despite the homecoming meaning the end of cancer treatment and the beginning of palliative care.

Out of the blue, he asked, “Mom, why does God hate me?”

She was shocked. “Why would you think God hates you?”

“Well, first I get a real nice stereo for Christmas, and God takes my hearing.  Then, I get some cool video games, and God takes my hands so I can't play them.  Then I have this great big TV, and I have to wear a patch over my eye, so it's hard to see....”

He began to cry, which he rarely did.  “Why doesn't he just take my breath and get it over with?”

“God doesn't hate you,” my mother said, holding back tears of her own.  “He is waiting for you, with open arms to welcome you.  He loves you very much.”

Stephen never mentioned God again.

No child should ever have to beg God to let him die.

I've been trying to end all of my posts on an upbeat note.  I can't do it today.

Instead, here's something empowering we can do.  I've been linking this blog on Facebook to the point of annoying, and I'm sure that some people have started to scroll right on by. Or have maybe even chosen to “hide” me. And that's ok. Understandable.  This hasn't been a "fun" blog, and not everyone can handle it.

For that matter, I don't even know what sort of algorithm Facebook uses to decide what posts appear where anymore – all I know is that I haven't seen every update that every friend types.  They've changed the News Feed so that by default you can only see updates from people you have recently interacted with.  So I'm not sure who is even aware that this blog exists.  Short of sending all 275 of my friends a personal message, there is only one way I can think of to get everyone to sit up and take notice.

Today's post would be one hell of an intro to anyone who'd never been here before... so TOMORROW, Tuesday, March 1st, I will post a Buzz For Bubbers update, titled “You Can't Ignore Cancer.”   

Please.  Link that post to your Facebook page.  Request that your friends and family share it as well.  I'd love to open my page on Tuesday, March 1^st, and see that message repeat itself over, and over, and over again, 200+ times down my computer screen.  Alternately; tweet it, text it, email it, feature it on your own blog... just get it out there!

It's so quick.  It's so simple.  And if you want to follow it up seconds later with the typical “I'm eating asparagus,” or “The temperature in Decatur is 47 degrees below zero,” or “My kid just pooped on the floor and it was sooo cute, lol,” go right ahead!  I'm just asking you to put it up there.  Just for a second.

There are less than three weeks left.  We are getting close to the end.  I'd like to thank you all, again, for reading, and for doing so much to help me help these kids! 

To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!

Weekend Update -- Week 5

I was hoping to have some super-exciting fundraising news to report tonight.  I've got a few irons in the fire, but at the moment, I feel like I am waiting, waiting, waiting....

Good things come to those who wait.  Isn't that how the saying goes?  Or does that only apply to ketchup?

 Or, no, Guinness!  Yeah... that's the one I was thinking of.

Yeah, that's the one.  Mmmm, Guinness.  Much more fitting for St. Patrick's Day, too.

Anyway, tonight I wanted to make a point of thanking everyone who has reached out to me in the last month.  I have gotten so many emails, Facebook messages, and IMs from far-reaching friends, family, long-lost acquaintances, and even a few from complete strangers.  Some have expressed appreciation for all of the work that has gone into this campaign, especially writing this blog.  Others are touched by my willingness to go so far as to shave my head to champion this cause.  Some expressed regret at not really knowing what was truly going on in my life while this was happening, or how to support me during Stephen's illness.  And still others shared their personal experiences with cancer -- as patients, as survivors, or in remembrance of the loved ones that they have lost.  I treasure every kind word that each you has written, and plan to file them all away together somewhere where I can pull them out on gray days.

Just today, I received an amazing letter from an old friend.  I mentioned him in this post.  My first exposure to St. Baldrick's, and my inspiration.  I never knew the story behind Ian's involvement until this afternoon.  He has granted permission for me to share it here:

Howdy Kathleen!

  Do I remember you?  Of course I remember you!  You birthed my glorious bartending career which culminated only a year ago when I graduated from CU.  

  
  I was initially surprised to hear that you were inspired by my St. Baldricks fund raising back in 2006, but after reading your blog and learning about Stephen it made a little more sense.  I thought I would share why I was inspired to participate 5 years ago.

  Back in the summer of '94 when I was in between my Junior and Senior year of high school I became close friends with Kelley Roswell.  She was someone whom I had known since Jr. high and we had mutual friends but never really hung out with each other. She was the star athlete/student council type and I was the insecure cocky jock type (I KNOW, hard to believe RIGHT?).  We connected over the summer due to our both breaking up with our respective boyfriend and girlfriend. We quickly became best friends and have remained so for the last 17 years.  I stood in her wedding in '99 and she stood in mine in '02.

 

  If there is anything that I can say about Kelley is that she is and has always been the most driven person I have ever met. She aced high school while playing four sports and the tuba in band, graduated from CU in four years on academic scholarships and went straight to medical school in Minnesota where she finished in the top of her class.  Now, everybody knows someone who is just naturally a gifted overachiever, people who work half as hard as you do and somehow do twice as well. Kelley has never been one of these people.  Kelley simply works harder than anybody else is willing. Period.  She is tenacious, disciplined, and tireless. She has bled for everything she has achieved.  

  
  This unflagging work ethic stems from Kelley's battle with childhood cancer.  She was diagnosed with ALL or Acute Lymphoblastic Leukemia when she was in the 5th grade. Kelley's fight with this disease lasted over three years and consisted of weekly trips from Grand Junction, CO where we grew up, 4 hours over the mountains to Denver Children's Hospital to receive radiation treatments and spinal taps, multiple weeks at the Ronald McDonald House here in Denver for chemotherapy, shortly after which she relapsed in the 6th grade and was forced to begin the radiation therapy again and received a second round of chemotherapy.  

  
  When I met Kelley in the 8th grade she had been in remission for about a year.  She was already determined to become a pediatric oncologist at the Children's Hospital to help kids fighting cancer just as the staff at Children's had helped her.

  Fast forward to today, Kelley runs the Emergency Department at the Denver Children's Hospital.  After residency she realized that she was more suited to Emergency Medicine than oncology (the smell of chemo drugs held too much bad nostalgia) and did a three year fellowship to become an Emergency Pediatrician.  Hand on my heart, she literally saves kids lives on a daily basis and I can't think of anyone else I have more respect for.

  So in 2006, I raised money through St. Baldricks and shaved my head partly in honor of my friend Kelley as well as my Mom who battled breast cancer back in '99 while I was in the Navy. It seemed like a small gesture only before I attended the event at the Boulder Theatre.  It was a truly moving experience sitting there with my Mom, Kelley, and her daughter Logan listening to the stories of true heroics performed by everyday normal people. People like your brother and your family.  Shaving the hair off my head in a room surrounded by these people was easy.

  So I salute you Kathleen!  It's an amazing event and an amazing organization and my donation is on its way. Incidentally, after both standing in each other's respective weddings, we similarly supported each other through our respective divorces, and in June of 2009 Kelley and I married each other, easily making me the happiest, luckiest dude on the planet.  Hands down.

  I wish all the best for you and your family!  

ian capps




How incredible is that?  See, not only does curing childhood cancer save the children themselves -- it allows them to go on to become heroes in their own right.  And the love of someone's life. 

Ian's St. Baldrick's "before" photo

And Ian's "after!"

Tonight's updates:

Donation total: $4407 (still not including the matching funds in the ether)

This weeks donors were also leaning toward the pro-shave side, bringing the totals to:
     Yes, shave it!    =   239
     No, just a trim!  =  202

Only three weeks left to "talk me out of it" if you're so inclined! 

 

This experience, from the beginning, has been about so much more than the bottom-line end result dollar amount that I raise.  It has been about raising awareness and making connections, and rekindling friendships.  Please keep the personal messages coming, if you are moved to do so.  I thrive on them! 

Love to all!

To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!

Stephen's Story, Part 7: Great Danes and Paper Cranes

I'm not sure if this is particular to me, particular to youth, or something that everyone who has lived in upstate NY experiences equally, but the springtime has a breath of its own.  The mornings start off cold, but somehow soft.  The early sun intensifies quickly, and the change of season becomes almost palpable behind your breastbone.  There is an aching, a yearning, a desperation to escape the gloomy confines of winter, and spend every moment out in the open air.

Spring of 1995 was no different in that respect.  I'd wake with that same enthusiasm for starting a new day, but also with the nagging feeling that there was something forgotten, something wrong.  And then, with full consciousness, came the realization that would crush out my exuberance:  Stephen was dying.

It wasn't happening all at once.  In fact, after the initial shock of his illness settled in, the rest of the changes came on steadily, but so gradually, that it was easy to go into a complete denial that it was going to happen at all.  I had myself convinced that his illness was just a new "normal" for our family, and that his palliative care could go on perpetually.  That the biggest challenge was going to be keeping him comfortable and entertained.

Playing a drawing game we'd invented to pass the time.  I also spent literally weeks of my life being Stephen's "hands" and playing Donkey Kong Country on the Super Nintendo.

A wheelchair ramp was built from our front step all the way down almost to the busy street in front of our house.  We'd get Stephen outside for short periods, and take him for walks around the neighborhood.  On one occasion, a good, kind friend of mine brought over Joe, his Great Dane, to "walk" Stephen.  Stephen held onto the leash, and grinned his one-sided grin as Joe pulled his wheelchair over the bumps in the sidewalk.  He'd never seen such a huge dog, and Joe was so friendly.  He'd lay his head in Stephen's lap, and let him scratch him around the ears.  But Stephen was getting heavier, and tired easily even just sitting up, so these outings were getting shorter, and harder.  

Stephen's friends, the 6th graders at Hendy Avenue elementary school, were also holding out hope for a miracle.  Everyone was feeling powerless.  The kids cared so much for Stephen, but didn't know what they could do for him.  They tried coming over for visits, but  it was getting uncomfortable for everyone.  Stephen wasn't physically able to play.  He had little to talk about, outside of how he was feeling or maybe the latest ball game score, and the kids were old enough, and just getting socially aware enough, to feel guilty talking about all of the fun he was missing at school.  In the awkward silences that ensued, they'd just sit, trying not to stare at how much Stephen's appearance had changed.

In school, the teachers read Sadako and the Thousand Paper Cranes.  The kids got to work creating a Senbazuru, a group of one thousand origami paper cranes held together by strings. An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish.  Stephen's friends had a collective wish for him: that he would become well.  He'd sit with them on the sun porch in front of of our house, watching traffic go by, and enjoying the spring breeze blowing through the open windows.

Hendy had such an amazing, supportive teaching staff, one that handled this occasion with so much grace.  If any of you are out there reading tonight, I'd like to thank you again for all you did for Stephen, and for our family.  It hasn't been forgotten.   





Click here to read other installments of Stephen's Story:
Stephen's Story, Part 1: A Flashback
Stephen's Story, Part 2: Wait, what?
Stephen's Story, Part 3: Chemo for Christmas
Stephen's Story, Part 4: There goes the hair
Stephen's Story, Part 5: Radiation and Ronald
Stephen's Story, Part 6: A Happy Birthday

Stephen's Story, Part 8: Promises
Stephen's Story, Part 9: The Long Journey
Stephen's Story, Part 10: Requiem






To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!

Stephen's Story, Part 6: A Happy Birthday

I wish I had more medical stories to tell. More diagrams to show, more terminology to define, more procedures to explain. Unfortunately, the cancer treatments had reached their end. The experimental protocol yielded no result. Stephen's tumor had not only failed to respond, it was continuing to grow. He was exhausted. He was lonely in the company of only my mother, and living in a place that, while comfortable enough, was not home. He missed his room. He missed his friends. He missed his dog.

It was the last week in March.  After a long discussion with his oncologist, and with my mother and father, Stephen made a decision. He wanted to come home. 

He was back in time for his 12^th birthday, so it was time for a party and a big welcome. As a surprise, a chartered school bus carried Stephen – and every single other kid in the sixth grade at Hendy Avenue School – to the Arnot Mall for a private theater showing of “Man of the House,” starring Chevy Chase and Jonathan Taylor Thomas. He felt like a rock star with an entourage.

Waiting for the movie to begin.

The party continued after the movie, to a catered lunch in a private banquet room. At this point he was in a wheelchair, and unable to run and roughhouse with the other boys. His classmates swirled around him, excited by the novelty and adventure of the field trip. But his best friend, Geoff, and his cousins, Rob and Dan, stayed loyally by his side the entire time. His girlfriends would venture up to speak to him for a few minutes here and there, and would drift back to the safety and tinkling laughter of their little pods of friends. Stephen was having a hard time hearing amid the din of dozens of voices in the large room, and didn't have much to tell anyone that they could even remotely relate to. I imagine he was probably relieved that the kids were distracted by each other.

Finally, it was time for cake. Twelve candles burned, and suddenly, all eyes were on him. The banquet hall echoed with the “Happy Birthday” song.

Stephen blew out his candles, and everyone waited expectantly. His voice barely above a whisper, he said, “I'm just... I'm just so glad you're all here.”  His voice broke on the last word.

Opening a few gifts.

Two days after his birthday, two representatives of the Make-A-Wish Foundation arrived at our home. It seems that Make-A-Wish gives just about every kid with a terminal illness a trip to Disney World, but for Stephen this wouldn't be possible. The risk of cabin pressure loss in an airplane could be dangerous to his diminishing intracranial space, and the trip was too long by road. And how much would he be able to really experience, confined to his chair? 

Instead, they brought sports memorabilia. Tons of it. Stephen was hugely into sports card collecting, and throughout his illness -- even before he became ill, would spend hours organizing and reorganizing his treasures into their protective sleeves. Now, he had more cards... and hats, and jerseys, and jackets, and wall plaques, and figurines. The ultimate gift, the thing that Stephen would enjoy more than any other, was a 54” rear-projection big screen television. 

Spring training was just drawing to a close, and the Major League Baseball regular season was about to start. It was perfect.

And for the time being, we were all still in denial that he wouldn't see the Series that year.

To learn more about the Make-A-Wish Foundation, go to www.wish.org

Click here to read other installments of Stephen's Story:
Stephen's Story, Part 1: A Flashback
Stephen's Story, Part 2: Wait, what?
Stephen's Story, Part 3: Chemo for Christmas
Stephen's Story, Part 4: There goes the hair
Stephen's Story, Part 5: Radiation and Ronald

Stephen's Story, Part 7: Great Danes and paper cranes

Stephen's Story, Part 8: PromisesStephen's Story, Part 9: The Long Journey
Stephen's Story, Part 9: The Long Journey
Stephen's Story, Part 10: Requiem

To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!

Weekend Update -- Week 4. One month to go!

Today is February 18th.  The Children's Cancer Fair and St. Baldrick's Event at Dell Children's Medical Center takes place on March 19th.  We have exactly one month to go!

February is a short month.  So in this case, a month is only four weeks!

I'll be keeping it short tonight.  I'm beat.  In the last two days, I've resumed my fundraising with a new vigor.  Time to kick back and enjoy a Friday with my husband.  Hopefully, my "second wind" of efforts will  be fruitful.  I had no idea when I got started how much work I'd put into this -- or how much I'd enjoy the busy-ness!


I have a quick and amusing story to relay.  I started my personal training at the YMCA this week (remember, I'm hoping that a lean, strong profile might help me pull off having short hair -- or none!) and my trainer and I sat down to go through the initial paperwork.  She asked for my fitness goals.  I guarantee that she was expecting the typical "I want to lose weight/run a marathon/lift a SmartCar."  There is no way to adequately describe her facial expression when I replied, "I want to look good bald."  She was utterly perplexed.  I left her to stammer for a few minutes before I let her off the hook and told her what I'm up to.

"You want to... bald... WHAA...?!?!?"

In other news, Google's Blogger program allows you to track all of your blog traffic.  While checking out my stats this week, I realized you could see where in the world your viewers are looking on from.  "Buzz for Bubbers" is being enjoyed in the United States, Canada, the U.K., Germany, France, the Netherlands, Denmark, South Korea, Lithuania, Romania, Finland, South Africa, and the Bahamas.

So... Hi, hello, 'allo, guten tag, bonjour, hoi, goddag, an nyeong, labas, buna ziua, hei, goeie dag, and...wait.  The Bahamas??? 

Dude.  Step AWAY from the laptop.  You're in the Bahamas.

"Ahhhhhhhh..........  Hey, I wonder if that lady in Texas is still blogging about cancer?"

Anyway.  Tonight's updates.

As of a donation made WHILE I've been typing this blog post, my donations have reached $4000!!!  Plus, there's another $150 floating around out there in the ether in the form of company matching funds.


My latest donor was decidedly pro-shave, bringing the totals to:
     Yes, shave it!    =   211
     No, just a trim!  =  187

Okay, turn you head on more of a slant...  Now, make a fist. Slowly ease it up underneath your chin.   Now, just imagine you're weightless, in the middle of the ocean, surrounded by tiny little seahorses.  *click*

Thank you all for another uplifting week.  I hope you'll hang in there with me for this last month!  And wherever you are, I hope your spring arrives soon!





To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!

St. Baldrick's FAQs

St. Baldrick's???  Never heard of 'em.  Are they legit?

Yes.  They're largely volunteer-driven, which might be why you haven't heard of them until now.

The lack of widespread advertising keeps their overhead costs low, meaning that the maximum amount of donor dollars can go to the important stuff -- the research grants!

They are an IRS accredited 501(c)(3) tax-exempt non-profit organization, and are in good standing with the Better Business Bureau.

IRS letter
501(c)(3) accreditation
BBB charity page



How did you hear of them?

Word of mouth.  In fact, I wrote a blog post about that early on.  You can find it here.  I've been sitting on it for five years, waiting for the right time to get involved.  Now is that time.



Where does the money go?

St. Baldrick's funds are granted to some of the most brilliant childhood cancer research experts in the world to find cures and improve the quality of life for patients and survivors. The Foundation funds more in childhood cancer research grants than any organization except the U.S. government.

St. Baldrick's financial details



Will my donation be tax-deductible?

Yes!  And if you are donating your time as a licensed barber, your time is tax-deductible as well!



I'd like to give, but money is tight right now.  How else can I help?
Every dollar makes a difference, and every dollar is appreciated.

If you are able to afford a small donation, ask your employer or HR department if they offer matching donations to double the amount you ultimately give.

Email a link to this page to your friends, family, and co-workers.  You never know who this cause might strike a chord with, and it costs you nothing.  Remember to use social media -- your Facebook account, your Twitter account, or however else you keep in touch.

Go to www.StBaldricks.org and see if there's an event scheduled near you.  There are plenty of ways you can volunteer your time, without shaving your head!



This page is under continuous construction -- have any questions about St. Baldrick's?  Ask away!  I'll get you an answer immediately.

Where was I?

Obviously, my brother's cancer didn't excuse me from seven months of living my own life.

Halloween 1994, two months before Stephen's symptoms emerged.  Ages 16 and 11.

I was sixteen, and a junior in high school at Elmira Free Academy.  I was in mostly AP courses, and missing much school would have left me struggling to keep up.  I was already having a rough time in pre-calc (although struggling for me meant "Bs" -- as I was still very much a perfectionist back then).

I had just finished what would be my last season as a cheerleader (yes, shocked gasps from everyone who didn't know, and couldn't imagine it;  I was a cheerleader -- it was a bad habit I picked up in middle school), but I'd been struggling with being "cheery" for some time.  The cancer diagnosis clinched that I was officially done with that chapter of my life.  No more pep-rallies, no more bonfires.

Whew.  It's actually a relief to get this skeleton out of the closet.

I was a flutist in the symphonic band, probably the loudest (not synonymous with "best") alto in the concert choir, and a member of the Monday Night Group -- our high school's version of Glee.  I was thankful that cheerleading had spared me from having to participate in the marching band, but I was at some point involved in just about every other musical opportunity the school offered.  I skipped having a lunch period so that I could enroll in art classes as well -- these academically "unnecessary" courses seemed to be an either/or proposition at EFA.

I worked at Campus Pizza, a job I'd held since my freshman year.  I spent twenty hours a week folding towering stacks of pizza boxes, answering greasy phones, cleaning the dining areas, and food-prepping.  I was planning to buy a car, if I ever got around to saving any of the money I'd made.

I did a lot of my thinking, and a whole lot more not thinking, hypnotized by the thud of my own feet on pavement while I was running.  I sometimes ran five miles a day -- ironically, always with a pack of cigarettes tucked into my waistband.  I really picked up a full-time smoking habit that year.  But I genuinely thought that if my exercise kept pace with my smoking, it wouldn't harm me. 

I enrolled in lifeguarding/water safety/basic lifesaving courses at school, and feel like I spent hours at the pool.  My certifications would allow me a change in scenery, come summer.

I was keeping BUSY.

It's funny that I remember all of these things, because my memory of where I spent my nights is very spotty.  At the start of Stephen's treatments, he and my mother were away in Danville during the week.  My father and I remained at home, in some sort of awkward domestic arrangement where he went to the office every day, and in the lulls between my other activities, I was home, cooking and keeping house.  We had dinner together, but I don't remember any conversation.  I'm sure we watched television together into the night.

Every other weekend, he'd leave and travel to Geisinger to help my mother out.  I only remember coming along once, the time I got to see the Ronald McDonald House.  I jogged the winding uphills and downhills of the narrow streets of Danville.  The whole family went out for a pizza.  Stephen was very tired, and very occupied with the attentions of my parents.  I sat at a picnic table outside of the hospital, and smoked, and thought to myself that it'd be a good idea to stop.  I made a promise into the wind that if Stephen lived, I would quit.

The weekends between my dad's visits, my mother and Stephen came home for a short rest before the next round.

Later, my father would join my brother and mother for weeks at a time, but it was decided that I would continue to stay behind, so as not to miss school.  I kind of drifted around from place to place.  On weekends, I'd stay with friends for a night here and there.  For a while, throughout the weekdays, I stayed with an aunt, uncle, and cousins across town, but this arrangement was tough on everybody because I wasn't driving yet.  I'd only had my learner's permit for a few months when Stephen became ill, and my driving lessons had come to a halt.  I depended on my aunt to drive me from the far south side of town to the north, and back, and it was difficult to keep up with my hectic schedule.  This, combined with her inexperience with the moodiness of girls, especially teenage girls, and especially teenage girls in turmoil, made this a short-lived arrangement.

Next, I stayed with a friend who lived a few blocks from our home, close enough that I could walk back to my house to collect any necessary provisions or do a load of laundry.  I crashed on her bedroom floor at night.  In the morning, her dad would drive us to school, Billy Joel blasting on his stereo, which we found hilarious.  We had some fun times.  But it certainly wasn't the most comfortable arrangement.  I wanted to be in my own space.

Finally, I began to stay alone in my home.  It was quiet and familiar... but lonely.  One weekend, I invited a few girls to stay with me.  They brought beer, boyfriends, and a camera.  They just wanted to capture the moment -- but my mother was less than appreciative of their company when she found the photo doubles they'd insisted I have.  Ugh.  No more staying home alone for me.  Unbeknownst to me, this was about to become a moot point.

My parents' home in upstate NY.  It was pink at the time... and was soon to have a wheelchair ramp to the front door.

I know that everything I've written so far reads as if I was always there, but I really feel like through all of Stephen's treatments, I was on the outside looking in.  Perhaps if I could go back, I would have been that ever-present fly on the wall, tagging along to the hospital, and putting my life on hold.  I'd have taken in every moment, captured it, and tucked it away into my mental scrapbook.  But that's not how it happened.  Fortunately, I had an opportunity to make up for a little of that lost time, and the wisdom to realize that all of it had to count as "quality." 

Unfortunately, it was because the treatments were not working.

Stephen came home.





To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!

Weekend Update -- on Friday! -- Week 3

I can't believe another week has passed already.

For that matter, I can't believe that it has only been three weeks that I've been actively fundraising.  It seems like it's been my full-time job for an age.  Either way... it's movie night, which means I'm going to be subjected to Toy Story 3 for the 182nd time (seriously, I don't even cry anymore), and therefore have the time to peck out an update.

Oh, how my Friday nights have changed.

So, what news do I have to report this week?

I received an email from the St. Baldrick's coordinator Dell Children's Medical Center event, and learned more about what will be happening on March 19th.  This is SO much bigger than I was anticipating!

My mental image was of a couple hundred people in a cafeteria/lounge area, with some Irish music playing, some makeshift "barber" chairs on a riser, and a few trays of finger foods.  But here's an excerpt from my email:

"The event takes place at the outdoor Healing Garden at the hospital, near the outpatient parking lot.  It is a large open area that can be seen by the patients.  The St. Baldrick's portion is the second half of the event.  The whole event is called The Childhood Cancer Fair and St. Baldrick's Event.  All of our patients and families on and off treatment are invited for a fair-type atmosphere.  The booths are done by different foundations and organizations that support childhood cancer patients.  We usually have about 500-700 people in attendance -- local firefighters will be there, and bouncy houses, dunk tanks, and fair-type food!  It is a blast and amazing when our patients are having fun and seeing all of us shave in honor of them!!  Patients come down from the hospital and enjoy the fun."

So please, Austin people, come to Dell (with your kids!) if you can.  It sounds like a great time.  We'll probably arrive around 11 so I can get checked in, and we'll stay as long as my littlest guy will tolerate not napping.  We may even drag along his stroller -- maybe, just maybe, he'll conk out in there.

FYI:  If it rains, the event will be rescheduled for April 2nd!

And please, if you or your child has a cough, cold, fever, or viral illness, STAY AT HOME.  You'll be missed, but some of these kids have such an impaired immune system from their cancer treatment, exposure to your sniffles could have very serious repercussions.     



In other news, St. Baldrick's NEEDS volunteer barbers for the Dell event.  At this time, they have only TWO signed up... and seventy-one "shavees."  A complication to finding barbers is that it takes place the same weekend as SXSW (that stands for "South By Southwest" for the uninitiated -- Austin's premiere annual music event).  I attempted to get one very high-profile local salon chain involved, but they declined.  Luckily, I have other leads!

If you happen to know a licensed Austin stylist who might be interested (and mention that their time is TAX-DEDUCTIBLE!), please have them get in touch with Chandra, whose contact info can be found HERE!  Tell her I sent ya! 

Yep, all barbers must be licensed, for liability reasons.  Even though the level of skill shown here will NOT be necessary.

Here's what you've been waiting for!

My donations total $3404.  The website reads $101 less, but the check's in the mail -- the hubster secured the matching donation from his employer, and subsequently doubled his vote as well!  Don't forget to ask your employer if they match donations!!!

Where Does the Voting Stand?  
The spread has stayed constant:
     Yes, shave it!     = 149
     No, just a trim!  = 175

There were 5 abstentions.

Looks like I might not need to increase my hat budget after all....

I'm smiling in this picture!  You'll have to trust me on this one.

As anticipated, donations have slowed to a trickle.  I knew that they couldn't possibly have kept up the frenetic pace that they started off with -- I was spending nearly as much time sending off "thank you" messages as I was writing blog posts!  Keeping with the water analogy, though, please remember that every drop in a bucket will eventually cause it to overflow.  Please consider donating to the cause, no matter how little you can spare.  And please remember to pass this info on to your family and friends!

Thank you all again, and have a fabulous weekend!





To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!

Erleichda*

Time to take a break from the heavy stuff again, as hopefully we'll be having some new readers join us in the next few days.  The mid-point of a cancer treatment is a tough spot to jump into a story for the first time. 

For those of you just joining us, welcome!  This is me with my brother Stephen (and my dad), probably around 1993.

The hubby and I have been staying up late cutting out hundreds of  little business cards we printed at Kinko's  (you know, because cutting them out yourself saves you $10... but takes up two hours of your life.  That's less than minimum wage, but I can watch The Daily Show in my sweats.  I feel like I broke even.)

Then we stapled them to the 150 St. Baldrick's flyers that came in the mail.

Each "shavee" is supposed to receive a welcome packet with a short stack of pamphlets, some fundraising tips, and a lapel pin.  I got my first packet a few days after I signed up.  Then a few days later, another.  After the third came, I called them to let them know that by some glitch, I'd gotten extras.  They told me that they'd looked into it, it wasn't widespread, it was just happening to me, and that they'd fixed the problem.

Then two more came!

So... if anyone wants to wear one of my spare lapel pins (I have three, after hubby and I each wear one), let me know.  I haven't checked my mail yet this week -- I'll let you all know when more become available.  :)

I've distributed the pamphlets at kiddo's preschool, with the wind ensemble I belong to, and plan to carry a few around "just to have" and distribute when the moment seems right.  I'm really trying hard not to be a heavy-handed solicitor.

Anyway.  On with the superficial post I'd planned for tonight:  BALD WOMEN!**

Or more specifically, bald famous women.  We'll start with the actresses who immediately come to mind:

Sigourney Weaver in Aliens 3.  Remind me to stay backlit around a functioning smoke machine if I find myself hairless.

Demi Moore, after G.I. Jane.  This is the reason I joined a gym last month.  I'd much rather have awesome defined shoulders, and avoid looking like a bowling pin with a face.

And the actresses whose "bald" phases are a little more obscure:

Cate Blanchett is amazing and talented, although I've never seen her movie "Heaven."  She looks a teensy bit like Hannibal Lecter here, though.  (Shudder.)

Ellen Page cut her teeth (and her hair) in the movie "Mouth to Mouth, " which is also on my to-see list now.

Samantha Morton in "Minority Report."  With that weirdo couch-jumping guy.

Mena Suvari, who shaved her head in a bid to get more serious "character" roles, instead of "pretty girl" roles.  I don't think it worked, as I haven't seen her bald on screen.  

Then there are the musicians:

Grace Jones, who terrifies me in nearly every photograph except for this one.

Sinead O'Connor, who shocked everyone with her shaved head, without being terrifying.

Melissa Etheridge, who "legitimately" lost her hair to cancer for a while -- and survived to keep rocking.

And last but not least, a couple models:

Eve Salvail.  Gorgeous.  And feeding a tiny tiger.  Aww.

And Kanye West's model girlfriend, Amber Rose.  Who just TODAY leaked her nude photos onto the internet.  How fortuitous!  And w-a-y more than I needed to see.  Stay classy.  (Image removed:  Too many skeevy people directed here as a result of "Amber Rose Nude" image searches.  Eww.)

By far, Natalie Portman is still my favorite.  I choose to look like her.

Totally adorable.  Be sure to tell me how much alike we look if I end up bald, okay?

I hope I succeed in lightening the mood a bit.  Next post:  Weekend Update!  See you on Friday.  (Maybe.)




*Thanks to Pam-cakes, for a reminder of something I shouldn't have forgotten.  :)

**I don't even know how to BEGIN getting license/permission to use these widely-available internet images.  If you own the rights to these photos, and want to demand that I remove them from my CHILDHOOD CANCER RESEARCH BLOG, please contact me, and I will remove them post-haste.  Have a lovely day!





To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!  

Stephen's Story, Part 5: Radiation and Ronald

Stephen's chemotherapy treatments continued on through the winter.  Northeastern winters are cold, dreary, and seem to drag on forever.

That year, the "forever" was a mixed blessing, in a way you only understand once you know your days are numbered.

Stephen, showing off his new look.

After the sixth treatment, we had a brief reprieve: the tumor had stopped growing, and even seemed to be shrinking a bit.  But by the eighth round, its growth had resumed -- or in Stephen's words, "my tumor grew a tumor."  It was time to change course.  The oncologists switched over to the radiation portion of his treatment plan.

Radiation requires an incredible degree of precision.  The basic intention in "zapping" any cancerous growth is to scramble the DNA of those rogue cells, in hopes that it will both kill the existing cells, and prohibit the division of any new cancerous cells.  Understandably, anything that would damage cancer cells would destroy any neighboring healthy cells as well, should they be hit with the radiation beams.  Millimeters count.  Micrometers count. 

A mesh screen mask was molded to the exact shape of Stephen's face and head.  This mask would be secured to the radiation table during therapy, preventing motion to the extent that was possible.  (Thankfully he was not claustrophobic -- just considering this makes me a bit anxious.) Using a "map" of Stephen's brain, created by the extensive series of MRIs he'd endured, the oncology team was able to pinpoint the exact location of the tumor.  An X literally marked the spot.  Visible red beams of light would cross and crisscross his face and head until the exact location was lined up, Stephen would take a breath and hold very, very, very still, and... the radiation would be transmitted for 15 seconds.

A radiation mask (not Stephen's).  As before, you can do a Google image search to see one in use, but I found them a little too disturbing.

The radiation began March 10th.  He had 15 seconds of radiation, 5 days a week.


What to do with the other 23 hours, 59 minutes, and 45 seconds of each day when you're so far from home???

Live at the Ronald McDonald House.

Let me start off by saying I've got no love for McDonald's restaurants.  In fact, if you'll indulge me in an aside; before my older son was reading, he used to point out signs as we drove around the city, and demand that we tell him what they said.  We taught him that the Golden Arches meant "Yucky Hamburgers."  It wasn't long before he was asking, "Mama, why are there so many yucky hamburgers?"  He's still never eaten at one (although we feared that might bite us in the tuckus at some point on our cross-country road trip). 

The Ronald McDonald House, however is fantastic.  The organization is another 501(3)(c) non-profit, who happen to receive the lion's share of their funding from the McDonald's corporation, their franchisees, and a huge network of employees who volunteer their time and talents for the good of sick children.  They felt it was their due to adopt the McDonald's name.

My mother and Stephen lived in a Ronald McDonald House for the better part of three months.  The basic rooms were very much like a hotel, but the suites for long-term stays consisted of three rooms -- a living area with comfortable pull-out beds, a kitchenette, and a large bathroom.  It cost just $8 a night.

This private space was in addition to use of the rest of the house, which was huge, open, bright, and airy.  The communal space included a cozy family room crammed with soft couches on which to sit, visit, and chat with visitors or other families.  It had a toy room with a television and video library.  You could soak up the sun's rays in the atrium, or on warm days, play outdoors on the kid-safe, handicap-accessible playscape.  There was a library full of books.  Laundry facilities were free and on-site.  The immense and immaculate communal kitchen was stocked with all of the basics: milk, bread, fresh fruit, juices, coffee, tea, and all the imperishable dry and canned goods you'd expect in your own pantry.  Nothing fancy, but enough to eliminate the need to grocery shop when you've got more important things to tend to. 

The house was very secure, with a round-the-clock staff who'd buzz the guests in and out.  They even had their own shuttle to and from the hospital (again, handicap and wheelchair accessible) that was available 24/7.
The staff was warm and understanding.  In fact, the director herself was a cancer survivor.

Stephen was able to meet other children with life-threatening illnesses, and see that he was not all alone with his affliction.  My mother was able to commiserate with other parents, and very occasionally step away for a moment here and there to catch her breath.  At that point in time, there was no better place for them to be.

Doing his best E.T. impression, in the Ronald McDonald House toy room.

They became close with another family at the Ronald McDonald House, the family of a little boy named Devin.  Devin was three years old, and had been diagnosed with bone cancer.  I am happy to report that, despite needing a leg amputation, Devin has survived.

I hope he is out there somewhere, living a fulfilling life, and that the universe is treating him with some extra kindness.





Click here to read other installments of Stephen's Story:
Stephen's Story, Part 1: A Flashback
Stephen's Story, Part 2: Wait, what?
Stephen's Story, Part 3: Chemo for Christmas
Stephen's Story, Part 4: There goes the hair

Stephen's Story, Part 6: A Happy Birthday
Stephen's Story, Part 7: Great Danes and paper cranes
Stephen's Story, Part 8: PromisesStephen's Story, Part 9: The Long Journey
Stephen's Story, Part 9: The Long Journey
Stephen's Story, Part 10: Requiem


To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!