Vampdaddy

The New Lair

2008-12-29T09:26:00.002-05:00

In Dracula, the aforementioned member of the undead decides to move to London -- and packs boxes of dirt from his home in Transylvania. Vampires can travel, but they can never really leave their first home behind.

With this in mind, I'm pleased to note that I'm on the move. While it's no Carfax Abby, it's a little roomier and gives me an overall glow of renewal that might be warranted in 2009.

So, pack your reading glasses, tissues and garlic and head over to my new lair.

www.vampdaddy.com

Postus Ephemerus

2008-12-13T09:18:00.007-05:00

Well, Facebook finally stopped carrying my blog feed since I haven't posted in 30 days, and VM called me on the carpet for falling off the blogging-map. Best get back on, I suppose.

The truth is I haven't felt like writing much of late. No particular reason for my ennui (10 points for using "ennui" in a sentence!), but the drive just can't seem to rise to the top of the work/home life/laundry pile. As life returns more "to normal", it seems that there's much to do! Then the holidays come and bring with them tidings of good cheer -- not to mention inches of snow, bitter cold and ice-covered roads.

So I add my seeming lack of commitment to regular online story-sharing to the Vampdaddy Woulda-Coulda-Shoulda List of 2008. In the meantime, my guilt is softened by the other reason behind my absence: Vampboy has exploded into the almost-4 year old with boundless energy (so much so that we actually wondered if his seizure medication was sending him off the hyper-active deep-end). As New England has been gripped with power outages over the past few weeks due to an ice storm, VB has monitored closely the status of the "wire guys", endlessly making predictions of when various buildings will get their lights back. It's like watching commentators during a sports half-time show -- or at least that's what I'm told, as "sports" and "half-time" aren't really part of my daily vocabulary. Our time together is filled with long, drawn-out answers to "how was school today" -- and the question posed back; "How was work today, Daddy?" It seems as though my energy is focused on continuing the momentum of the new normal where normal becomes the operative word.

A few weeks ago I attended the funeral of a 4 year-old cancer patient. H didn't have the same cancer as VB, but struggled just as long (longer, in fact) and just as hard, until finally her little body couldn't take any more. The service was an intense experience -- both embracing the joy and celebration that comes with childhood, and reaching into the unimaginable grief and anger at a child's life cut short. For VM and I, there was the added layer of staring into the possible future for ourselves. All in all, it was not an experience I'd recommend.

However, I was struck by something that H's mom said in her comments to those in attendance. As she talked about H's energy, spunk and tenacity, she noted the choice that lies before all of us who fight hardship -- be it cancer, care giving, loss. The choice to decide for ourselves how we will greet and manage each day. "We choose who we will be," she said.

I guess over the past month and a half I've tried to choose to embrace with gratitude the opportunity we've been given; one more day with our son, one more day to live in the world without fear or anxiety of what yesterday has caused or what tomorrow might bring. One more day to enjoy as if it was like any we experienced B.C.

I know it's safe to say that I haven't made this choice every day in the last year. Instead I've sometimes chosen to allow my anger and frustration get the best of me, or let my lack of sleep or lack of quiet "me time" turn me into a bear. While working through these states is all part of the recovery from our experience, it can be so easy to let it take over.

Woulda. Coulda. Shoulda.....

But no matter -- today is a new day. I'll probably continue to lay low on the blogosphere through the end of the year, as I try to take some things off of the aforementioned list (getting back into yoga, filing a year's worth of bills and receipts, finally getting around to the financial plan, re-organizing the CD collection). In the meantime, I wish you and yours a happy and healthy holiday season, from a dad who's getting happier and a son who remains healthy.

Happy Holidays,
VD.

VB with "Grandma B" and a ornament containing a picture taken while VB was in treatment. 2008

VB 5, C 0

2008-11-04T20:30:00.002-05:00

Once again the machines whirl, the heart stops, and the anxiety of everyday life (something about an election?) takes a back seat to questions of life or death.

Today the answer is LIFE, as VB flies through another MRI with a "Free of Disease" scan. This one marks a milestone of sorts, as VB is now over 2 years from diagnosis with no sign of recurrence. While in the end this particular form of cancer doesn't allow for taking solace in such benchmarks, it feels worth noting.

Of course, there is another major event happening today, and as I type the ending is unknown. Regardless of the outcome, I will sleep tonight and dream of a future that almost wasn't but now....is.

The 2008 Vampdaddy Halloween Post

2008-10-31T22:40:00.006-04:00

Ah...Darkness descends, the Conquerer Worm turns in his coccoon, and the Goths get extra Gothey -- it's Halloween! I share with you now the true face of horror -- this year with multi-media...

Puppies! BWAHAHAHAAA!

Yes, here's VB in all his homemade canine glory. VM certainly outdid herself on this one -- replete with dog bone collar and wagging tail, VB was the cutest among the local trick-or-treat set.

Puppies and Natalie Portman! BWAHAHAHAHA

Never has impending Armageddon been so cute.

See more Natalie Portman videos at Funny or Die

No Puppies -- but bad 80's Vampire Euro-Disco Music! BWAHAHAHAHA!

This group apparently also has songs about aliens and Yeti. Truly Frightening.

As with my past posts on All-Hallows Eve, I'll share with you an interesting trivia fact: The actor to have played Dracula more often than any other was Christopher Lee.

Bwahaha.

When Staying in Bed is the Better Solution

2008-10-20T22:05:00.004-04:00

Today I walked into a wall. It happened while I was escorting someone through my office lobby and into a conference room. Of course, this particular location has a 10-foot tall sculpture of the state hanging on it, which I assessed is made of metal after listening to it clunk against the wall, loud enough for everyone in the building to hear. Granted, this was better that what immediately went through my head: the proud monument to our community crashing onto the floor, maiming someone in the Communications Department.

The person I was meeting with was quite gracious as I peeled myself off the wall and suggested we start with some coffee, as I was clearly in need of a caffeine fix. Let's just say the subsequent coffee-clutch did not improve the rest of the day. While I avoided hitting other structures or further damaging the region, this was definitely a day that ends with a sense that the world would be better off if I stayed at a safe distance.

I'd type more, but I fear my propensity for run-on sentences would somehow set the fish tank on fire.

The Difference a Year Makes

2008-09-30T11:11:00.002-04:00

Before.

After.

Walk-a, Walk-a

2008-09-21T21:13:00.003-04:00

Yep, my feet hurt.

Yep, it was worth it.

Song to the Siren

2008-09-18T21:26:00.007-04:00

It starts innocently enough -- you raise your child to be friendly and outgoing -- to develop bonds to others, while remembering always that you in your role as parent are the best thing since sliced bread. You revel in every hug, every kiss, every "I love you Daddy", with the wild abandon of a cat diving into a pool of catnip.

Then, just when you think you've mastered the parent/child bond, she comes along.

She, with the long flowing hair and sultry voice.

She with the size zero waste, the purple clam-shell bra, and long, slender fins.

I speak, of course, of Ariel.

Yes, after indoctrinating Vampboy into movie-watching with this undersea harpie and her collection of exotically-gilled friends, VM and I have watched our son descend from an independent little guy into a hopelessly obsessed boy, pining for the aquatic love that dare not speak its name.

After viewing the movie three times, it was time to break out the soundtrack. After listening to that about 1,000 times ("Poor Unfortunate Souls", indeed) it was time to buy the tie-in book -- which VB would take to bed and look through until his tired eyes closed and his sleepy arms dropped the book onto his face. In our continuing negotiations about the goal of moving beyond pull-ups into "big boy underwear", the only way we've made any progress is to assure him that we will supply "Little Mermaid underwear" -- even though that means VM will be putting her artistic talents to drawing her on toddler boy tighty-whiteys.

We tried to let him watch "Finding Nemo", but it only reminded him of other characters under the sea he'd rather spend time with. He did sit through "Cars", but he only seems to care about Lighting McQueen being on his pull-ups. I guess you can't fight toddler love.

Somewhere Walt Disney is laughing in his cryogenic storage tank, counting off one more convert to be added to the growing drone army that will be unleashed when the alien invasion arrives. (Note: This reminds me -- I'll have to explain my "Disney conspiracy" another day.)

Stand Up to Cancer -- You Too, Kid!

2008-09-12T00:00:00.000-04:00

September is Childhood Cancer Awareness Month. This Saturday, September 13th, is Childhood Cancer Awareness Day. Of course, for me, every second of the last 2+ years has been Childhood Cancer Awareness Moment.

But it's not about me. In fact, it's about:

- 12,500: That's the number of children newly diagnosed with cancer every year in the US, according to Curesearch . That's 34 families a day that receive the worst news you could ever imagine (an I should know).

- 1 in 250: By 2010, that's the number of adults that will be survivors of a pediatric cancer.

-The leading cause of death in youth under the age of 15: Brain Tumors.

Of course, although these numbers are tragic and heartbreaking, they do not match the number of adults that receive a cancer diagnosis in a given year. For that reason, many of the major "cancer advocacy" groups often talk about childhood cancer as an after-thought.

Well, it shouldn't be. For kids who develop cancer, their survival often comes with a lifetime of future hardships and challenges that are unique. Childhood cancers impact patients and families in ways different than adult cancers. There are educational challenges that are yet to be fully understood -- there are health insurance challenges that will plague childhood cancer survivors for years (or until the United States gets it together and decides to treat access to affordable, quality health care as the right of every American and not a luxury). These are just two examples, but there are more.

So, here are a few things to think about, know and do in recognition of this month/day/moment. Let your heart be your guide....

1. VOTE. Let this serve as my one comment on the current election season. Don't vote for anyone who would not increase funding for cancer research -- and make sure they include pediatric cancers specifically. Do vote for anyone what would ensure that every child with a cancer diagnosis has access to the best treatment possible, at a cost that will not bankrupt the family -- or saddle a young child with a lifetime of debt they will inherit from their parents some day in the future.

2. GIVE. Whether it's your local Children's Hospital, Pediatric Cancer Clinic or Research and Advocacy Organization, they all need your help. Or, the next time your local news runs a "human interest story" about some family going through pediatric cancer, write down the fund address that usually pops up at the end and send them a check -- even $5 means a lot. Tell them Vampdaddy sent you.

3. Remember. Lately it has become quite "sexy" to talk about cancer. Between Lance Armstrong returning to cycling (ride on!) or this month's Stand Up to Cancer event, the disease has become a media darling. Make sure that the glitz of the next Cancer Cause that gets tossed at you includes some conversation about kids with cancer. If it doesn't, move on.

4. Eat at Chili's on September 29th. I am the last person to advocate for fast food -- and have not opted to use my blog as a venue to advertize. However, Chili's restaurants is donating all of the profits they make on that day to the St. Jude Research Hospital. As it's the only place around that not only provides treatment, but housing for families -- all FREE OF CHARGE -- they deserve some love. They are also treating patient's with VB's Cancer. My advice is to try the Blue Cheese Burger (with the Black Bean Burger substitute, for all you vegetarians out there).

5. By groceries at Stop and Shop. Of course, both #4 and #5 only apply if you live in an area where they exist -- but Stop and Shop grocery stores provide huge amounts of funding to the Jimmy Fund Clinic at Dana Farber in Boston -- specifically their Brain Tumor Clinic Program. It also helps that they actually have a decently affordable line of organic goods. Yummy.

6. Vote. Yes, it's so important that I said it twice.

Be back next week with something more amusing and less cancer-related...Promise...

Our Cancer

2008-08-17T21:19:00.003-04:00

Leroy Sievers is gone.

Those of us who have been reading his "My Cancer" blog over the past couple of years new this day was coming. Recently, it was clearly nearer than ever. Yet the shock of reading that he passed away suddenly this weekend still reverberates.

For those who live in "C World", Leroy's blog became more than just another person's account of their cancer journey. For many, it became a community -- where comments were left and exchanged that brought together many who were experiencing their own battle. Leroy was someone who clearly read people's comments, as he'd often be inspired for his daily post by something someone else commented on the day before. When a long-time reader lost her battle, he wrote the next day not about his own experience, but her -- and the impact she had clearly had on so many in the "My Cancer" community.

A few weeks ago Leroy appeared on NPR's "Talk of the Nation", and followed his appearance with a live podcast. I think I asked some stupid question regarding how Leroy had dealt with health insurance issues (I must have been knee deep in fighting over some bill or another that day), but the other questions were shockingly forward: Was Leroy prepared to die, how did he want to spend his final days, did he have a "Do Not Resusitate" order, etc. Leroy never flinched, never waivered in giving an answer as direct and honest as the original question.

There are plenty of times that I feel like I don't want to write about VB's cancer any longer. When something happens that becomes a part of who you are against your will, there are times you'd just like to put it aside and forget that it ever happened. In those moments, however, I've often thought about Leroy, and his decision to get up every day and write something, anything, that would bear witness to his experience and the experiences of so many that did not have the platform for expression that he did as a reporter. Leroy's expample inspired me to open up my computer and follow his lead.

We who live and fight and struggle against cancer have lost a great voice, one who dared to put out to the world the unfliching reality of this experience. May all of us who choose to tell our stories, in whatever way, continue to carry Leroy with us.

VB 4, C 0

2008-08-12T20:24:00.005-04:00

"Code Blue".

We all know what that means -- at least, those of us who have kept at least one medically-related show in our viewing repertoire since the dawn of television. When you're sitting in the lobby of Chez Healing, eating a bagel sandwich while your son sleeps two floors above you in an MRI machine, your mind goes places when you hear those words over the intercom.

Somewhere nearby a life is possibly ending. Did anyone see it coming? Is this how they expected it to turn out? What hopes and dreams are suddenly being placed into the "never mind" pile? Are the parents there, watching this unfold?

Will George Clooney or Noah Wyle show up in time to save them?

I'm going to hell, I think to myself as I move beyond my shallow curiosities and focus on the breakfast food before me. Of course, I understand that this belittling of what is most certainly a nightmare for someone is my own emotional defense, designed to keep myself from going down the road of envisioning, feeling, preparing...

But there is no need to fear the worst today. Once again VB returned from his MRI a little groggy from the anesthesia, but still "free of disease".

A day without our own Code Blue -- a good day indeed.

Thank you, Thank you

2008-08-05T21:51:00.005-04:00

1. Thank you to members of the "Stem Cell Cyclists" team, who as of last weekend had raised over $100,000 while participating in the Pan Mass Challenge with VB as their "pedal partner"! Since last year's ride took place while he was in the hospital, it was a great treat to be able to hang out at one of the water stops this year and cheer the team on!

2. Thanks to everyone at my "old job" for the send-off. I miss you all already.

Yes, I have an "old job" because....

3. Thanks to everyone at my "new job" for making me feel welcome! I know I've yet to speak of it here, but I was offered a great chance to expand my horizons and take on an ambitious project covering the whole "vamp state". There's a lot to learn, but I'm a week and a half in an loving every minute of it!

4. Sadly, NO thanks to the seizure gnomes that took it upon themselves to once again dance around in VB's head -- not once, but twice in the last week. It appears that our little man is growing up fast, and while his weight has not gone up, his little "I think I can" metabolism decided to ramp-up a bit and drop the effectiveness of his medication dose. So we've upped it yet again, and hope that the gnomes go back into hibernation...Forever.

5. Thanks to Chez Healing and VB's treatment team -- who are willing to address our concerns regarding the "other" potential reason for #4. They've moved up VB's next MRI date to this coming Tuesday, August 12th (it was supposed to be later in the month). So we only have to wait a week to put to bed any fears that the gnomes are the least of our worries.

6. Lastly, thanks to everyone who has donated so far to my Jimmy Fund Walk effort (see the link on the left of the page if you'd like more info on this shameless plug). Truth be told I've yet to pound the pavement in preparation -- as the new job/gnome battle has kept me quite busy. However, mentally I'm already walking, and isn't half the battle psyching oneself up? I guess we'll find out after they carry my over the finish line in September.

I Will See You In Far Off Places

2008-07-22T22:09:00.005-04:00

There we were, enjoying the naive innocence of "tub time", when VB mentioned that he'd like to go to the hospital to visit Baby M. This it where it begins -- the time when questions are asked no child should need to have answered.

You see, "Baby M" is the young co-cancer-fighter who died back in the fall.

VM calls me upstairs to explain who VB has said he will visit. We look at one another with sad eyes. Of course, we knew this day would come. I suppose that every parent has to deal with the "death" issue at some point, but if you're lucky it involves the death of a turtle, sock puppet, or something else benign. Not another human being -- and certainly not someone who died of the same thing that could still spell the end for the inquisitive child as well.

I respond that Baby M is not at the hospital any more. VB disagrees, clearly looking for something more satisfying in a response. VM starts to explain. "VB, do you remember when you were sick? Well, Baby M was very sick -- very, very sick."

"Yeah," VB replied, with his shoulders shrugged and his hands raised in an "I don't know why" position. "She's sick. She needs medicine real fast."

"Well," VM said tentatively, "the medicine didn't work. She was too sick."

"So she's gone," I tack on.

VB thinks for a moment. "Yeah, she moved to a new house."

"Well....Sort of." VM shoots me a look as I give this reply. Technically it was a fair answer -- depending on your view of the afterlife. "He's only 3" I whisper quickly, "there isn't much of this he's going to understand."

Many years ago I used to run summer leadership camps for high school students. As camps go it was a rather emotionally intensive affair, complete with intense bonding and "warm fuzzy" sharing amongst participants. Towards the end of the program, when we were working with the youth to help them prepare to say goodbye to the experience and head home, myself or a camp counselor would read The Fall of Freddie the Leaf. We'd of course lighten the discussion of death that is at the core of the story, and instead use it as a metaphor for endings in general.

Never in a million years would I ever have conceived I'd find myself running around my house one day, searching for my copy, so I could help my son understand why his little friend is gone; that the same thing that took her away almost took him as well...And still might some day.

Yet, there I was.

However, by the time I found it, I returned to VB's bedroom to find him curled up in bed with a far better book. With a mix of relief, and the nagging existential angst that keeps me drinking way too much coffee, I put death aside for another day...And hopefully many, many more.

While Waiting for the Real Fireworks to Start

2008-07-05T09:01:00.006-04:00

VB seems back on track, so we made the obligatory trip to the fireworks display in the next town over -- which is the town I grew up in.

VD: You see that building right there, son? That's where your daddy went to high school.

VB: Oh.

VD: Actually, not that part of the building. That wing didn't exist at the time. I went to that part.

VB: Oh. I go to school.

VD: (thinking) Hmmmm...That sculpture wasn't there either. And it seems they aren't letting people on the football field. That's odd -- that's where we used to sit. I guess we'll sit here, at the same spot we started our short-lived Croquet club; complete with finger sandwiches and rousing versions of "que sera, sera". How very Heathers it all was.

That was so long ago...Damn, I'm getting old!

We are Fireworks

2008-07-03T22:30:00.003-04:00

It would be easier if VB's seizure's were the more typical variety that people expect when they hear the word -- some wild arm flailing or flopping about that's clearly visible from a mile away.

If only...Instead, the electrical haywire happens subtly -- slow cognitive leak versus a volcano erupting. The active boy goes quiet, his response to your questions takes longer. He seems "out of it" -- even more than the average 3 year old. Yet, to move to a place where you realize something might not be quite right, moments pass -- and the fog roles in.

Then comes the synaptic firing of the parents, each 5-10 minutes away with their "work caps" on. The phone rings, the voice says "come now", and the parent brain begins to shout.

Shut off the computer pack the bag tell the staff maybe you'll be back maybe not get the car will I be back probably not thank God I have sick time to use I can pick up where I left off on Monday I KNEW he looked off this morning why didn't we keep him home today isn't this appropriate that he has his first seizure since February the first week his mother returns to work he's gained weight so of course his medication dosage is no longer enough WHY IS THIS PERSON SITTING AT A GREEN LIGHT GET OUT OF MY WAY I wonder if I can speed perhaps that cop will just follow me to the school and take pity as I rush in well maybe not I'll slow down I CAN'T HEAR YOU HONEY THE PHONE IS BREAKING UP WHY DON'T I JUST GET THERE I hope this doesn't require a trip to the hospital this had better be just a breakthrough seizure and not a sign of relapse relapse relapse the BIG R that we won't think about because I don't have the energy there's the turn almost there where can I park with the dogs in the car it's a billion degrees out F@##% it I'll just leave the car running with the air conditioner on we live in a decent town my car should be fine now how do I get to the room he's in I know the sign says "please do not go down this hall follow detour" but it's quicker so screw it no one is watching anyway I'll just keep running run run run run run I'M HERE I'M HERE IT'S OKAY I'M HERE......

The explosions stop. The fog clears. Suddenly the boy snaps to normal, while VM takes a call from the doctor for an update and the teachers fill me in on the proceedings of the morning. We head home for an unplanned afternoon. VB takes a two and a half hour nap while I lay at his side, feeling his warmth and begging the universe to stop kidding around.

The North Atlantic Sand

2008-06-25T22:25:00.007-04:00

The beach cottage is 600 square feet, but its design seems to keep that a secret. Tall ceilings with quiet fans that spin lazily in the warm summer air give you a feeling of vast, open space. With central air, elegant paint and furnishings representative of a Pottery Barn summer catalogue spread, this is far from the "family summer cabin" days I spent as a kid. Back then, the summer cottage was a log cabin in Minnesota with no running water and sleeping quarters in a tiny attic space. But now, thanks to the generosity of friends, the idea takes on a whole new (and far more luxurious) meaning.

The weather is perfect -- warm but not stifling. The rain and thunder rolls in surprisingly on our schedule, giving us the ability to be outdoors as we wish, and making the perfect moment arrive for VB's fist film experience -- complete with a darkened living room and "The Little Mermaid" on DVD. Vast amounts of popcorn is consumed as the rain does what it needs to outside, leaving just in time for our next outdoor adventure.

What adventures the outdoors bring -- a zoo alive with baby bears and kangaroos that give VB plenty to talk about. Mini-golf that gives VB a taste of his grandfather's favorite past time.

And the beach -- gone is the vision of the crowded, muggy, sun-screen smelling environment I despise. Instead the vast ocean greets us with minimal company but the seagulls and waves. Decked out in sun-proof swimwear and with our sun-proof tent for shadowy afternoon naps, I am free to listen to the waves and stand on the rocks staring at the horizon, which shows itself in my favorite shade of blue. VM frolics in the ocean, while VB smiles and digs and laughs and plays.

The moments are perfect, like a string of rare jewels.

Now I know what vacation feels like.

2 AD

2008-06-15T22:30:00.011-04:00

BC = Before Cancer

AD= After Diagnosis

Here we are -- two years later. Granted, the anniversary if VB's first seizure that began our cancer journey is the 18th -- but when a life-altering event takes place on a holiday, it's easy to assign value to the day, not the date.

Recently, things have happened that are too good to be true. First -- and most important -- Vampmommy got a job! As some of you many know, her gainful employment was one of the sacrifices we accepted to be able to engage in the needed battle. However, with the battle behind us, VM overcame the current state of the economy and landed what should be considered the perfect gig -- that of a Patient Navigator for our local branch of the American Cancer Society. Who better to help cancer patients and families navigate the system then someone who did it as well as she did?

The second moment of wonder came this morning. The day VB had his seizure, the plan for the morning was originally for myself, my dad and my brother to have breakfast at a local Irish Pub. It didn't happen obviously -- and Father's Day last year was spent largely in the hospital. But today, with the Pogues playing in the background, we gathered at the very spot we had intended to two years ago, and had the breakfast I had been waiting for.

There is more -- on the actual date-anniversary of VB's diagnosis, we will be frolicking on the beach in our first vacation as a family ever. There are also other things "afoot" that can't be spoken of yet, but promise to push us closer to a stability that has seemed foreign to us.

All of this is leading to something I'm no longer used to thinking about -- the future. Do we dare dream again? Do we finally take our eyes off what's right in front of us, and look instead to the horizon?

Here's to leaving behind, looking ahead, and dreaming once again. Happy Father's Day to my fellow Daddy-Bloggers!

Hairdresser on Fire

2008-06-03T21:04:00.002-04:00

Vampboy's first haircut. Ever.

Amazing.

(Thanks to Vampmommy for the video....And Brenda for the cut!)

Extractions, Part 2

2008-05-23T20:08:00.006-04:00

The "port" is as much a part of the cancer experience as breathing is to the whole "being alive" thing. Ports are the devices that provide easy access to the blood stream for both the intake of medications and chemotherapy, as well as to get blood samples for the daily grind of "platelet counts" and other medical tests I am more than happy to forget about these days.

As they are implanted in the chest with direct access to the heart, it is easy to develop a sense of security with your port -- or, in my case, my son's. While ports can stay in for years, even decades in adults, in young children they tend to become infected or no longer fit the growing body. So, for most kids who complete treatment, the last step is having their port removed.

This is what Vampboy did this week. After a brief visit to the OR, he was eating his usual post-anesthesia feast of graham crackers, while I considered the deeper meaning.

That's it...We're DONE.

VB now gets to join the ranks of his toddler counterparts who wail and thrash as they get needle sticks in the arm for shots and the like. We have begun explaining to him, in a loving way, that the days of emla-induced pain-free pokes are over, but at the moment he just responds "oh, they'll put a port in my arm." Sure, honey...If that makes you feel okay about it.

This momentous occasion also does marvels to re-constitute fear and panic in VM and I. As our lives have been filled historically with "other shoes dropping", it is easy to think that the "Evil C" is just waiting for us to remove his port before it starts tap dancing in his little brain again. Of course, new ports are just as easy to put in as this one was to take out, but that doesn't sway your mind from the paranoia similar to that which drives pro-sports enthusiasts to wear the same pair of undies every time their team has a home game -- without washing them in between.

Maybe we should have left the port in to be safe....

Maybe I should pull out my lucky bowling shirt from high school and wear it for the next 10 years...

My mind wanders through these thoughts and concerns as we make our way out of Chez Healing that afternoon, stopping in the lobby to buy a Mickey Mouse balloon and a fake fish tank that lights up for our little trooper patient. While VM makes the purchase, VB runs over to the giant glass case in the middle of the entrance, holding within it a complex roller-coaster that wooden balls travel through. In between the rhythmic clanging and dinging as the balls hit against bells and metal plates, VB wraps his arms around my leg and leans in for a hug. Instinctively I lower my left hand, and realize to my astonishment that he's grown tall enough that I can rest my hand on his shoulder without having to bend down. Amazing.

There will always be worry -- but not this moment. This is a space and time where cancer no longer lives.

In this moment, we win.

Sleep/Walker

2008-05-16T16:37:00.011-04:00

Way back before my blog entries covered fun issues like cancer, death and heartache, I had mused about the ongoing battle with Vampboy to get him to sleep through the night, in his own bed. This week, we reached a profound milestone in that quest when -- for the first time in almost two years -- VB went to sleep in his very own room. It's a work in progress, with the padding of little feet making their way back to us in the middle of the night, but so far we've had one full night of successful "sleeping like a big boy".

I thought, when it came, that this joyous turn of events would leave me sound asleep, sprawled out across the vast ample space of a childless bed. However, much to my surprise, the week has left me completely tired, having not slept through a single night. I think the reasons are two-fold. First, I'm so excited about not having to curl up in a corner and protect my face, stomach and "lower area" from midnight kicks, that I don't know what to do with myself.

The second reason is more of a surprise to me -- I actually miss him. In the haze of our attempts to sleep last night, Vampmommy said the same thing. For over a year and a half we've slept in our protective cocoon, always having the warmth of him right next to us. The reasons were totally practical -- given all of the tubes, IV's and overnight fevers and vomiting that came with treatment, there was no safe way to have him anywhere else. Of course, there was also the unspoken need to know at a moment's notice that our son was still alive and fighting. While on many mornings I may have awoken bleary-eyed from interrupted sleep, or bruised from a foot in the stomach, I grew to value the comfort that came from being within arms reach at all times.

As I make the transition to having our sleeping quarters released from the jaws of cancer, I have also lain awake this week thinking that this adjustment could have been very different. Not to long ago we were faced with him not only leaving our bed, but our lives entirely. Feeling that open space next to me at night has connected me to those fears again -- and to the relief that this transition only puts him down the hall.

We will never share the ignorant luxury of most parents -- that our child will have a life free of disease and pain -- but as we continue to celebrate the simple gifts of normal life that come our way, VM and I have decided that now is the time to do a little giving back of our own. To this end, we've decided to put on sneakers (which, for a person who has word nothing but Dr. Martens for the last 18 years, is something major) and participate in the Boston Marathon Jimmy Fund Walk.

There are so many people -- many of you -- that I credit for keeping us going through the ordeal that is still a part of our every day life. But VB is alive, laughing and running and dressing up like David Bowie, because of the treatment he received at Dana Farber Cancer Institute's Jimmy Fund Clinic. While at times it seems like there will be no way I can repay anyone for the grace and gifts that were given, participating in this "little" stroll through the marathon route seems like a place to start.

Should you feel so inclined as to support me in my quest to walk farther than one should normally, you can visit my page here and make a donation, or click the new link I've added on the right of this page. We've set up a small team of wacky-walkers, so through my page you can also visit the team page and make a donation that will be split among all of the members. Each member of the team is asked to raise a minimum of $250 -- of course my goal is higher! Raise more than $1,000 and you get a special shirt. Raise more than $5,000, and I think you get carried on the route in a litter held aloft by Madonna's hunky backup dancers, while toddlers dressed a cherubs sprinkle rose pedals along the sidewalk.

Regardless, every little bit counts. The money raised ensures that VB and others diagnosed with AT/RT or other pediatric cancers will continue to have access to the best support the world has to offer.

Now, I'm off to begin accumulating kick-free sleep. Looks like I'll need it!

VB 3, C 0

2008-05-09T17:32:00.002-04:00

Another clear, cancer-free day! Excuse me while I go enjoy it.

Vampdaddy in the City

2008-05-06T22:06:00.008-04:00

A few weeks ago, Vampmommy decided to force me into a hiatus from reality in order to reduce my stress and give me a bit of a break. This past weekend I followed her orders, packed my trunk and made my way to the "Big Apple" for a few days of tomfoolery with my good friend "The Manny". There was good food (in particular a reunion with friends over the largest pork chop I have ever seen) and some damn good art. The photo above was taken of me at the Colors Exhibit at MoMA, after I briefly shared an escalator with Martina Navratilova. She seemed lost -- but aren't we all when confronted with gigantic paint swatches and Andy Warhol?

Not to be overwhelmed by the grandeur of high-class entertainment, the Manny helped me "keep it real" with some particularly stunning screenings of television and film greatness. I laughed, I cried, and I learned -- namely, that John Travolta and Lily Tomlin are a creepy couple, Captain and Tennille's Variety Show holds a spot in my subconscious memories of youth (I actually remembered a skit from the show when we watched it), and Pia Zadora is far, far from lonely.

Oh, and according to the Wii Fitness Challenge, I have the athletic prowess of a 67 year old. I didn't realize the close connection between declining health and my ability to suck at Wii Baseball, but there you go.

All in all it was a great time away, made only better by the exciting moment of having Vampboy run up to me at the bus station with a smile that could outshine a nuclear blast. Borrowing the tradition from my dad, who always brought home a small gift when returning from a business trip, I was sure to return with prize in hand -- a shirt from the Natural History Museum which he wore proudly to school the next day.

Of course, the timing for the getaway couldn't have been better. This week is a big one for us, as Friday brings the next MRI. As I know many of you will spend some time Friday morning sending some energy our way, I ask that you take a moment now and send some love to Princess. Our dear friend and co-treatment warrior had an MRI today that shows what is most likely a relapse, having finished treatment with a "radio-static surgical procedure" two months ago. There is more testing in the coming days to confirm the diagnosis before "Attack Plan B" goes into effect, but our hearts sank with the news that her journey through treatment may not be over.

For those keeping score, out of the four children (including Vampboy) who were in treatment around the same time (not including our new friend "5", who is at the beginning of her treatment) -- one has died, and two have relapsed and continue to fight.

And Vampboy? I'll let you know Friday night....

-4, +5

2008-04-21T21:38:00.004-04:00

A beautiful day for a marathon! Of course, before you think I did any of the running, think again -- I'm lucky if I can run to the mailbox. But lots of other people did -- including Arnie, who ran to raise money for Children's Hospital with Vampboy as his patient partner. He certainly made it look easy, and Vampboy enjoyed screaming "Run, Arnie, Run!" to everyone who passed by.

The other runner we watched out for and cheered on was Othergirl's mom -- and it dawns on me that I hadn't updated my readers with how she's doing after her relapse. I am happy to share that, after a grueling round of outrageously intense chemotherapy and a stem cell transplant, Othergirl is home and cancer-free. Also doing well is Princess, who is awaiting the results of a radiostatic surgery to hopefully confirm "free of disease" status.

That leaves "4" - the young girl we met towards the end of our treatment time. We sadly discovered this weekend that she passed away a little over a week ago. Her situation was far more challenging at the start than the rest of us, but it doesn't make the news any easier to hear. Our hearts and minds are with her parents and family these days.

In other news, to quote Yoda who said "there is another", we met "5" this past weekend. We heard about them a couple of weeks ago through Eliza, and while we were in Boston for a pre-marathon party we decided to stop by the hospital and introduce ourselves. The new patient is 15 months old (Vampboy's age when he was diagnosed). Her parents are friendly and outgoing and, like any other family on the planet, they don't deserve this. But, they are ready to fight and glad to know they can lean on someone who's been there.

It's like the first day you called in sick to elementary school, and were shocked to learn that the day went on without you. Now that we're not in treatment, it feels as though that should be the end of anyone having to go through it. Sadly, life doesn't work like that -- and neither does cancer.

Notes from the Observation Deck

2008-04-16T20:00:00.002-04:00

Here, for your pleasure, is a smattering of the thoughts in my head these days. And note they all exist free of any substance use!

1. Robert Smith is dating my Ipod. As my days at work of late have been spent hunkered down at the computer writing the perfect grant, I've enjoyed ample time with my Ipod on "shuffle" mode. After awhile you can't help but notice some eerie and potentially conspiracy-laden patterns. For instance, why the hell does my Ipod randomly play more songs by The Cure than anybody else? I know there's a lot of Cure on there, but I've got more Tori Amos or Bjork, and I don't hear them very often -- or the other artists who make up the 8,000+ songs on there at the moment. Perhaps Steve Jobs has a special deal with Smith. I'll have to look into it in my spare time. Oh, look -- it's "Lovesong" again!

2. I Give Good Facebook. Yes, I took the plunge and put myself on Facebook. Admittedly I've reconnected with some folks from my college days, including my roommate for the latter half of my undergraduate experience, who is taking the 'net by storm in her role as a sword-wielding Elf in the Zelda Trailer. But I think I still prefer socializing with friends in person. (That said, though -- if you're on there, find me!)

3. Registration Begins at 10am. My dear friend Mumma Boo tagged me for thoughts on the course selections I wished schools made available. As I am embarking on a new role as an "adjunct professor" and a local college this fall, my thoughts are on this very issue. I wonder what the Dean of the department I'll be teaching in would say if I suggested that we scrap my course and go with one of these:

Self-Reflective Rhetorical Theory. This course will examine the answer to why bad things always happen to you. Students will examine their own shortcomings and misery to arrive at their thesis. Course grades will be determined based on final "pity-party" presentation.

M.O. Theory and Practice. Alphabetical by artist -- chronological by release date -- this course will examine prevailing concepts behind Music Organization Theory. Evidence-based practice in storage of vinyl, tape or compact disc collections to be highlighted. This course is a prerequisite course for M.O. Theory and Practice II: Zune Sucks.

The Ant in Cinema. Course will look at the ant as a cinematic archetype. Various horror movies in addition to recent computer-animated children's films will be screened. Students will be asked to synthesize cultural contexts and modern themes to better understand the insect race that will one day dominate the planet.

Playing the Role. Most people have no idea what they're talking about. This course will provide students the opportunity to learn methods of illusion with an eye towards career advancement. Famous idiots in positions of wealth and power will be examined.

The Complete Baking Soda Inventory. Is there any problem that can't be solved with Baking Soda? This course will provide students with an opportunity to delve into the many understandings and uses of the "white stuff". Final project to consist of students' achieving world peace, setting up a post-apocalyptic society, or curing Ebola with nothing more than a half-pound box of Arm & Hammer.

4. Wacky Wednesday! In an attempt at "preschool spirit week", VB's classroom had a "wear wacky clothes day" today. VB opted to pay homage to the glam rockers of the late 70's with his ensemble. David Bowie would be proud.

"He was a young American...."

5. Blogiversary. I've been so busy observing the world that I didn't even notice that the Vampdaddy blog has turned two! Who would have thought (and I mean that on so many levels). Thanks for sticking around!

A True Sign We're in a Recession

2008-04-06T21:41:00.003-04:00

Today we were in the car after visiting my father, who is recovering from a collapsed lung at the local hospital. Serious, yes -- but all seems to be on the mend, and as we pointed out the day he was admitted -- "Hey, it's not a brain tumor."

Anyway, as we were leaving the hospital for the evening, Vampboy asked is we could go out to "lunch" before going home.

"No, son," I reply. "First off, it's time for dinner and not lunch. But anyway, we can't go out to eat, as mommy and I are poor."

Vampboy thinks for a minute. "Daddy -- don't you have your wallet?"

At this point, Vampmommy is trying to hide her laughter. I answer straight away. "I do, but there's no money in it. Sorry."

"Oh." Another pause, then: "Mommy, do you have YOUR wallet?"

VM contains her laughter and responds as I did. Vampboy thinks long and hard.

"I don't HAVE a wallet. I should go buy one with Mommy."

Yes, if only he had a wallet. That would solve everything!

Extractions, Part 1

2008-03-25T22:15:00.003-04:00

Take a good look at freedom, folks -- this is the MIC-KEY button that we removed from VB this past weekend.

For the first time since late 2006, I can hug my son and not feel a tube or other object poking out of his abdomen. I can't quite explain how good that feels.

Vamp O'Daddy 2008

2008-03-17T18:38:00.006-04:00

Happy St. Patty's day to one and all! Sorry it's been quiet around these parts, but things have been -- well, they have been.

VB continues to do well, and has adjusted nicely to attending 2 different "schools" -- one his normal daycare, and the other the special education program at our local school district. What we felt was a gargantuan transition, full of unknown and anxiety, has of course proven to be the highlight of his week -- because he gets to take a bus between the programs. While the idea originally filled us with dread, Vampmommy's keen ability to stalk the bus gave us the assurance we needed to know he'd be safe and taken care of -- particularly when the bus driver reported being followed by someone with a camera to the school.

Meanwhile, VM continues her quest for a new job. There have been a couple of leads and a promising interview, but for now we wait with fingers crossed -- while anxious Sundays pass without a whole slew of new opportunities appearing in the paper. All I can say is, thank goodness for family -- and being able to deduct medical expenses from one's taxes. These have kept a roof over our heads for the moment.

I, however, have a job -- and I think it is taking me to the brink of insanity. Finding your "life's calling" is a gift, and I count myself lucky that I am not in some mind-numbing quest to line the pockets of "the man". However, the trade-off is that my work requires insane hours, with long periods of begging people for money to continue doing the work -- periods where I could actually be doing "said work" if I wasn't having to strategize about the next grant or fundraising scheme. Thankfully I have a great staff and colleagues that keep the fire's roaring, but still...

I have had some respite from the madness in the form of The Manny, who came to stay for a few days in what turned out to be a fest of music-listening, Candlepin Bowling and a tour of the region's finest Asian cuisine. However, while I think I can go a few months without anything containing MSG or duck sauce, a few hours back at work left me already longing for more time away.

When I was in graduate school, my thesis professor would live at a monastery for two weeks out of the year so she could reflect, read her students final products and do her own writing. While monastic life doesn't immediately attract me, the idea of the quiet and solitude does. I think that was what I was hoping for during my December, before VB's seizure's got in the way. Given the level of chaos we've been through in the past year and a half, and the normal state of chaos that comes with life, an afternoon of eating teriyaki beef sticks while listening to A Taste of Honey just isn't doing the trick -- no matter how enchanting.

3

2008-02-24T00:09:00.002-05:00

Happy Birthday, VB -- Daddy loves you.

"Happy Birthday" by The Innocence Mission

VB 2, C 0

2008-02-15T22:36:00.001-05:00

Today's MRI was an "all clear" - this marks 6 months of post-treatment cancer free-ness. Party on, VB!

Vamppuppy

2008-02-11T18:32:00.002-05:00

Joining the world of pediatric cancer means many things -- most of them horribly negative. Thankfully, there are those who believe that kids who've been handed the raw-est of deals get to cut to first place in the "dream line". This is the case for VB, who had an opportunity through Make-A-Wish to ask for his heart's desire. When VM and I first decided to take advantage of the perk now (rather than wait for an unknown future) we weren't exactly sure what he would ask for. As VB doesn't watch TV, the typical answer of "A trip to Disney" wasn't in the cards. But we never would have guessed what his response would be on that fateful morning when we decided to ask:

VAMPMOMMY: "VB, if you could have anything in the world, anything at all, what would it be?"

VAMPBOY: (immediately and without pause) "A puppy."

VAMPMOMMY: "Uh, but son, you already have a puppy." (VD gestures lovingly to elder statemen Vampdoggy, who is presently licking his nether regions in a corner).

VAMPBOY: (with fingers in a "V" shape for emphasis) "No, mommy -- I want TWO puppies."

With that, the Wish team set out to make it so. VM and I did at least have the ability to choose the breed, so we went with a Portuguese Water Dog (PWD for those of you hooked to the grandest of games that gets underwey tonight!). We went for the wavy coated version -- well behaved, but not poodle-like.

Weeks ensued for the grand search. One breeder's pups were bread to be hunting dogs and a little more energetic than we'd like; another would only give her dogs to homes that fed their pooch a very specific, all-natural diet (it might have event involved the fresh slaying of chickens, I'm not sure). Finally, we stumbled on a breeder who seemed to have the right dog, but they had already decided to keep him themselves.

Then they called back.

Turns out that our little friend was growing into a bit of a third wheel -- not really bonding with either his mother, or the brother the breeders had also decided to keep. Knowing that they wanted their little four-legged friend to be happy and accepted into a loving home, they called the Wish Team and opened their home and heart to us.

Vampuppy is a perfect fit in any number of odd, cosmic weighs. He was stuck in the birth canal during delivery (so was VB) so he came out not breathing and had to be recusitated. While he was the biggest at birth, he has turned into the smalled of the litter, but despite his shortcomings flops around without a care in the world. His attitude and personality are so much like VB it's eerie, and the two of them have already become fast friends -- with Vamppuppy following VB around in scheer fascination, while VB instructs him in a high-pitched voice about the layout of the house and how not to chew his toys.

VP was brought home yesterday in the style, with a limo supplied by Make-A-Wish. VB is still talking ahout the "big car". There was a dinner party complete with puppy toys and puppy-themed party favores, and when it was all said and done the entire family crashed for a good nights sleep.

I'm sure the magic will wear off somewhat ("what -- what do you mean puppies have to go out to pee in the middle of the night!"), but our newest addition couldn't have been more well timed or more perfect. VB's wish wasn't the only one granted, and at a times like we live in those moments are perfection.

One last thing -- while I'm not one to use "real world" names on my blog, I do want to tell you Vamppuppy's name (that we chose): Noden . Check out why and I think you'll understand.

8 of 8

2008-02-06T08:57:00.001-05:00

Well, we've reached the end of the 8's. Let's pass the pain along.

8 People who should do this meme and not complain:

1. Fez . Now, most of you won't be able to enjoy her take on this, as my dear friend keeps her blog closed to the general public to allow her free reign to comment on things as a public figure of sorts. But it will at least entertain myself and those of us in the "coven".

2. Michael James. You haven't blogged since November. Time to get back in the game!

3. Meg. Trust me, hon -- this is a great way to inspire the new blogger!

4. Steve. He's probably one of the many I'll offer this to who has done it before, but it's worth a try!

5. Denver Dad. See number 4.

6. Francesca. Because she inspires me.

7. Lawyer Mama. See number 4.

8. The Manny. Okay, he doesn't have a blog -- but he should. It would be HOT.

7 of 8

2008-01-31T22:10:00.000-05:00

First off -- Vampboy's MRI this week has been postponed until the 15th -- as the hospital lost our scheduling paperwork. They probably lost it 3 months ago, but thankfully we found out before depriving VB of food for 8 hours and driving to the city well before sunrise tomorrow. The fun never stops, does it?

Speaking of which.....

8 Songs I could listen to over and over again.

Rather than explain my nuanced admiration for these little numbers, I'll challenge you to go listen and judge for yourself. Enjoy.

1. Wolf in the Breast by Cocteau Twins

2. Beethoven's 9th Symphony

3. Pity by the Creatures

4. Downside Up by Peter Gabriel

5. Mercy of the Fallen by Dar Williams

6. Lovecats by The Cure

7. It's not Up to You by Bjork

8. Vanilla by Cybill Shepherd

Just seeing if you were paying attention on that last one....

Enjoy the weekend -- and the real super bowl!

6 of 8

2008-01-28T22:10:00.000-05:00

I'm on a roll!

8 books you really should read.

1. Lamb: The Gospel According to Biff, Christ's Childhood Pal by Christopher Moore. A story of two teen boys finding their way in the world -- one being Biff, and one being none other than Jesus H. Christ (and yes -- the "H" is actually the first letter of his middle name). The chapter about their first meeting is priceless, with a middle-school aged Biff running into a boy in the market who keeps bringing a frog back to life after his brother whacks it over the head with a rock.

2. The House of Leaves by Mark Z. Danielewski. A drug addict stumbles into his dead neighbor's apartment, where he finds the manuscript of a non-fiction book detailing the case of a family that moved into a house that was bigger on the inside than it is on the outside. If you can make sense of the first few chapters, I promise the book will give you nightmares.

3. The Raw Shark Texts by Steven Hall. A man wakes up without any memory of who he is. That's what happens when you're eaten by a "thought shark".

4. Into Thin Air by John Krackauer. The true story of a team of Mount Everest climbers who meet their fate in a fit of ego-driven lunacy. Like a Greek tragedy, you know how it's going to end -- but you still find yourself yelling "turn back, morons!"

5. Jonathan Strange and Mr. Norrell by Susanna Clarke. It's Harry Potter for adults -- a lush tale of two competing magicians in Victorian England, where magic is commonly accepted but not commonly practiced.

6. The Historian by Elizabeth Kostova. Vampire....Brutal murderer....Bibliophile? Brilliantly told and written, this tale of Dracula through the ages is sure to keep you gripped to the end -- and you'll no doubt look over your shoulder a few times when out in public after reading it.

7. Pack of Two by Caroline Knapp. Any dog lover would appreciate this memoir about a woman and her dog. Caroline Knapp died of cancer several years ago, but this stands as a great testament to a life well lived with a canine companion.

8. I Like it When by Mary Murphy. Vampboy is a bit young for 1-7, but this is one of his present favorites for me to read him at bed time. Every time I read it, I'm reminded that it's great to be a dad.

5 of 8

2008-01-27T21:18:00.000-05:00

Wow...This whole "8" thing is taking FOREVER. Hopefully I can pick up the pace!

8 Things you* don't know about me.

(*= Blog-only relations. Some friends and family readers may know some of this...Shows how little I can really hide!)

1. When I was two years old I was playing in a wheelbarrow when it flipped over on top of me. There's a half-moon scar on my left hand in remembrance of the event.

2. I can't stand Andie MacDowell. I have no idea why -- she's never done anything to me, but watching her act makes me want to hurt people. It's a shame, really, because other than her presence I thought 4 Weddings and a Funeral was a good film.

3. I've never been to L.A.

4. I hate spiders. Actually, it's a combination of hate and fear, but nevertheless when they come around, it's my wife's problem.

5. In an effort to show my complex layers -- even though #4 is true, one of my favorite stories as a child was "Be Nice to Spiders". In fact, I loved it so much that I memorized it -- and my mom would pimp me out to the neighborhood kids who would pay a quarter to watch in amazement as I recited the whole story.

6. As a theatre performer, I have played:
*The Lindbergh Baby
*An insane teenager in a French mental institution
*A rape victim in a performance art piece
*Socrates
*A rock
*Tom Sawyer
*A Flagellant (someone who believes that salvation can only be found through self-mutilation)
*Charlie (you know, the one who got the Chocolate Factory)

7. I think I can sing. Whether others agree is up for interpretation.

8. There are more than 8 things you don't know about me.

4 of 8

2008-01-20T18:27:00.000-05:00

Half-way there....

8 Updates on Vampboy

1. The seizures seem to be under control, as he hasn't had one in over a week. He's also sleeping better, so we're hoping that the increase in his medication dosage has done the trick. There's lots of wiggle room (he's not even getting half the allowable dosage), but a little seems to go a long, long way.

2. This past week he had an LP (Lumbar Puncture). The purpose was to "close the book" on the seizure-related drama we had in December when we thought it might be a cancer relapse. The LP came back negative, so we're still in the cancer-clear. However, his next MRI is February 1st, so we'll panic again in about two weeks.

3. HE HAS HAIR!

4. Last night he enjoyed a dinner party with some friends from school -- followed by a sleep-over! I know I speak for many when I note that VB is a favorite amongst ladies in the 2-3 year range (and beyond). While it was amusing to hear him running about excitedly talking about how he and he friend J were "going to go to bed together", they did end up sleeping in separate rooms. My script for "the talk" just isn't ready yet.

5. One of the most profound therapeutic interventions we received towards the end of VB's treatment wasn't chemo or an anti-biotic -- it was a sticker chart. During our final stay in the hospital one of the "child life specialists" popped by at the opportune moment to see something people outside of my wife and I rarely witness: the Vampboy Meltdown. This is most often caused by the trauma of changing a diaper or getting dressed -- a toddler's version of water boarding, I suppose. The specialist asked if we had tried a sticker chart to reward him for compliance, and quickly whipped up a grid on blue construction paper. I am happy to report that, after a month of use, Vampboy this weekend got to pick out a new train at the local toy store for filling his sticker chart to the brim. Today he excitedly made a new one, and the process begins again. Believe me, spending $20 on a new Thomas train is worth it if it means not getting kicked in the mouth again by a screaming child.

6. We have begun the road towards "independence from foreign diapers". We figured we'd wait awhile before engaging in any further dramas, but VB has taken the lead of his peers and started to ask to "use the potty" without us mentioning it. It'll be a long journey filled with reading books on body functions, but I can't wait for the day we don't have to spend $30 on a box of nappies.

7. It is remarkable to see photos of the little guy even from a month ago. Not only has his hair returned, but his chubby cheeks and tummy are back with a vengeance, thanks to a solid appetite. In addition, he's wowed us by trying some things we never thought he'd try -- including sweets, which he used to ignore completely.

8. VB will be 3 years old next month -- a miracle by any standard that should be celebrated. However, how we recognize the event is up for grabs. He's at the age now where you can transition from adult-oriented parties, where the child is on display covered in chocolate, to kid-friendly fair, where parents hide in the corner while screaming little ones cover themselves (and your most expensive duvet) in chocolate. Vampboy has made his intentions clear, stating that his birthday will take place at the "Moose Restaurant", complete with animatronic hunting victims and a puppet moose head that sings "Happy Birthday" to unsuspecting patrons. I don't know if that can symbolize the momentous event, but it reminds me that VB is not really a cancer survivor, caught in the "miracle of life" glow -- he's just a kid who likes his mac and cheese while some Buffalo head makes a joke about not having a body.

3 of 8

2008-01-14T20:06:00.000-05:00

8 things I'd like to say 8 people right now.

1. "Don't ever do that again -- I eat people like you for breakfast."

2. "Are you kidding me?"

3. "Peuggers."

4. "What do you care more about -- your bottom line or the people you' re supposed to be helping?"

5. "Sounds to me like a serious case of ennui."

6. "#1 goes for you as well, moron."

7. "This was a complete waste -- I demand you give me back the last two hours of my life!"

8. "No, I will not tell you who these 8 people are. Maddening, isn't it?"

2 of 8

2008-01-08T19:45:00.001-05:00

Today sucked.

First, Vampboy decided to get an early start to the day at 4:30am. Once that cute little voice says "daddy change my dieyyyyaper", there is really nothing else to do but get up and do his bidding. However, the fresh nappy didn't translate into a fresh attitude, so the next few hours were spent listening to the high pitched-voice that had the neighborhood dogs running for cover.

This translated into being late to work during one of the ever-increasing times I call "hell month". In the non-profit world, January is often the first in a series of these, due to every foundation and government agency deciding to make all your funding dreams come true -- that is, provided you submit a 75 page thesis on everything you stand for and the reason why anyone should give a damn.

Fast forward to a lunch meeting when, in the midst of my chicken salad sandwich, my phone vibrates with "home" on the caller ID. Since the new normal requires constant connection in case of "the worst", I charge out of the room to take the call. Turns out our little guy had a break-through seizure today. Think of it as "seizure light" -- it lasted less than 5 minutes, and after a period of staring into space he snapped back to reality as if a light switch was suddenly turned back on. He was with Vampmommy at the time, docs have been consulted with, and all is once again well...However, you try to get a "don't panic but I want you to know" call about your child, then go back to work without losing focus.

However, I wrap up the work day with some modicum of focus, then it's off to renew my commitment to Bikram Yoga. After a day of having my patience and emotions kicked around, why not end the day by kicking my physical self a bit?

I get home, still sweating from class (and that's after a shower) and inhale a salad and tall glass of water to prevent my passing out. VB and VM arrive home form errands, and seconds after they enter the house an avalanche of snow slides off our condo roof, landing right where Vampboy had been standing seconds before. Okay, breathe......

So, rather than continue down the dark path, I thought I'd end my day with an upbeat list of 8. I think I'm veering from the rules somewhat in making up my own list topics, but I feel the appropriate amount of slack has been cut on my behalf. Take this, lousy day!

8 Things that make me happy

1. Grande Soy With Whip Mocha. While I agree that Starbucks is growing into the evil Wal-Mart of coffee, I can't help but feel the nostalgia for sweet days gone by every time I take a gulp. I close my eyes, and for a moment I'm back in college, slinging lattes with the best of them.

2. Amy Winehouse. All right, I know this woman is a complete mess, between her rampant drug use and dysfunctional marriage. But I have spend many a night in the past year mixing VB's medications while blasting "Back to Black" on the trusty Ipod.

3. Dark Chocolate Peanut M&M's. I think they started making these as a promotion during the last Star Wars release, but they were wise to keep them around. Yummy.

4. Law and Order. As reliable as the rising of the sun -- not a moment goes by where you couldn't turn on the tube and find a station ringing out the familiar "doink doink" of the gavel between scenes. While I'm not a huge fan of "Criminal Intent", the original or "SVU" keep me entertained.

5. John Stewart and Stephen Colbert. Islands of sanity in a sea of American psychosis.

6. The smell of a new CD. ITunes might be convenient, but there's nothing like the smell of a CD booklet the first time you take off the plastic (and that damn label strip) and open the case. Happiness also increases with respect to the quality of the music located within.

7. Demotivators. My sense of humor is rather dark -- as it should be. These digs at cheesy corporate leadership prints are laugh-out-loud brilliant.

8. Clue - The Movie. I've seen this so many times I think I can enact the entire film myself, playing every role. Perhaps that will be what catapults me back onto the stage after years away.

Now I'm all smiles!

1 of 8

2008-01-03T19:57:00.000-05:00

Oh, Papa Bradstein -- how you torment me.

During one of my last fellow-blogger check-ins before my self-imposed exile, I discovered that this blog-hound tagged me with an "8 days a week meme". Not one who completely understands the concept, I did enough digging to figure out that it would have to wait until my return. This also provided me something to fret over during my time away -- as if I needed anything more (as you will discover shortly). However, now that I'm ready to put hand to keyboard once again, this seems like the perfect way to get you all caught up and to share my vast knowledge about several things that are completely mundane.

So, over the next 8 posts, I will introduce you to The Truth. Mind you, it is indeed "out there".

8 Things I did during my "vacation"

1. Bent myself into a pretzel, and cooked until golden brown.
Yes, I finally made the plunge and became a practitioner of Bikram Yoga. For those not in the know, this is the yoga done while you sweat away your very soul in a room heated to a toasty 105 degrees. The first time I did it I thought I was going to die. The second time, I needed to lie still for the second half of the 90 minute class, but the end of my existence didn't loom as large on the horizon. Over the next few times I got the hand of it, and by now I think I can get through the entire class without passing out. I say "I think" because....

2. Enjoyed a return to Chez Healing!
Yes, Vampboy asked for a pony for Christmas -- and Santa responded by giving him a lifetime seizure disorder. This is one of the many things that fall into the category of "latent effects" brought on by brain tumors and their subsequent treatment. We spent the entire week before Christmas at Chez Healing in two separate residencies -- each brought on by a seizure he had at home. The first was rather small, but the second was rather large. Vampboy doesn't have the type of seizures where he flails about like a fish out of water; rather, he has "partial complex seizures," where he slowly blanks out until something just short of a catatonic state comes over him. Initial tests gave the chilling possibility that the cause was a relapse in his cancer -- giving us about 48 hours of sheer terror and panic -- until further tests concluded that was not the case. I'll tell you, though; it's really a sad state of affairs when you're actually glad that your child has a seizure disorder -- but the other option was far, FAR worse. At present VB is doing well and seizure-free, thanks to a medication he may be on forever. Plus, the whole affair put a huge crimp in my overall plans for a restful month, not to mention taking me away from my "sweaty stretching class".

3. Power-shopped.
The other challenge wrought by the above activity was the delay in getting the holiday shopping done. Although abject poverty reduced our ability to be generous with many of our loved ones, a little help from some kind sources gave us at least the ability to buy tokens for our family. So, with Vampboy off with relatives, I did a mad dash to the stores the weekend before to contribute what I could to the December economic figures. What I found most amusing is that I was surrounded by what I've come to understand is the typical profile of the last-minute Christmas shopper: Male, and carrying at least one bag from Victoria's Secret. Guys, really -- can't you think of something that she might actually enjoy, not just you?

4. Organized the "War Chest".
It had been a year since I'd done any filing of our various papers -- bills, receipts, etc. Add to that what I estimate to be over 600 "Summary of Benefits" forms from Vampboy's insurance carrier, and I ended up spending a huge chunk of my waking time sifting through a pile almost bigger than me. Everything is now filed in it's proper place, with all things medical in a large, highly organized storage bin. Here's hoping that we never have to add to it.

5. Watched the first 3 seasons of "The X-Files" on DVD.
What else was I to do while engaging in #4? There are two things this taught me: first, I still think Gillian Anderson is hot. Second, I'm glad they got rid of that damn brown brief case she seemed to carry in every scene of the first season. And the shoulder pads - good Lord, she looked like a tiny football-playing office worker!

6. Celebrated a couple of holidays -- maybe you've heard of them?
Both Christmas and New Years were peaceful and without drama. Santa did make up for the seizure thing by getting the one present VB had talked about for months - a red plastic cup with a straw. Strange, but it's better than him asking for a Playstation 3.

7. Went All-Natural.
No, this was not my attempt at living as a nudist. As a family thinking about moving into "survivor mode", one of the things we decided to do was look at how we could eliminate things from our environment that increase the risk for cancer. Our main plunge was to switch all of our cleaning products to stuff that's entirely natural. We're lucky to have a local shop that specializes in that very thing, so our house is now clean as a whistle and smelling of Lavender (which, as it turns out, is a natural anti-bacterial).

8. Itune, Youtune, we all scream for...
While I didn't get to my entire collection (not even close, in fact) I did follow through on some uploading of my current CD catalogue onto Itunes. However, it leads me to believe that I might need to acquire my own Mac to finish the job, for fear the one we have might explode under the musical weight.

One down, seven to go. Watch out, Bradstein --- revenge will be mine!

Construction Time Again

2007-12-31T11:05:00.000-05:00

There is an office building not far from where I live that burned to the ground last spring. I drove past it as it was burning, and watched the flames and smoke billow into the sky for quite some time. All that was left was a low-wall of bricks and the occasional piece of siding, overshadowed by a black skeletal frame and burnt remains of what used to be.

Within a few months, though, you'd never know it had happened. It wasn't long before charred beams were replaced by brand new construction -- and in what seemed to be a matter of moments, the building stood as it once was. Just like that, damage was all but erased, and the town returned to having a conveniently located office complex to find mortgage and real estate services. Hooray.

If only life were like that -- things fall apart, fire lays waste to your existence, yet there are happy little construction elves who can return you to normal without so much as a scar. I had hoped that my sabbatical from the daily grind would restore me to my optimal freshness. While I've had some great highlights from my time away, the one lesson I have learned is that the only elves that exist are those that are busy ensuring that Santa brings Vampboy the toys he asked for -- or shooting Orcs in Middle Earth.

We are changed forever by our experiences, both good and bad. While our impulse when things go wrong is to try to return to the way things were, I've come to understand that it doesn't work like that. Instead, the work is not to "rebuild", but rather to construct something new out of what remains. It will never look the same, but hopefully it'll be roomy and well-lit with plenty of storage space for better days.

I'll be back with tales from my time away later this week, but thought I'd post to wish you all a happy New Year -- this one is definitely better than the last one, so hopefully it's only getting better from here.

It's good to be back.

Hibernation

2007-11-30T20:33:00.000-05:00

"Well I'm searching for somethin'
That I can't reach
So I whisper your name
In my sleep.
'N time isn't giving me,
The space that I need.
But you know at this pace,
I don't think I can pull into the lead."

It is too much for one person to handle -- cancer, the battle against death; watching helplessly as your child, the being you'd give your very life to protect, suffers with nothing you can do to stop it. And yet, here I am -- and here we are. I don't know how we did it, and I don't know how I'll do it again if some future scan brings us back into the darkness. If this experience has taught me anything, I am clearly aware that all I have -- indeed, all that any of us have -- is this moment, right now.

In this moment, I'm tired. The aforementioned struggles have been fought while I still get up in the morning and go to work. My job is demanding, but I love it -- I love it enough to let it take me from my family 8 hours a day, 5 days a week (sometimes more).

Finally we return to something that looks vaguely like the life we had. There are still many questions needing answers, but there is a familiarity returning to the day-to-day on my end. Yet, I can feel "it" still within me. It's is in the clenching of my jaw when someone shares their relief that the nightmare is "over". It's in my throat every time I look at a recent photo of Vampboy at school, when I feel as though I may burst into tears right then and there. It's in the fear that crosses my mind in the darkness of the night, as he snuggles next to me looking for a safety he doesn't realize I can't actually provide.

"Cause I can't carry this around any more,
It's getting heavier with age.
It is the boulder in my stomach.
It's the avalanche in my veins."

What is "it"? It's what this experience has done to me. I am the classic "hero" -- willing and able to stretch myself to the breaking point to save the world, all the while functioning on fumes and a healthy dose of denial about how sad, angry or messed up I feel inside. I am also keenly aware what happens to heroes if they don't take their time to fall apart. It would be easy for me to bury myself in my fantabulous job and fill every waking moment outside of work running errands, making dinner, putting Vampboy to bed, visiting friends and family, etcetera, etcetera. Then, eventually, what is stuffed neatly in a corner of my heart would escape from its cage and tear me apart, along with anyone within a mile radius of me. I know better than to allow it to get to that level. So, since it looks like Vampboy is okay for the moment, it's time for Vampdaddy to take care of his eternal self.

"So let's leave it behind -
I want to bury it beside the road.
I will sit there until it comes out of me
I'll be freezing in the summer desert cold."

I am going off the grid for awhile. In real-life, that means I'm taking the month of December off of work -- most of it, anyway. Vampboy will be in school, Vampmommy will start her own process of regrouping, so my time will be my own to rest and re-charge. I have no big plans -- there will be some yoga, there will be some art, there will be some time sitting around in pajamas, watching some sweeping movie epic while continuing the never-ending task of uploading my entire cd collection to I-Tunes (anyone who knows me knows that this last activity would most likely require a year-long sabbatical to complete, but I might as well start somewhere). There will also be some holiday cheer and family-time, which is always good to approach well-rested.

There will be some writing -- but it will not be here. There are some things I need to document, experiences I need to put down, feelings I need to articulate that are not for this venue. They will find their own home, I'm sure - and I have no doubt that some day they will reach your eyes and you will once again share with me your grace and kindness.

This is my fancy way of saying that "off the grid" also means that I am taking a break from the blog. Not for long -- I expect to have some witty post prepared to kick off 2008. But December is for me, and I'm hoping to let my soul guide me through my own process for awhile. I promise I will break my silence should I have something to share regarding Vampboy's life and journey, so keep checking back -- but no news will be good news should it remain quiet here.

To you all I extend my warmest wishes for a December full of joy for you and yours. I have written before of my gratitude for everyone that has helped make my blog a sanctuary for me, and for the gifts both literal and figurative that you have offered to my family. My feelings on that matter, and for each of you, remain steadfast. I look forward to a return to Vampdaddy in a few weeks with renewed energy, spirit, and fun stories to share about the outcome of Vampboy's ever-growing Christmas list (there's a six-foot tall inflatable snowman on it at the moment).

The journey continues.....

"Somehow we get there,
From wherever we are.
Somehow we get there -
No matter how far"

"Somehow We Get There" by Melissa Ferrick.

Post-Turkey Haze

2007-11-25T10:07:00.001-05:00

It has been an entertaining holiday weekend at the Vamp Lair. Thanksgiving day was a family affair with Turkey in all it's forms -- turkey pot pie for lunch, sliced turkey and cheese for snack, and then the full-on tryptophan-tastic traditional turkey dinner. Yummy! The rest of the weekend has been spent visiting with friends, eating left-overs, and playing games - including the New England favorite of candlepin bowling. Those of you not living on the East Coast have no idea what you're missing!

The next MRI has been scheduled for February 1st. Having a date assigned is an odd feeling -- I guess a reminder that it'll be a long time before C-Camp is out of sight. In the meantime, Vampboy has happily transitioned off all of his medications (except for an anti-biotic he'll stay on for six months), and this weekend we are celebrating the end of his overnight feeds through his MIC-KEY Button. The button has to stay in awhile longer as we wait for proof that his growing appetite isn't going away, but to go through a day without having to "plug him in" for medications or that bland gray liquid is something I never thought I'd see -- much like his hair, which is starting to make a subtle appearance on his shiny little head.

Thanks to all who emailed and shared compliments about VB's Thanksgiving picture. I should note that it was taken by his teacher at school, who has been gracious enough to send us detailed photojournalist-quality reports on his days at "Chez Learning". How she is able to get him to sit there and smile without a "don't take my picture" freak-out is beyond me. It speaks volumes to her talent, and the fact that I think VB has a crush on her. What a player!

With Thanksgiving 2007 a thing of the digestive past, you may be wondering what would make Turkey Day 2008 even better. Might I recommend a Turducken? I friend introduced me to the concept recently, and while I've yet to try one, I gravitate to the idea like drivers slowing down to look at the results of a violent car accident. I mean, who the hell thought this up?

Gobble

2007-11-18T22:00:00.001-05:00

Master Over My Domain

2007-11-12T13:57:00.000-05:00

So, in an attempt to lock-in my cyber-identity, I purchased my domain. So now, if you enter www.vampdaddy.com or www.vampdaddy.net, you get directed here. Isn't that exciting? I've also decided to purchase my real name. Apparently, I'm only worth about $2 at the moment, so it was a bargain. Don't bother trying it if you know my real name, though -- it won't direct you here. I figured I'd just save it for when I'm a rock star.

On a related note, in case anyone is curious, this is NOT me:
www.myspace.com/vampdaddy

The Bridge

2007-11-06T21:24:00.000-05:00

When Vampboy was first diagnosed with Cancer, the oncologist who broke the news mentioned at one point that, for many, the end of treatment is actually harder than the beginning.

I now absolutely believe him.

Don't get me wrong -- the return of things like "free time" and "Vampboy's eyelashes" are celebrated milestones that are so indescribably good I don't think I can put it into words. However, the adjustment back into a normal existence is a shock to the system after so much time in Cancer World/Chez Healing. Then there is the added complexity that comes with the knowledge that what we had is forever lost to us -- and that even this "new normal" can be taken away from us at a moment's notice.

So we are left feeling like we are standing on a bridge between two worlds: Cancer World and "No Cancer World". Here's the view from either side:

No Cancer World

My son as a duck!
There are two great things about this photo: first, that VB had his first Halloween in over two years that did not take place in a hospital. And second, that this photo was taken at the Halloween party AT SCHOOL! That's right, VB will return to the land of toddler-studenthood this week, with last week's visits serving as a warm-up.

In the meantime, we navigate explaining to people where the end of treatment leaves us. One person actually asked if it was time to remove VB from their prayer list. They were not happy when I said "uh, no". Since VB will be 3 soon, we have to move him from his current "early support services" therapy folks to the special education program in our town. So soon we'll be negotiating our first Individualized Education Plan. What fun.

Cancer World

Our partners in treatment continue to battle on, with mixed results. Othergirl's prognosis is still in darkness as back-up plans leave little to celebrate. Princess is in the ICU this week for reason's we're unsure of, and the littlest fighter (there is a 4th -- have I mentioned that?) continues to battle on. Yet, we're not there for the day-to-day updates and support. Our new experience is the one they continue to dream of, and there reality is one we don't wish to revisit on ourselves. Sure, there's email and blog updates -- but its not the same when you're not in it.

Of course, the worst part about being on the bridge is that we can never truly leave Cancer World totally -- and No Cancer World isn't a secure home. From whichever side you view it, Cancer still sucks.

The 2007 Vampdaddy Halloween Post

2007-10-31T13:53:00.001-04:00

Wow, three posts in three days? After yesterday's good news I'd usually sit back and bask for a few before getting back in the writing game, but with Halloween upon us I couldn't miss the chance to once again amaze, horrify and entrance with the second annual "Vampdaddy Halloween Post".

First, something totally gross....BRAAAAAIIIINS! BWAHAHA!

Okay, maybe not gross, but certainly fascinating -- this is an MRI scan of Vampboy's little noggin' from yesterday. Note the black spot on the lower left -- that is the "tumor bed", or rather the "former" tumor bed. This is the photo from the widest point of the area (the tumor was about the size of a ping-pong ball). Provided that the cancer doesn't return, it is likely that the open space will remain there forever. Yes, he is one hole-removed from being a bowling ball. But there's nothing that pleases us more than seeing that black, empty space -- it holds within it his very survival.

Next, a little Vampire Trivia. BWAHAHAHAHAHAHA!!!!!!!

1. Bela Lugosi's film version of Dracula is not the first -- nor is the German film "Nosferatu". In fact, the very first film version of Dracula is lost to time -- only a few still images remain.

2. Vampires are obsessed with counting -- Jim Henson, of course, knew this! So, when being pursued by a member of the undead, spill a box of uncooked pasta as you flee. The vampire will have to stop and count it all before continuing the chase!

3. Actual accounts of Vampires -- in particular those that involve digging up a body long-thought dead and having it look like it is still alive -- is now understood as being bad timing and a lack of understanding about decomposition. The book "Vampires, Burial and Death" gives a lovingly detailed description of the process of decomposition and how it relates to what Vampire hunters and terrified villagers observed. So, the next time you dig up a body (that was not embalmed, by the way), don't be surprised if they look very much alive. Happy digging!

Bwahahaha.

VB 1, C 0

2007-10-30T21:30:00.001-04:00

Today is a day in our corner -- the MRI was clean. Next stop will be a visit to Brain Tumor Clinic next week to finish up the process of transitioning to "survivor mode" (whatever that means), followed by gratitude at todays results slowly giving way to anxiety as the weeks pass towards the next MRI in January.

As the day started with a departure for Chez Healing at 5:30am, I'm too tired to say much else witty, and am in desperate need of some down-time in front of the television(there's lots of Tivo to catch up on when you don't allow your son to watch TV).

Tune in again tomorrow night, for the 2007 Vampdaddy Halloween posting -- a little Vampire trivia, and perhaps something else ghoulish to mark one of the greatest of holidays!

Pins and Needles

2007-10-29T20:43:00.000-04:00

When I was younger, my overwhelming excitement at the thought of Christmas usually left me lying awake all night long Christmas Eve, so excited I could hardly stand it. After months of studying in detail the Sears Catalog, I would wonder in giddy fits of glee which of the amazing Star Wars action figures sat, waiting under the tree for me. I think one year I got myself so worked up that I actually broke into a fever and started hallucinating. Thankfully I calmed down in my later years, and now get a pretty decent sleep that night.

But not tonight. Tonight, I will not sleep well -- and, unfortunately, it will not be due to the anticipation of the latest x-wing fighter. No, I will not sleep well tonight because tomorrow is "MRI Day". Granted, by the time most of you read this, the MRI will have come and gone (it's scheduled for around 8:15am on Tuesday). And as soon as I know any results, I'll post them. However, at this moment, tomorrow could be a great day -- or Father's Day 2005 all over again.

I wonder how I will do this whole "survivorship" thing. It's the ultimate in cruel and unusual punishment: we can try to return to a normal life, but we need to do it knowing that, at any moment, we could once again have the rug torn out from under us. My mind has already begun the natural tendency of bargaining and denial with thoughts like:

1. "Tomorrow's MRI will be fine -- after all, we're just a couple of weeks away from his last chemo dose! Rest, relax, and don't worry."

2. "Tomorrow's MRI will be fine -- but January? Dude, I'd be REALLY worried about that one...."

3. "Pleasegodtakemetakeeverythingelsebutdon'ttakemyson......"

And the night before begins.

Props

2007-10-24T22:20:00.000-04:00

Photo of Vampboy's party tent by "The Manny"

Not far from my home, Extreme Makeover: Home Edition is putting the finishing touches on a brand new home for a family in need. I don't know the family, but their house was washed away in flooding about a year ago (not a common event where I live) and they've since been living in a tiny apartment practically on top of one another. As the "move that bus" moment has gotten closer, my commutes to and from work have been delayed by throngs of people gathering to volunteer, observe the workers or stalk Ty Pennington.

While my cynicism runs rampant with thoughts of the enormous property tax bill that will await this family after the magic of the moment wears off, the whole process has made me think of how people come together to build things. Sometimes it's something tangible, like a house -- or an old-style barn-raising (can I get a "yee-haw"?).

But other times, it's something more important than that. It has been quite easy to fall into comparing the last year and a half of my life to those sad stories you here about on shows like "Extreme Makeover". Of course, we rent -- so tearing down our current home and rebuilding the house of our dreams might not please the condo association. But when I watch people roam through their new spacious kitchens and bedrooms modeled after their favorite sport, I think about the world that has been propped up around us by others since Vampboy got sick. Lonely rooms of dark isolation have been turned into sun-filled spaces with the voices, thoughts and prayers of so many that have given more than pipes and walls and electricity -- they have given hope, and laughter and peace. Maybe they won't keep me dry from literal rain, but on a figurative level they are far more important than any building that could have been provided.

On Saturday, under the tent you see above, many of you who were part of that gathered. And, every day, many more check in here to see how things are going and email a shout out to the Vampfamily. When our world fell apart, people like you came in to help us rebuild. I still want back what was lost, and I still morn the security and peace that will never exist in our lives again -- but I treasure the space you have given us to struggle through and carve out a fresh start, and to move forward with some sense of hope.

So, my thanks again to each and every one of you, from near and from far, that continue to be part of our community and family. My son would not be alive today without everything that each and every one of you has done for us -- and I mean that. As there is no way to thank you that would even compare to the gratitude we feel, the best we can do is continue to press forward in the spirit of survivorship.

Special thanks as well to our families for providing space and party supplies, and to those who came from near and far to play in the leaves and bounce in the house.

The next big event will be a rather scary one, as Vampboy will return to Chez Healing for a few hours for his first post-treatment MRI on Tuesday. An update will certainly be posted here as soon as we have it. In the meantime...

Cloudbusting

2007-10-20T00:04:00.000-04:00

"Every time is rains
You're here in my head.
Like the sun coming out
I just know something good is going to happen."
- Cloudbusting by Kate Bush

The rain and the sun are duking it out -- but it appears the sun will win out. The Weather Channel has moved in our favor, and VM and I no longer pace in front of the TV for "Weather on the 8's". As we get ready to party on schedule like it's -- well, you know -- life continues to run its unexpected and sometimes difficult course.

I got a call that a friend died yesterday. This was not someone I see regularly, but our connections were always meaningful and I valued her presence in my life. She is someone I'd known through other people, but we had spent some time together in a spirituality group a couple of years ago that was an experience I came to value.

What I always admired about her was her sense of presence and calm. She was older than I am, and had moved away from the hectic human service "work until they suck you dry" mentality that many of us in social service fields have. Instead, she embraced her desire for quiet spaces and time to herself, which she noted made her value even more the time spent with friends and family.

She was coming to the party -- in fact, she had emailed earlier this week that she was hoping to be original in her pot-luck contribution and not contribute the "1,000th potato salad." And now she's gone -- just like that. A reminder of how fast things change, it easily brought me back to the very beginning of this journey we've been on.

When I returned to work after VB's diagnosis, she was one of the first people I saw, and she broke through my "work shield" with a big hug and tears of understanding. She had been in quite a serious car accident over this past winter, and had made a remarkable recovery -- which makes her passing more of a surprise to those who knew her. Even when she was almost unable to move and in very real physical pain, she continued to take time to email and remind me that she was one of the legion praying for VB.

Our experience has taught me that death and tragedy serve to bring people together in ways never before imagined. Many of the gaggle of people (that would be some of you) who are descending on my in-laws lawn in a matter of hours are people I never expected would play such an important role over this past year. New friends and family have entered our lives, and one's previously thought relegated to history have made surprising and special returns. Relationships long-standing have deepened, and my wife and I are pouring with gratitude.

As we gather together today to celebrate my son's life and the community that worked to save it, I will think of my friend. I will remember the spirit she imparted to me, and the wisdom she had that I now have within me. I will gather in a small group with those who knew her and feel again loss and connection.

And the sun will shine and my son will bounce in his big bouncy-house and the world will, for one shining afternoon, be the place of peace and serenity my friend always envisioned.

Future Tense

2007-10-17T22:00:00.000-04:00

We are sitting, staring at the screen with rapt attention -- our hands wringing in worry, our eyes wide with fear. There it is, right in front of us; that thing that can make our dreams come true, or be the potential truth to our deepest fear.

What is it we're looking at -- and MRI Scan? Test results?

Not this time. This time it's the Weather Channel .

My wife and I have always been party people. Before VB was born, before we downgraded from home ownership to condo rental, it was not uncommon for us to throw one or two bigs parties a year. All the trappings were present; good music, great food and self-designed invitations that would make Martha Stewart head back to prison pleading for mercy from the sheer beauty of it.

The last year-plus of cancer drama had taken the party out of life -- until now. With the end of treatment upon us, and our son's eyelashes starting to grow back, our families have come together to put on a bit of a bash this Saturday for our little guy. With a gaggle of people expected, plans have been made for a largely outdoor event.

Hence the current moment, and several over the past week, as we have been glued to any number of tv and web-based weather reports, watching the forecasts. There's nothing worse than clouds, wind and rain to put a damper on a 2 year-old's bouncy house fun. And, as it happens, it's looked for awhile like Mother Nature didn't get the "Don't F#$%^ with the Vampfamily" memo.

The latest looks like morning showers will give way to clouds, but nothing that would get in the way of frolicking in the fields. Good thing -- as the idea of trying to reschedule a party with over a hundred guests doesn't really appeal to me.

Although, it's nice to worry about something normal like the weather.

Most family and friends should have received info about "said event", but if you didn't and your local, email me for details...And watch the skies for sun.

The Long Goodbye

2007-10-08T20:40:00.000-04:00

Well, well...Did Chez Healing hear my cries? I'm in!

We're back for our last bout of fever, and hopefully we'll only be here a few days. We knew this was coming, so this really marks the potential end of hospitalizations. From here we just move up...Hopefully.

Along with the last hospital visit, we are also beginning to reach other milestones worth marking. In particular, now that the chemo has been through his system his nausea has subsided. This means that Vampboy can start coming off of the anti-nausea medications that have been part of his daily life since July of 2006.

So, it's time to pay tribute.

Reglan. You are orange, sticky, and taste of butterscotch. Of course, VB would not know that, as we've bypassed the mouth and given you in other ways (through IV for awhile, and through his feeding tube the rest of the time). My wife was put on you once when she was pregnant and sick, but you caused her to erupt into a panic attack that lead me to remove her from the ceiling. Apparently it's best to take you with Benadryl so that doesn't happen. Vampmommy's docs didn't know that, but fortunately VB's did. Thank you for your service.

Benadryl. I used to run camps for middle school students, and used to be aghast at the number of parents who told the camp nurse to give their kids benadryl to help keep them calm and to sleep at night. Yet, you will be the trusted friend I will miss the most. You have kept Reglan in line, and even helped stave off the itchiness that comes with regular use of morphine. Thank you for keeping Vampboy from any number of psychotic episodes that could have materialized.

Zofran. You are clear, and I am unsure of your flavor. You are the gold standard of anti-emetics, and you certainly proved your worth in this case. While many have argued about your proper dosing, we were quite happy with smaller amounts every eight hours, rather than once a day. Perhaps only a psychological security, but we took it where we could get it.

Neupogen. You are also referred to as GCSF. For about two weeks after chemotherapy, VB gets a shot of you in the leg every day. His legs get bruised and hardened, and he doesn't like it in the slightest. But, you help raise his counts, and have been at the forefront of his growing obsession with band-aids as fashion necessities.

Bactrim. You are thick and pink. You come in a variety of flavors, although again it doesn't mean much to our little one. Pediatric cancer patients take you twice a day, three times a week. You are an anti-biotic and keep people with low immunity from getting sick. Our farewell will take a bit longer (about 6 months - until VB returns to full immune strength). But, before we go any further, I need to admit -- we have not always been faithful. Yes, when VB's counts were at their lowest, we'd skip using you for a few days. Turns out that your strength in protecting immune systems is balanced by the fact that you can sometimes slow the rise of ANC and platelet counts, which we really needed. Please forgive us.

Cephalexin. You look like Bactrim, which can prove confusing when it's late at night and you drop the syringes. However, if I keep everything straight you are extremely helpful in combating the infection that seems to stick to VB's MIC-KEY Button site every time his immune counts drop. In fact, that very infection is why we're in right now. I look forward to you completing your duties in the next week, and wiping that damn infection out for good.

Protonix. You are normally only available as a pill, so we need to go to a special pharmacist to have you compounded into a liquid. Terribly inconvenient, and also expensive, since the pharmacy doesn't interface with insurance providers and ours has proven difficult to get reimbursements from. However, you keep VB's tummy from freaking out over the presence of the MIC-KEY Button, so for that I am grateful.

Ativan. I have to admit -- I never really liked you. You are incredibly potent, which means I have to squint to draw up the tiniest droplet of you to give to VB. You are also highly, highly addictive. So, it will take weeks to finally get VB off of you. However, my dislike of you is balanced by the sweet relief you give him for nausea -- with the added benefit of a mood stabilizer. I fear we will have quite a 2 year-old on our hands when he has nothing but his own emotions and moods guiding him.

To all of you, my thanks. May I never require your services again.

This Joy

2007-09-30T21:26:00.000-04:00

Yet another example of best laid plans...Who knew that Chez Healing would block access to Blogger as a "social networking site"? And, with the option to email a blog entry not activated, I was up a blogging creek without a paddle. Apparently you can only write about your experiences as a sick person if you use Care Pages.

In the end , this is all that matters.

Send up the sun now
The midnight darkness
Is nearly through...

End Begins

2007-09-24T23:04:00.001-04:00

And so it comes to this -- on Friday of this week, we will enter into the hospital for Vampboy's last chemo round.

We are ready, yet we aren't. We are excited, terrified, tired, energized -- it is a schizophrenic time. But ready or not, here it is.

To mark the event, there will be some special posts, starting Friday night -- so if you're around this weekend, tune in for sure (or check back next Monday and catch up). This is a profound moment to share with our community -- and you, dear reader, are a part of it.

In the meantime, and with thanks to Metrodad for posting this in his blog, please check out the video below. It's really intense, really beautiful, and captures what cancer can do to a person.

To Friday....

VD

Why, Part 2

2007-09-17T23:40:00.000-04:00

Scene: 10pm. Vampboy has a fever of 102. After loading the car, he vomits pedialyte, strawberries and supplemental formula all over himself and me. As he cries hysterically, we clean him up and throw him in another shirt for the hour-long trip to the ER. His symptoms will most likely lead to a stay in the hospital for a day or two. Vampmommy grabs more bibs and towels, heading towards the car in a rush. Vampboy's hat is missing, but time to search for it is slim. Vampmommy's mom is in the back seat, working to keep Vampboy calm as I click him into his car seat.

VD: I need to you be calm, and take deep breaths (VB). If you keep crying you'll make yourself sick.

VB: (sobbing) I go now. Hospital. Shut door. Get in car.

VD: No, son -- I'm not coming. Mommy and Memere are going to take you to hospital.

VB: (sobbing stops) Why.

VD: Daddy has to be at work in the morning. Mommy and Memere are going to take care of you.

VB: Why.

VD: (pause)

VB: Why.

VD: (pause)

VB: Why.

VD: (pause)

VB: Why

(The sound of a heart breaking is heard.)

Fade to black.

Fisherman

2007-09-07T16:00:00.000-04:00

There is a beach.

Let it be said that, as a general rule, I am not a fan of nature. "Roughing it" in my book involves a few hours with no electricity and take-out food. I don't like bugs, my pale skin hates the sun, and I find feeling hot (or really cold) as a generally unpleasant experience. I am even less a fan of sports -- save the Westminster Kennel Club and the Tour De France (pre-doping scandals).

Yet, there is a beach. It is at the point of Nantucket -- Great Point is, in fact, its name.

When Fisherman first invited me to an October fishing expedition on the beaches of Nantucket, I laughed at the thought. Yet, in need of a vacation and wishing to seize upon the strange and sacred practice of "guy time", I opted to go. Channeling my inner hunter, I stormed the surf -- adorned in my leather punk biker jacket and LL Bean waterproof hiking boots.

One trip turned into two. A pair of leather waders and a well-worn finger jockey joined my closet. The time spent on that beach, and countless other locations on the island, quickly became a sanctuary I wished to return to regularly. Fishing was only the excuse -- whether we caught anything or no (and what we caught we mostly threw back), the purpose of the trip became one of spiritual communion with a good friend and -- yes -- with the sky and the sand and the sea.

I found another person within me on those trips. Fisherman is one of a small number of my closest confidants -- the "Executive Board of My Life", if you will. We would wander through surreal imaginings together, rolling along in his jeep listening to music I never listened to at home. Grateful Dead, Phish, John Lennon -- and let's not forget Zappa. Most of the time was spent in giddy laughter, while other moments were in the quiet silence where true friendship and connection to the world often reside.

Fisherman and I have been through a lot together. When the agency I worked for needed strong leadership, Fisherman joined me in the fight. Both of us share a passion for representing the best of what it means to be men -- and experienced the joy of becoming fathers with a great sense of pride in one another. When my journey took me to new career paths, Fisherman continued the fight we had started together.

Eventually, life handed opportunity to Fisherman and his family, and they decided to leave the mainland for life on the Island. Like Frodo on his way into the West, there was a feeling that a true dream was coming to pass.

There is a beach. And, off of the beach, life happens. My trips to Nantucket have been curtailed -- first by my son's birth, and then by his cancer. When the worst struck, Fisherman was ready to leap on the first plane he could to be by our side. In the darkest moments of this journey, his voice on the other line has been one to guide me, and keep me sane.

Between prepping the cocktail of nausea drugs to get Vampboy through today, and cleaning up the whirlwind of a day's life, I didn't get to bed last night until 1am. The morning was a rush of getting VB and VM ready to head out to Boston for another day of Chemo, then off to work to address the fact that a funder that had been supporting my organization for 8 years decided to deny our continued funding request without ever informing me. That, on top of the emails and phone calls and letters to get out and meetings to arrange and and and and....

And then there was an email.

There is a beach..And Fisherman is there; alone, save for a seal that brings to the shore an otherworldly presence -- as if God has come to earth as a sea creature. In the quiet of that moment, in the presence of the Great Seal, Fisherman has written about his pain, that has come into his life over the last year:

The Jeep that brought us to the beach, that connected us to the surf, died after 8 years of memories and travel. I immediately recalled our first year fishing together, as we'd drive around the island in a Saturn station wagon, and flail towards the beaches breathlessly carrying our gear. The Jeep was bought after that, and became the Millennium Falcon of vehicles.

Fisherman, like myself, is a dog person -- and this year one of his dogs passed away. I picture that dog -- and my own, who is still with us as ever but beginning to show his 12 years of age.

Then there is Doc, another spirit connection for both Fisherman and I. In order to build his Utopia, Fisherman worked hard to recruit the inner sanctum to head for the island as well (myself included). While it didn't work for me, it did for some -- and Doc was one of the folks who took the plunge and swam 35 miles out to sea. While he still lives and breaths, his efforts to better the community have resulted in his exile. His heart, and Fisherman's, is broken.

As I read again the update in my inbox, my eyes filled with tears. There is a beach, and I miss it. There is a friend, and I miss him. And there is my son's cancer, that has taken so much of my emotion and energy that I can't be as present for the people I care about as I wish to be.

I have often thought of the beach. It is a place I want to visit again. I wonder what I will do if (and when) I get there. Perhaps I'll finally take that moment, with nothing but the Great Seal and the surf bearing witness, and completely fall apart. After this experience, I should do that at least once, I suppose.

And then, I can pick up my finger jockey, and get into the surf with a good friend.

Why

2007-09-07T00:04:00.001-04:00

A major milestone in Vampboy's development has taken place this week -- with his embracing of the toddler right-of-passage known as "question everything". Let me provide a dramatic re-visioning of these critical conversations.

Scene: Monday -- Vampdaddy prepares to leave the house to attend a rally for a presidential candidate.

VB: Daddy go to work?

VD: Uh...Sort of. But not really.

VB: WHY?

VD (internal response): Well, son, your daddy is the Executive Director of a non-profit which operates under the 501(c)3 federal tax code. That code, along with OMB Circulars, prohibit non-profits utilizing federal funding for the purposes of lobbying legislators, influencing legislation or promoting candidates for election. So, my trip out of the house today is personal time, since we're largely federally funded. However, I'm smart enough to know that this particular campaign has been recruiting me hard assuming that my role as a community organizer would translate into spreading the word about what a great president this candidate would be.

VD (Actual response): Well, because.

Scene: Another day, preparing for work.

VB: Daddy go to work?

VD: Yes.

VB: Why?

VD (internal response): Good question. Perhaps I should go work for the pharmaceutical companies. The money is great, and other people can try to save the world. You know, son, I remember when I was younger and had day-dreamed about having a job and my own desk and office. Now I have it (mind you, I have a REAL office -- not even a cubical), and I'd almost give it all up to hang out at Barnes and Noble and read books until I drop dead.

VD (actual response): Because if I don't work, we don't have money. And we need money.

VB: WHY?

VD (internal response): Are you kidding? Have you seen the medical bills???

VD (actual response): Because, if there's no money, I can't buy you toys.

VB: Oh -- okay!

The whole thing is very cute -- but VM and I are placing bets on how long it will take to become simply annoying.

Up....

2007-09-03T21:20:00.000-04:00

...And away, in my beautiful balloon!

This weekend took us to a family wedding, followed by a full day at a children's story-themed amusement park -- that would be us way up in the air above. Since Vampboy is at the tail end of a chemo cycle, now is the time to crunch in as much normal playtime in public as possible.

I'm still not sure when the next round (second to last) starts -- it was supposed to be tomorrow, but with a lower than needed platelet count over the weekend we're not sure he'll make it. A delay may be in the cards, but hopefully only a couple of days.

Hopefully.

Plan (to) B

2007-08-30T23:04:00.000-04:00

Things change so quickly. I still wander most of my days in a shock that a little over a year ago, all I did was open a door -- and suddenly my life was changed forever. In an instant, everything you know (or think you know) about your very existence can be taken from you.

Othergirl's situation is not good. The tumor was indeed another AT/RT tumor, meaning that her cancer has spread. In addition, they were unable to remove the entire growth, as part of it was wrapped around her brain stem (the most common location for these tumors).

Yes, it is as bad as it sounds - so questions are being asked, options are being weighed. Meanwhile, Vampmommy and I balance our grief for Othergirl with our fear of how vulnerable Vampboy still is.

Just when you think the coast looks clearer......

Calling All Angels

2007-08-27T16:16:00.000-04:00

When we first met her, Othergirl was further ahead in her treatment than us. This journey has been a true test -- but one made easier by the fact that we were not the only ones around going through it, and we had a reference point to know what to expect moving forward. Othergirl and Vampboy had similar cases in many ways -- one tumor found, successfully taken out, and treatment has progressed with equal parts optimism for these two. Othergirl was initially misdiagnosed and started a different treatment regimen before being put on the current one, but since then we have taken comfort in our shared experience, even though Vampboy has dealt with more severe side effects than Othergirl has.

This week was supposed to mark the last treatment week for Othergirl -- but that is not to be. Last week, a "spot" was found on her MRI. It looks different than the first tumor, but something is going on in there, and whatever it is it isn't good. So, tomorrow her family will once again re-visit the horror and confusion of another surgery that may only bring more questions than answers.

And they only had one chemo round left.

I'm sure I don't need to explain here what ran through our minds as we heard the news. Behind my wife's emotions as she struggled to share with me the information over the phone, Vampboy's voice could be heard in the background saying, "Mommy sad. Mommy crying." And we only have two chemo rounds left. This could be him.

I am not a religious person. Unlike those for whom a horrific tragedy sends them deep into a faith practice, this experience has not opened my eyes and heart to any church or denomination. In fact, the basic premise of my spirituality, that the universe "unfolds as it should", has been called into question as the insanity of this situation becomes more and more apparent (I mean, one more round left -- are you f#$%ing KIDDING ME?!?). However, in the end I believe we all have within us some personal compass that points us toward that which is higher than us.

I'd ask you all to do me a favor and, wherever your compass points, bring your energy/love/reiki/prayers/meditations/interpretive dance to bear for Othergirl and her family.

Birds of My Neighborhood

2007-08-23T21:58:00.000-04:00

At the beginning of the summer, a pair of morning doves decided to make their nest in a hanging plant on our deck. The deck is off of our bedroom, and Vampmommy had just finished putting out flower pots and our little table and chairs for the season when they arrived and claimed the deck as their own.

While we were disappointed that our outdoor living space had been hijacked, we enjoyed the front-row seating to watch them build their nest and start a little birdy-family. As it turns out, morning doves can nest 4 or 5 times a season, and typically use the same location. This worked out in our favor, when the new babies and parental units flew the nest the first time I approached with a camera.

Fortunately, I caught them the next time around:

It takes about two weeks for hatching to take place, and after daily checking and Vampboy starting each morning with "morning birdies!", the not-so-little bundles made themselves known:

Of course, there's nothing like witnessing a member of the animal kingdom start a family to leave one dripping with metaphoric comparisons to one's own life. However, I'm satisfied with listening to Vampboy talk about his "baby birdies" as he looks out the glass doors, into the woods behind our house.

This weekend it looks like the window will have a different view, as our treatment schedule has once again arrived at the place where a fever and trip to Chez Healing are in order. But I'm hoping that we'll come home to find one last family-in-the-making before the end of summer.

A Spoiler-Free Letter to Harry Potter

2007-08-14T21:36:00.001-04:00

Dear Harry-

I guess I'm in the mood to write letters this week to amorphous concepts or, in your case, fictional characters. However, following her bliss is what gave JK Rowling the status of being richer than the Queen of England, so I suppose I should follow mine and see where it takes me. Forgive me if my letter takes some time to get to you. There are few owls where I live, and the crows don't take too kindly to having mail strapped to their legs.

When you first came on the scene I had just finished my graduate work. After two years of reading such riveting tomes as Theory and Practice of Group Psychotherapy and RD Lang's The Divided Self, I was desperate to get back to reading for pleasure. Since The Sorcerer's Stone (or, for the Anglo-file in me, The Philosopher's Stone) landed on my nightstand almost ten years ago, I have not stopped reading -- even though the speed of my hobby varies depending on life's other duties. Your story made me dream again -- it captured my imagination unlike anything else I had read since I was a teenager.

Tonight, while my wife and son are away at Chez Healing for the first of 3 remaining chemo rounds, I sat on the couch and came to "the end of all things" (to quote from another similar hero). That was an hour ago, and I've wandered around the house since in silence, taking in this profound moment. And, all the while, I think of my son.

While I am one of those folks that always knew I would be a parent, the experience I had that sealed the deal for me came the one time I went to a midnight party in your honor. I think it was Prisoner of Azkaban that was about to come out, and I found myself surrounded by hundreds of gleeful children and their parents, awaiting the stroke of midnight as if a great magical act was indeed about to occur. When the time came, the clerk at the front of the store began calling out the numbers given to people when they came in the door. One by one each made their way to the front to make their purchase. About an hour in, the number 254 was called (why I can remember that, I have no idea), and from the back of the store I heard a little boy scream "THAT'S ME! THAT'S ME!!!!". As if he had just one a lottery he wasn't expecting to win, the boy raced through the crowd and practically tackled the cashier.

At that moment, bearing witness to the excitement and shear joy in that child's face, the desire to be a parent was etched into my heart. From that point on, every time a new Potter book materialized, my imagination went first towards envisioning the scene on the page -- then second to envisioning me reading the story to my own children.

The dream of parenthood as become a reality -- but as you learned through your travels, Harry, sometimes the dream of family is marred with tragedy and unpleasantness. Recently, as my wife and I began our conversations about the future of our family, my wife suggested that we make a list of the things we want our son to experience. The goal is to focus as much attention as we can on making sure we take the time now to expose him to everything -- as we don't know how much time we have.

Of course, top on my list is the day when I can sit next to his bed and read to him about you. Having reached the end of your story and taken stock of it in total, I see a great many similarities between my son and you. First off, the scars -- although my son's lightning bolt is on the side of his head, and his forehead has a horseshoe-shaped one. Like you, my son earned his while fighting a terrible evil. While the end of my son's story is uncertain, you are no doubt kindred spirits in battle.

I used to run leadership camps for middle-school students, and during the closing activity of the final night I would always read to them about your discovery that you were a wizard. In the world of archetypes that you will no doubt be added to, for me you always represented the wizard in all of us. This is a secret so many miss out on; that we are beautiful beings capable of great things, who should never allow ourselves to be put into cupboards.

Rowling suggests that children be 7 years old before reading your story. Tonight, I gently placed Hallows next to the other 6 books in the bookcase in my son's room, and slid shut the door. Aside from the time my wife retrieves it to finish your story herself, they will sit waiting for the day when, like a newly discovered treasure, my son goes to claim your story for his own. With my own wand in hand, with every spell I can cast, I am working hard to see that day.

Yours in Wizardry,
VD

The Residents

2007-08-13T20:06:00.000-04:00

Dear First-Years;

It has now been over a month since you began your Residency at Chez Healing -- Congratulations! I'm sure you're thrilled to be at such a fine institution. No doubt your medical career, much like your student loan debt, is off to a great start. As the Vampfamily is in the waning weeks of a year-and-a-half residency of our own, I thought it wise to bestow upon you some of our wisdom, observations and learnings from our time there. It is my hope that these pearls can only strengthen your effectiveness as a practitioner of the Medical Arts.

As Lisa said to Wendy..."Shall we begin?"

1. Doctor Torres is hot. There, I said it. But seriously -- what is it about medical dramas that make them as standard to the tv line-up as the evening news? I think it has something to do with the public's desire to see doctors as normal people. Whether that's to humanize you all and make you less scary, or to fill our fantasy of hot docs in every exam room, it seems like we can't get away from them. But no, I'm not so naive as to think your lives are like that. Duh.

2. Nurse know best. Doctor's may make all of the big decisions in a patients care, but the nurses are the ones that really get to know the patients, and see them on a daily (if not hourly) basis. Given this, those of us who enter into hospitals become quite attached to our nurses, and as parents of a child in their care we become quite protective. The message to you, dear Resident, is a word of caution: treat the nurses well. If you don't, they tell us -- and while they may not be able to respond, I am more than happy to impale you on an IV pole.

3. You may "wanna new drug", but we don't. I read somewhere a few months ago that the average hospital patient is given the incorrect dose of medication once a day. I wouldn't have believed it unless I'd seen it, but I have. See, while the nurses give the meds, you write the orders for them. And, although you might find this shocking, we are paying attention. So, you might want to consider actually reading the 30 copies we provide of our son's medication schedule every time we come to visit. Or, if you're feeling like accessing that rare mental process called "common sense", you could log on to his electronic medical file and see it for yourself. Just a thought.

4. Let me out. Let's face it -- you're busy people with a lot to do. Patients have needs constantly -- and somewhere in there you have to sleep. Why burden yourself with patients who don't need to be there? Of course, I am talking about those of us who are twiddling our thumbs, awaiting discharge. Normally, we can see the attending physician at 8am, and not have discharge paperwork completed until 2 in the afternoon. Once, while in the midst of what should have been a simple ER visit, we spent more time waiting for the discharge paperwork than we did actually being seen! I know you have a lot to do before getting to that paperwork, but the faster you get us out, the more money you save - both the insurance industry, and the hospital. Think of the brownie-points! NOTE: When completing paperwork, remember #3 -- correct medication instructions for the trip home would be helpful.

5. Parents - the anti-drug. There comes a time in the journey of families like ours when we know more about our children's medical conditions, and the nuances of his/her treatment, than you. Respect that -- it will prevent me from wanting to hit you when you ask something stupid. Oh, and asking me if I'm a doctor when I make suggestion as to my son's current condition is not really a compliment. In fact, it fills me with dread that something that would come out of my simple mind seems revolutionary to you.

6. One last thing. Anti-nausea medications are the cornerstone of effective cancer treatment. Having them available only in oral form for children with cancer is, to put it bluntly, stupid. Do something about that, would you? Patches, lotions, anything. Could you look into that? Thanks.

Now, get to work.

Amusement

2007-07-29T20:07:00.001-04:00

In the midst of it all -- a day of normality! The clinic Vampboy is treated at held a summer festival for current and former patients and their families. VB had a few joyous firsts today: First kiddie-ferris wheel ride, first merry-go-round ride, and first ride on a pirate boat swing (above). It moved much faster that it looked, and I wasn't sure which one of us was going to make it without losing our lunch (I don't do amusement park rides very well). In the end, lunch stayed intact, and a perfect day was had by the Vampfamily.

I'll take it.

Killing Time

2007-07-27T09:28:00.000-04:00

The allure of the vampire, as with many supernatural, mythical beasts, is it's inherent ability to cheat death. While the cost of cheating death has proven a high price in folklore and fiction, we are still drawn to the existential question: will I ever reach a point when I'm "ready to die"? If I could, would I choose immortality for myself, knowing that I will watch as those I love do not? What if we could all live forever -- wouldn't that be great? Could I adjust to blood drinking from a vegetarian diet?

From these death-defying archetypes to the modern science of cryogenics (or, as some would say, "pseudo-science"), all of us must ponder our mortality at some point. Of course, most try everything they can to avoid the overwhelming truth that their very existence will one day end. We take solace in our adolescent indestructibility, or our religious faith that says death is a non-issue, with another form of life awaiting all of us on the other side.

I have been reading blogs of late written by people with cancer. As adults with the disease, they process for themselves what the inevitable reality is for their circumstance. While some fight long and hard for ultimate victory without exception, others wage the war with the understanding that, at some point, they will lose. The luxury of denying one's own mortality is lost to them, and the game of "if you had only one year to live..." isn't just a question to open an evening of entertaining philosophical discussion.

As parents, we battle to live in the same denial about our children. Certainly, the reality is that most parents will never face the loss of a child. But many with their own children have commented to me that they take an extra moment to love and hug their child, knowing that I am sharing the experience of a parent who may not fit in the "most parent category".

All I want is for this to all end. I want the last dose of chemo to enter into Vampboy, and then I want us to walk away from this chapter, as closing credits role to a rousing Oscar-worthy song. I want to stop filling these entries with the lastest in "doesn't this suck news" and turn my attention to the funny thing VB did on the way to school, or my take on the current Lindsay Lohan scandal (poor girl).

Yet, it is not that easy. For the medical team and researchers working on VB's case, we are an anomaly -- parents who are interested in what the research studies are saying, whether good or bad. At our quarterly "team meeting" with them this week, the conversation was mixed. While we revel in the latest clean MRI scan, and the sense that the follow-up scan scheduled after his last treatment cycle will also be good, the future is uncertain. There are 18 patients in the research study VB is a part of. Of the 18, 10 have completed treatment. Of the 10, 4 0r 5 have had their cancer return. With no "plan b" treatment options available, the fate of those 4 or 5 are certain. The rest? Well, very few of them are far enough away from treatment to say they are "out of the woods", but those that are will still have years and months of waiting and wonders, as the first long-term survivors of this disease.

Success means very little when dealing with a cancer such as this. Granted, as someone who looks at "risk" and "protective" factors, it appears to me that VB has a lot going for him other kids haven't: his tumor was small, the surgery to take it out left nothing visible behind, and while on treatment he's never once had a scan show any sign of re-growth. Yet, the medical establishment doesn't rest on that. They've seen equally good scenarios turn out bad -- and they've seen worse scenarios turn out better. So, they don't give any room for optimism, with the fear I'm sure that they'll have parents who feal mislead should things not turn out right. My requests for a glimpse of hypothetical prognosis, based on the context of VB's history to date, go unanswered.

What is known is that, with 2 exceptions, this cancer returns (if its going to) within the first two years after treatment. That's why VB will have MRI's every 3 months for year one, and then every 6 months for year two. Other than that, life can return to normal -- but how realistic is that?

To put this into brutal perspective....VB's first MRI after 3 months of no treatment will be in January. If that MRI were to come back with bad news, we may only have months -- if that.

So, we grapple once again with the fact we no longer have the luxury of other parents -- who plan and envision their little toddler heading off to school, or joining an anarchist artist colony. We don't have time for that. If there are things we want VB to experience and do in this world, we need to be prepared to do them soon -- with the hope that we can check off that list and create a new one as he defies the odds and lives to be 130. And, we feel the additional weight of understanding that comes with the fact that, even if daily treatments and trips to Boston end, the war does not.

None of us really know what tomorrow brings -- or if there will be one for us or our loved ones. So we fake it -- but what if you couldn't?

Freedom

2007-07-24T21:14:00.000-04:00

"Free of disease."

That was the reading on Vampboy's MRI scan today. Even though each visit to the big picture machine could change everything for the worse, we're far enough into treatment when even his doctors don't present with the same anxiety as before. In my mind this will change, when that day comes 3 months after treatment ends, and our little one slips under the radar again for a picture of what takes place when no arsenal of chemotherapy is marching around. That will no doubt be a very, VERY stressful day.

Which makes me wonder how free we, or anyone else who deals with cancer, can ever be from this disease. VM and I have started dreaming again -- about the future, about the possibility of being able to make plans beyond what to do in the next hour. As someone who spends a great deal of energy living in the "here and now", envisioning long-term future is a stretch for me. Cancer only complicates that. It is remarkable the level of your life even a history of disease can impact. It would be one thing if its influence over our future was by our choosing, but sadly there will always be places where VB's cancer battle will rule the day (read: health insurance premiums, special education needs, etc.).

And -- not to be morbid here -- how much to we factor in the very real possibility that we could one day be here again? Remember, what VB has is very, very nasty, and known to return without warning. Several of the drugs he's taking to fight the cancer can actually CAUSE other types of cancer. It seems like looking ahead based on MRI results like today's might be a little naive.

I know I've mentioned this issue here before in various ways, but it is a complicated one without easy answers. I welcome your opinions. We will certainly be seeking and welcoming guidance as we move into the end of treatment and the beginning of......

Stop the Insanity!

2007-07-20T17:56:00.000-04:00

We are delayed...AGAIN. Vampboy was supposed to start chemo on Tuesday, but was delayed because his immune counts (called "ANC") weren't high enough, and neither were his platelets. So, we go through the complex process of getting him, Vampmommy, and his cadre of drugs and other supplies into the car for a trip to Boston this morning, only to discover upon arriving that today's lab work shows his ANC is fine, but his platelets are too low -- the count being 72.

It needs to be 75 to start. 3 points off, and we're now in a holding pattern until Monday. That is, provided that his ANC doesn't drop below 1000, which it could. If that happens...Tuesday? Wednesday? Of course, that also means that the calendar pushes forward, so our end date now looms a week longer away.

To add to the angst this causes is the fact that we are now on "bonus time". Had there been no delays, and no additional chemo that came with radiation, we'd be done this week. That was never going to happen, as that's now how chemo works, but it adds just enough salt to the soul's wound to sting.

On the bright side, I'm hoping I can carve out a little date-time with VM this weekend, since VB will be in good health and able to hang out with a loving family member for awhile. We'll squeeze some lemonade from this rotten lemon yet!

The Long Way Down

2007-07-16T20:30:00.000-04:00

Hey -- remember me? I think I used to blog here or something. Let's play catch-up.

The Pain that I'm Used To
The MICKEY button issue seems to be resolved, after a few days of extreme pain ("Mickey hurt my tummy" became the big catch phrase) and a fever send VB back into the hospital, where he remained for several days. This time, however, the various teams and departments followed our rather angry feedback from the previous visit -- which showed in their clear communication amongst themselves and their overly-routine check-ins on Vampboy. In the end, the combination of VB having a weak immune system and the rather unpleasant procedure that but the button back in place conspired to bring us back to the "frequent flyer" level at Chez Healing.

On and On
I have come to the conclusion that the last 4 cycles of this treatment regimen are cancer's last-ditch effort to mess with our heads. Between this past cycle, which saw way too much time in the hospital, and the fact that we're delayed from starting the next cycle until the end of this week (if we're lucky) life returned to a level of testing both our patience and our mental and emotional strength. Granted, Vampboy looks great and is in equally good spirits, but after so long it doesn't take much to wear one down.

9 to 5
Through this whole ordeal I've continued to work. Being a working parent is always hard, but to be one while your child is sick and your spouse has given up their job to care for him, brings a special level of challenge. When I returned to work after Vamboy's surgery and diagnosis, one of the first things I did was remove photos of VB from my office. There was no way I'd be able to concentrate otherwise. I did keep one -- his school photo, taken a few months before he was diagnosed. It's not in a place I can see directly while sitting at my computer, so I decided to leave it. The longest I've been able to look at it is 10 seconds (and yes, I did time myself once).

Days packed with meetings are the easiest, as other people and active conversation make for good distraction. However, days spent in front of the computer, whether writing grants, answering email, or completing reports, are the hardest to stay focused for. Summer usually brings more days like that, and this one is no exception. I wonder if these days will get easier when we return to a more "normal" life.

Back to the Start
Vampmommy met with VB's daycare to arrange for -- who would have believed - his return to school sometime in November. Next week we'll meet with VB's doctors (after the next all-important MRI) to talk about what the end actually looks like: how long do the ports stay in, and when can we get rid of this DAMN MICKEY BUTTON ?!?! Dare I think that the end of this dark time may be near?

That should feed your need for knowledge -- I promise I'll be back sooner!

The Ripley in Us

2007-07-03T21:19:00.000-04:00

Parents are meant to protect their children. Many discover this drive early in their parenting, which leads them to do things that once they never thought they could do. If you're naturally the kind of person who can claw the eyes out of someone who crosses you, then this instinct is easy to handle. On the other hand, if you're like me (i.e.: someone who would eat a meal served to him at a restaurant, even if it's not what you ordered, just to prevent causing a stir) this can prove an uncomfortable and challenging role.

That's why I'm lucky to have Vampmommy. Not that she enjoys opening up a can of parental whoop-ass, but when you're dealing with the complexities and idiocies of the medical establishment, this skill is a vital tool -- as the past two days has shown.

Really, the whole mess of getting VB's MICKEY button replaced boiled down to two hospital departments that made decisions based on information they didn't have (they hadn't even seen my son), and never communicated with one another on the nature of the procedure that needed to be done to fix the problem. In the end, 24 hours was wasted sitting around watching Vampboy not eat, while Vampmommy had to use her limited emotional resources to set everyone straight and keep people doing the jobs they should have done all along.

In a metaphorical sense, it looked something like this:

Yes, every parent reaches a place where they must done a one-ton robotic lift suit and pound evil into oblivion. When you're finished, you are satisfied that you did your duty as a parent. It doesn't feel good necessarily, but it comes with the territory.

And Vampboy? In this case, we got what we needed, and VB is now at home with a slightly sore tummy, but a brand new MICKEY. Meanwhile, patient services will be in touch with a few key people to ensure the tomfoolery of the past 48 hours doesn't happen again.

Sunday Icky Sunday

2007-07-02T00:22:00.000-04:00

Sunday's are the day reserved for errands and catch-up at the Vamp-lair. VM took the day off to be creative and recharge, so after some time at the gym this morning I took Vampboy around town to shop for food and other such delights.

He was a bit whiny for most of it, but when we returned home he seemed to perk up and turn into his playful self. He was particularly smitten with the family of Morning Doves that has nested in a potted plant outside on our bedroom deck. Tonight, the parent birds flew away long enough for us to spy two babies sitting quietly in the nest. Since we could see them from the bed, we climbed up into bed as a family, watched the momma bird (or was it daddy?) return, and sang Vampboy's greatest hit, "3 little monkeys".

Then, as Vampmommy was sitting up to take VB into her arms, I saw it lying innocently on the bed:

Vampboy's MICKEY Button.

There was a brief moment of surprise and panic - after all, while we knew this little device was replaced every so often, this seemed a little too soon and too sudden. Since it's supposed to be like changing an earring, replacement seemed simple enough. But, since we had never done it before, we took VB to our local ER to get a tutorial....

...A tutorial from HELL, that is. You see, much like an earring hole, the opening the MICKEY fits in will close up if left open for awhile. In most cases (at least by what we're told), it's 6 hours before you'd have a problem getting a new button in. Of course, we're not most people - and karma obviously isn't finished screwing with our heads. The simple demonstration turned into an hour and a half of screaming , as the doctor tried in vain to get a new button in. He never succeeded, so after consulting with our usual team of medical misfits, as I type Vampmommy is making a midnight ride to Chez Healing.

It looks as though Vampboy's stoma (that's the not-so-fancy term for the hole the button went in ) started to close up almost immediately. To fix it, they'll most likely have to put a PEG back in (that is the tube he used to have before, that we had to tape to his stomach to keep from dragging on the ground), and then assess when and if a button makes sense. This is all complicated by the fact that he is most likely in need of a platelet transfusion at this point, and is also reaching the place in his chemo cycle where he's an increased risk of infection.
So, I'm waiting for laundry to finish so I can pack up a bag of clothes and such to be brought down to Chez Healing tomorrow. More news as it develops.

And here I was thinking that I didn't have much to write about this past week. The last few hours certainly made up for that!

Troubles in the Rear View Mirror

2007-06-24T23:43:00.000-04:00

5 more -- that's all of the chemo cycles VB has in front of him, with #5 in the countdown starting on Tuesday. So many behind, so few ahead; the horizon seems to get brighter with each passing day.

The downside is that it brings out my impatience -- for I do not do well with transition. I fight hard not to read the last page of a book first, and as I near the end I find myself skipping words to get there faster. Just be done already, dammit!

I am trying not to let that part of me come out right now. There is still much work to be done. But talking about a normal life is incredibly addictive, particularly when you don't have one.

1 AD

2007-06-17T20:22:00.000-04:00

BC = Before Cancer

AD= After Diagnosis

6:30am Father's Day - June, 2006 BC

It was the cry through the baby monitor that hurled me out of bed. Although Vampboy had been struggling with a tummy bug and other ickiness the week prior, it seemed routine for a kid in day care, ever-exposed to fellow baby-snot.

But the sound that morning...To this day I can't describe it in words, but I will hear it in my head for the rest of my life. It just sounded wrong, so I made my way down the hall and opened the door.....

6:30am Father's Day - June 2007 AD

On Friday, fever once again landed us in Chez Healing. Although not serious, every fever is treated as such, so we've spent quite a few nights in the ER with them the past couple of weeks. With an immune system reduced to nothing, the one Vampboy had on Friday also meant it was time for admission, leaving me contemplating spending another Father's Day in the hospital.

I awoke this morning after a night of surprisingly good sleep, given our surroundings. Vampmommy came down for the night so we could be together on this anniversary, and since she slept with Vampboy I got the pull-out chair some distance away from the overnight drama of blood transfusions and low blood pressure readings.

She appears from behind the hospital curtain to tell me that VB has been asking to cuddle with me, so I pull myself up from the chair, stumble blindly over to the crib, and fall in next to him. He immediately wraps his arms around mine and buries his head in my chest. In a few moments he will open his eyes and begin talking to me about his dreams, and asking for the nurse (who's name he says to her with a huge smile on his face shortly thereafter).

I have dreaded this day, as I was completely unaware how I would react. I thought at first that I wouldn't want to even recognize Father's Day, instead choosing to huddle in a corner and weep. But then it got closer, and we began to make plans -- although most of them were called off after Chez Healing came a-callin'.

Now, here I am, staring up at the ceiling as the moment happens, and we pass the milestone of a year in the trenches of battle. Rather than the tears, grief and anger I expected to pour out of me in some cathartic nuclear meltdown, only one thought came to mind. It was from the Thursday after Father's Day, when the oncologist came by our room to tell us that the pathology being done on VB's tumor didn't look promising, and that we were most likely looking at "the C camp". Looking for a way to make this real to us, my wife had asked, even though we didn't know exactly what we were dealing with, if he could give us a ballpark on survival rates of pediatric brain tumors.

His answer was the bitch-slap we needed to comprehend the beginnings of our journey: "Oh, about 40%". As the tears began and the conversation ended, I clearly remember my wife pleading to me, "But, I love our little family. I love our life," even as we seemed to watch both evaporate before our eyes.

One year later, and countless horrors and moments of grief and rage and darkness, and all that resonates with me is the joy that we are still a family. We are still here. The future remains a permanent state of uncertainty, but on this Father's Day the greatest gift I've been given is the subtle joy of knowing that there is still a Vampfamily to write about.

I spend the rest of the day gliding along with this feeling as we chat with nurses and doctors, help our roommate get her daughter to the play room, clean said room (what is it people don't understand about putting toys AWAY after they've been played with?), and await lab work. When it comes, we celebrate again as we leave Chez Healing once more as a family intact, and return home to pick up on a Father's Day that almost wasn't...Almost.

So, happy Father's Day to all of my fellow dads and dad-bloggers, and thanks to each of you for joining us on the ride the past year. Here's to the chance that future Father's Days will be even better...

The Last Beat of my Heart

2007-06-05T21:04:00.001-04:00

We are at the ER, and once again the nurse comes in and pokes with a needle, drawing blood for yet more blood tests. We are hoping that this time it will tell us what we need to know.

Oh, did I mention that this blood draw was not for Vampboy? Nope -- it was for me.

Friday was a relatively "normal" day. Vampboy was delayed in his treatment, which meant that a weekend of shuttling back and forth to Boston was put off (good news), but the delay meant adding another week to the treatment calendar (bad news). I was enjoying a day at my office, trying in vain to get ahead of the seeming endless pile of paperwork, good ideas and "to-dos". I was in the process of creating the 4th draft of an agenda for an upcoming training, when I noticed a slight pain in my chest. Having asthma, it's not unusual for me to feel some tightness now and again, so I didn't think much of it at first.

In fact, I continued on with my routine, which included a trip to the gym for a little cardio workout. The pain came and went, never getting worse, for the next half and hour. When it continued to stick around, I decided it was time to get it checked -- after all, I have a family history of high cholesterol and cadiac issues (thanks, dad!). A quick call to the on-call nurse, and shortly after Vampmommy was taking me in for what became my first stay in a hospital as a patient since my own birth.

I hadn't even been moved from the ER to the floor before the pain suddenly stopped. Various blood draws and some time running up a treadmill under doctor supervision later, it was determined that whatever it was, a cardiac incident it was not.

Perhaps stress? Thai food I had for lunch? Either way, it was nice to know that it wasn't "the big one", and I was discharged Saturday morning with enough time to join Vampboy at his friend's birthday party (complete with adult-size bouncy house). I'll be visiting my doctor shortly to follow up, but a few days out and all is back to "normal" -- including Vampboy starting his next chemo round yesterday.

Perhaps I wasn't clear to the cosmos when Vampboy first got sick -- no one is aloud to get sick or die while Vampboy is in treatment. That includes me.

Am I clear?

The Lengths We Go

2007-05-29T18:56:00.000-04:00

Blogger's Note: Before I go further on this, let me say that my own political views on the current administration are not a part of this post, as I am uninterested in entering that blogosphere. However, I am writing about something on my mind that is of a political nature -- and I hope you'll pass over that in appreciation of the larger message. There are plenty of folks who fill cyberspace with their thoughts on Iraq, etc. For now, I'm content filling it with poopy diapers, chemotherapy humor and the occasional smart-ass remark. - VD

In an open letter on her blog on Memorial Day, anti-war protester Cindy Sheehan announced her retirement from protesting the Iraq War. While her choice to step back is wrought with her own political opinions on the state of our country, I have been thinking a great deal about her decision as a parent to retire from work she has dedicated her life to on behalf of her now deceased son.

Whether you love her or hate her for the stance she's taken on the war, at the end of the day this was a parent who was trying to do her best for her children. Whether or not she succeeded, or even if it was the right thing to do, is something she can only know in her heart. However, her decision to step back and focus on her family, her health, and other ways to remember her son, leave me thinking about my own experience on two fronts.

First, I am the parent of a child who could lose his life to Cancer. I wear my required yellow wrist band, and we now shuttle off to various events to raise awareness or funds for cancer treatment and research. But, how much of myself should/can/will I dedicate to the "cancer cause"? In choosing to become a "voice to the experience", one commits to a deeper, long-term relationship with whatever unpleasantness you're against.

Of course, it's easy to dedicate yourself to a cause if you're not already dedicated to others, which is my second issue. Today I spoke with a colleague in my field who is tired. I speak to a lot of folks in my field that are tired. Non-profit, social-justice activities are a drain on the mind and spirit -- particularly in a country that has abdicated most of it's social service responsibility to the non-profit sector without matching that direction with funds to sustain anything meaningful in the long term (wait, was that political? There I go....). People with passion for their cause, with creativity and talent, so often retreat in some combination of disgust, sadness and burnout from the work and, like Cindy references in her blog, feeling like they've failed.

I too am tired, as I've stated before. Granted, I've got other reasons to be wiped out emotionally, but I just wonder how far I'll be willing to go (or continue to go) to make the world a better place -- before I throw my hands in the air and say, "fuck it -- I'm going to work for Starbucks".

As parents, we say we'd do anything for our children. But at what cost? And what's the limit?

Best Week of the Week

2007-05-25T21:45:00.000-04:00

Well, Vampboy and I made it back from Chez Healing last night. Although it had the usual challenges, I have to say that life in the hospital is a different beast during the week than on the weekend, when I'm usually on duty.

For starters, the hospital is a noisier place during the week. Every bed has a patient in it, and Residents run around diligently after their respective Attendings and Fellows. The play room is staffed with Child Life Specialists, giving Vampboy ample opportunity to search for them through the halls. At one point members of the New England Revolution (league soccer team) came to visit, and all VB could do was try to coax the Specialist back to the play room with him.

Then their are those who VB truly considers to be Gods and Goddesses among us: the cleaning crew. Given my son's propensity for ceaseless vacuuming and sweeping, he spent countless hours watching with glee as the floors were buffed and trashcans were emptied. His favorite is a lovely women who always turns their encounter into a laugh-fest, speaking in a high pitched voice while dancing around the hallway, flapping rubber gloves and smocks in the air.

Lastly, there was the "snack train", which wheeled through the halls bringing patients -- and their parents -- a choice of cheesecake brownies or fruit and cheese.

What luxury! On the weekends, you're luck to get an ice cream cup from the patient and family kitchen. The play room is available but unstaffed, so it's a bit more quiet. All in all, I'd rather be there during the week than on the weekend -- but hopeful that soon we won't need to be there at all.

Steady Off

2007-05-22T22:25:00.000-04:00

Well, how quickly things change.

For the first time in months, Vampboy is in the hospital with an infection. This followed two days of challenging blood product transfusions, and a bleeding episode that left him looking as though he'd been shot in the chest. On top of this, VB has been indicating that his tummy hurts since yesterday, and by today it was clear that the area around his Mic-key button was infected. This is a common thing, sadly -- in fact, he had a similar reaction when his initial tube was put in back in October. Unfortunately, because it's happening while his immune counts are low, it's back to Chez Healing for a few days.

Complicating things this time around is that Vampmommy has a cold -- so the hospital is the last place that she should be. So, after some schedule wrangling and work off-loading, here I am.

Peachy. September (or October...Or....) won't come soon enough.

Steady On

2007-05-21T06:49:00.000-04:00

I wish I could say that my lack of a post in many days is a result of a life unaffected by "stuff". Really, all I want is for the day to come where someone says, "Hey, have you heard from Vampdaddy lately?" To which the responder says, "Yeah...But not much is going on in his world."

Ah, dare to dream. In the meantime....

So...Buttons
The button is in, and it doesn't look at all like a mouse. It looks more like this:

The top part is what sits on Vampboy's tummy -- while the long tube with the balloon in it is the internal part. There is a separate tube that locks into the button when it's time to use, and I have to say it's a great thing to see him running around without a long chord permanently wrapped and taped around his stomach.

Mama.
Mother's day has come and gone, without me giving a shout to the mommy-bloggers who have been added to my blogging world. Here at the lair, Mother's Day was spent in the hospital for the next Chemo Round, and I was without a computer for most of it. To pass the time, Vampboy and I made it a project to decorate the room with streamers and signs, and Vampmommy came back to Chez Healing on Sunday for a family party. Once again the unpleasantness of the hospital environment was forgotten, thanks to good company and a healthy dose of dinner from the Cheesecake Factory (apparently they make more than cheesecake).

Oh, and if anyone thinks otherwise, yes -- my son does have the best mom on the planet.

The Dolls
Vampmommy and I were never interested in applying to our child the typical stereotypes and straightjackets of gender. Even though VM was convinced we'd have a boy, we didn't know for sure until he entered the world with a scream (both hers and his). This left us with a cache of gender neutral clothing and toys, and we made a pact not to participate in the typical expectations of boyhood (no sports-related clothing, etc). Of course, our son grew to love trains and trucks anyway - but that has been balanced now with a baby doll. He found it in the playroom at Chez Healing and became completely enamored with it. For two days he'd carry it around with him, and even refused to go to bed unless he could sleep with it. In the morning, he'd change it's diaper and clothes, and tried to convince it that Chex really were worth eating.

After realizing that we'd be facing a major traumatic incident when it came time to put the doll back in the playroom, I had VM bring a new doll with her when she returned to the hospital. Baby wears a yellow and duck-print pajama set, with matching booties and hat. Vampboy continues to be smitten by his little offspring, and starts each morning by asking to locate "baby". We aren't sure whether it's a boy or a girl, but I'm not sure that really matters.

"I uv u"
Vampboy said those words to me, without my prompting, about a week ago. It's one thing to love your child, but it's something else entirely when they actively reciprocate. Tremendous.

Time -- It's all a Question of Time
It seems, after sitting down with a calendar and the treatment protocol, that as of now we are actually scheduled to end treatment in September. Granted, delays are still possible, but seeing the end on the horizon is hard to believe -- like much of this experience, I suppose.

Biking Home
A relative of ours (my brother-in-law's wife's father...Got that?) is riding in the Pan Mass Challenge. This is a 100+ mile bike ride that raises funds for Dana Farber Cancer Institute, where Vampboy is being treated. Our little one has been selected as a "pedal partner" for my relative's team. We got to meet the entire team a couple of weeks ago, and they presented him with this toy ramp that he is absolutely obsessed with.

My relative and his fellow riders are hoping to raise over $6,000 for Dana Farber. If you'd like to contribute, you can click here. Pick any of the "One rider" options (the donation is made through the team captain).

Treasure Hunt
I've had several folks comment that they can't find us on the Cancer Collage. Trust me, we're there! In fact, I just checked it, and on my browser at least our photo and card is on the main page when it's opened. Just search for "Vampdaddy" and look for the little illuminated photo. Good luck!

Sideshow

2007-05-07T13:03:00.000-04:00

"I like blue".

This was the first complete sentence spoken by Vampboy, which took place last week during some fierce artistic expression. This was followed a few days later by "I like bear", referring to any one of the arsenal of teddy bears he carries with him constantly. I'm not quite sure if he understood what he was saying, but he clearly got from our squeals of parental glee that he did something right.

We're waiting for today's lab results, which will give us a sense of whether or not this weekend will bring another stay in Chez Healing for chemotherapy. Although the idea of celebrating mother's day on "the floor" is a bit of a downer, the idea of a delay brings it's own frustration. Plus, this stay will introduce a new player in the treatment arsenal. Sing it with me, everyone:

M-I-C-K-E-Y

B-U-T-T-O-N!

Since November, Vampboy has had a tube sticking out of his stomach, through which medications (and more importantly, food) can travel. Looking back, we really credit the insertion of this for the bounce-back we've experienced from our days with him looking like a ghost. Sadly, we've also become big fans of the ease it brings to some of the typical headaches parents with toddlers deal with. Your child refusing to take tylenol? No worries -- just squirt it down the tube and you're done! The young one resisting eating his veggies? Forget about it -- a little liquid nutritional supliment down the tube and their daily requirement is met!

Before you rush to your pediatrician for the quick-fix, there are some draw-backs. Obviously, a tube hanging out of your child's stomach like a replacement umbilical chord can be a little tough to look at. Plus, it needs to be taped, tucked into clothing, and otherwise handled to ensure that it doesn't get "forcibly removed" by mistake. Trust me -- we almost had that happen once, and it's not something you'd want your child to go through.

Now comes the "Mickey Button". After a few months with the tube, it's replaced with a button that sits flat against the child's stomach. No more tube to manage. This leaves me looking forward to this weekend, yet at the same time remembering how sad it is that I am looking forward to something like this.

In other news, last night the Discovery Channel had a special on cancer. As part of the documentary, a " Cancer Collage" has been developed on-line to bring attention to the disease. You can find it here, and if you do a search for "Vampdaddy" and scan around you'll find a card about us -- along with some photos of Vampboy and I. While you're there, take a look around -- sadly, you might see someone else you know.

I Will...

2007-05-02T22:31:00.000-04:00

Vampboy is mid-way through his current cycle, and although it's been a bit harder than the previous ones (with some slight nausea early on and more blood and platelet transfusions) he seems to be holding his own. I still can't believe how radically different it is from the constant barrage of misery that was in earlier cycles.

The lack of daily drama has given me more time to think, and lately I have been thinking of "survivorship". This is the term coined for the growing ranks of cancer patients who actually make it -- as cancer survival rates increase, the "establishment" has begun to focus attention beyond the treatment. Cancers that were once a death sentence are now considered "chronic diseases to be managed", much like HIV (for those lucky enough to have access to medical care and affordable drugs, anyway).

Of course, Vampboy's cancer does not fall in the "chronic" category. AT/RT is still one of those cancer's that kills people. Yet, as we are well on our way with maintenance chemotherapy, his tolerance of the treatment has given us a chance to consider that he may (and I stress, may) live to be 100. Or, he may only live to be 10 -- but either way, he could very well make it beyond the end of treatment; and that end is on the horizon.

Don't get me wrong -- I still contain uncontrollable rage at the life we lost, past and future. However, when you lose everything, the clean slate that is left provides a unique opportunity to start again. Many cancer patients make course corrections as part of the "new normal". Perhaps they change jobs, move, or re-prioritize other activities and relationships in their lives. Toddlers don't have complex realities that offer that kind of opportunity, but certainly Vampmommy and I have begun thinking about it. In our case, "survivorship" is a family issue. What kind of a family do we want to be? Should Vampmommy go back to work when this is over? Should we adopt like we planned before Vampboy got sick, or just expand our ranks with additional pets? And, whatever choices we make, how much do we consider Vampboy's cancer (and its potential return) in making them?

In the immediate moment, Vampboy's reactions to his current treatments also allow for Vampmommy and I to turn some attention to our own self-care. Parents everywhere tend to struggle with this part, but when you're the caregiver of a child who has additional needs the very thought of keeping yourself healthy tends to get thrown out the window. So we're eating better, trying to exercise, and working to stave off the effects of six months of comfort and hospital food.

Hell has become a bit more comfortable. The storm around us has slowed, and I hear for the first time a little quiet, and open space to let the possibility of a future in.

Is That all There Is?

2007-04-25T21:10:00.000-04:00

Vampboy's MRI scans came back with "no evidence of disease" yesterday. So, for today, we can rest a bit easier knowing that we've bitch-slapped cancer into the corner.

Sadly it is short-lived, as we know that the fact there is a corner that cancer can run to means we aren't out of the woods yet. The question is -- will we ever be? One of the first patients with AT/RT treated with this protocal has died, after relapsing 5 years after treatment. While others have survived beyond that, there aren't enough to capture the "survival rate". One cancer cell is all it takes to go from a cure to "buying time before the inevitable".

Time is the big question -- but we were given a little more today. We'll take it.

Digging in the Dirt

2007-04-22T18:05:00.000-04:00

Spring has finally sprung here at the Vamphouse -- a refreshing change after two April snow storms and the "Great April Floods" that seems have become a staple of life in this part of the world. The last remnants of snow have vanished, and Vampboy's snowsuit has been replaced near the door by a beach shovel, bucket and plastic rake, which he just picked up to take outside. A future landscape architect, no doubt.

Vampboy has started his week 30 chemotherapy, and the good news is that the nature of the treatment this time made it such that we could do it outpatient as opposed to staying in Chez Healing for four or five days. While the idea of spending each night in our own bed has made the experience worthwhile, the daily tribs into Boston for treatment have made for some long days. While in Chez Healing today, we had the benefit of visiting with Othergirl, who was in for her week 33 treatment, and Princess, who was in with pneumonia (but feeling better by the time we got there). This was the first time that all three were in the hospital at the same time in months, and even though our visit was only a couple of hours long it was great to watch the three interact with one another. At one point, Vampboy proudly lead the three of them (and the respective parents) around the floor in a parade, wildly waving a sparkly baton and laughing. A little "Cancer Pride Parade".

This will be a big week, because apart from the chemotherapy treatment it's MRI time again. While even the doctor's don't expect to see anything, the nastiness that is AT/RT keeps everyone on their toes and concerned as the MRI approaches. On top of that, we are far enough out from radiation therapy that Vampboy will have his final hearing test, so we can get a sense of how much hearing loss we'll be dealing with. When interacting with him we don't notice much, but in his speech patterns he's clearly missing his "s" and "f", which are higher frequency letters to pronounce. The test should give us a pretty clear indicator of what the damage will mean, and how soon he'll need a hearing aide (we're pretty sure one is definitely in order for his right ear at some point).

Then on Wednesday we visit "Brain Tumor Clinic". This is a new part of our routine -- a one day extravaganza starring all of the kids treated for brain tumors (past and present) as well as the team of specialists that work with them. This is the place Vampboy will go for follow-up appointments once his treatment ends, but having never been before we're going to get a taste of it this week.

I remember when "big weeks" involved vacations, or something fun. Ah, the good old days....

Before I sign off to check that Vampboy hasn't dug a hole in the garden, I did want to post a special thanks to the folks that came out to the fundraiser that was held this afternoon on Vampboy's behalf. He was perky enough after his treatment that we got to stop by, and I think he was quite taken with the live music and space to run around in. Friends and total strangers came out, and we are once again amazed at people's caring.

Update -- some kind and wonderful folks out there have emailed me since last night about how they can contribute to the fundraiser. Being the recipient of such generosity is an odd experience, hence I rarely mention it here. However, to honor peoples' wish to help out, I will say that there remains a fund that was created to support expenses related to Vampboy's treatment. To get information on how you can donate, please email jackiecdp@aol.com with "Vampboy Fund" in the subject line.

The Brotherhood of Man

2007-04-17T22:47:00.000-04:00

I am tired of so much these days: tired of cancer, tired of financial woes, tired of war, tired of the ceaseless barrage of misery that parades across the news reel, tired of politics and drama getting in the way of common sense and doing the right thing. Yesterday, while a gunman was shooting up Virginia Tech, I was working on a grant to help the non-profit I run work to prevent youth violence in my community. Which reminds me, I'm also tired of writing grants.

But seemingly within moments, with a big smile and squinty eyes, Vampboy runs to me in the grocery store as I meet up with him and Vampmommy for some food shopping. He grips my hand and runs down the isle, determine to show me the "LOB - TERS" that crawl around the tank. He couldn't be prouder as he points them out to me, repeating their name again, over and over.

Another day of brilliant discovery.

In his eyes, the world is still magical and wonderful.

If only more people saw it that way.

Sometimes it Snows in April

2007-04-13T10:20:00.000-04:00

Further Nearer from the Start
This weekend, Chez Healing is taking 50 families to a ski resort, free of charge - an attempt to provide those of us living in C-Camp with some semblance of a vacation. Of course, life in C-Camp doesn't always work out to benefit from such generosity, as is our case. Vampboy's immune counts are too low for us to go, as the thought of him developing a fever and being in a rural hospital three hours from Chez Healing is a risk we can't take. Of course, we know this in our heads, but are hearts once again sink with the frustration and disappointment that comes with not being able to lead a "normal" life. On the flip side, Vampmommy and I will use the time to do some spring cleaning around the house, and hopefully send Vampboy off with a grandparent for a little while so we can have a date.

"You like me -- you really really like me!"
I channelled Sally Field this week when I discovered I've been tagged with a meme by Denver Dad. For those not in the blogging-know, a "meme" is a get-to-know-you question that is passed from blogger to blogger. My fellow father-blogger has tagged me to name my three favorite songs. Over the passed few days, I've moved from incredible honor at being asked, to a level of hysterical anxiety in which I need to come up with an answer before my head explodes.

Damn you, Denver Dad! Those who know me know that this question is impossible to answer -- for my music collection is vast, my tastes varied, and my passion for a good tune is practically unmatched. So how do I do this? Should I go for the three all-time favorites, or faves of the moment? Should I go with the three that have the most personal meaning, or the three that amuse me? Perhaps I should go with tried and true answers that my friends will not be surprised by -- or perhaps I should pick something obscure to everyone in an attempt to raise my "cool-music quotient". Perhaps I should list three tacky songs in protest of the idea of having three favorites -- Cybill Shepherd, anyone?

Well, because I can't expend more of my dwindling synapses on the existential implications of my choices, here are three that come to mind right now. Note that they will probably change in five minutes:

Bjork - "All is Full of Love" . The day that Vampboy was being taken into surgery to have his tumor removed, I sang this song in his ear as I walked him to the operating theatre. Simple yet beautiful. I think I'll have it played at my funeral.

Cocteau Twins - "Wolf in the Breast". During Christmas break while a freshmen in college, I spent two weeks huddled in my bedroom, listening to the album Heaven or Las Vegas, reading Ann Rice's Vampire Chronicles - and the "Vamp" in "Vampdaddy" was born. This song stayed in my head for quite some time afterwards, and when I listen to it now it sounds like home.

Depeche Mode - "It Doesn't Matter". This was a bit of a courting song between Vampmommy and I. A little strange if you know the song, but that speaks to our history. We both smile when we hear it these days.

There -- I can now return to normal functioning. Of course, the other element to the tagging is that I need to pass the meme on to three other bloggers. I'm still a bit new in reaching out to my fellow-writers, but I'll throw this one out to Metrodad (although he's probably received this a thousand times now), Crankmama (probably the same) and Papa Bradstein .

Bonus Track
Amanda Palmer is a freakin' genius.

Who is she, you might ask? She's one half of the Dresden Dolls, a punk-cabaret band out of Boston. They are in heavy rotation on my end for a few reasons. First off, the other half of the group, Brian, is from New Hampshire. This proves once again that cool, talented artists do come from the Granite State (we're not as backwards as you think!). Second, the college-era me would find Amanda wildly fascinating, and if she was around when I was in college I would join her in wearing white-face and doing improvisational movement theatre right in the Harvard Square Pit.

Today my appreciation of them has gone to a new level, thanks to the video below. Not only is this a phenomenal display of surreal talent that is completely up my ally, but the song speaks exactly to the underlying frustration and ennui Vampmommy and I experience living in C-Camp these days. It made me feel better about our weekend getaway that now isn't, and I'm sure it will put a smile on Vampmommy's face. So, if you have a few extra minutes, check this out. And remember -- I'd be the man with the chicken.

The Weekend at War

2007-04-02T20:02:00.000-04:00

Friday
I have finally caught the cold that has been traveling around my co-workers and spouse with a speed that would excite any epidemiologist. I wake up Friday morning feeling as though I've been hit by a truck, then run over repeatedly while clowns tap me on the side of the head with hammers. I also feel mentally out of sorts -- the perfect reason to envision said clowns in the first place.

This ickiness will not stop my inevitable stint on hospital duty. Vampbaby's counts are high enough that, as long as I don't sneeze on him and continue to Purell my hands like someone with OCD, he should be fine. Never mind that, usually by the time a cold manifests itself, you've already passed it along the sniffle chain to someone new. I take the morning off to sleep, lying in a stupor until about 10:30am. I slowly rise and make myself look presentable for a short cameo at work, then finish packing my belongings for the trip to hospital.

I head to work, and once again the clowns are preventing me from focusing on a meeting that I should probably pay more attention to. I make my way through and quickly leave the office, before scores of emails and phone messages threaten to suck me in.

The trip into Boston on these days is always a bit of a downer. Sure, spending a weekend in the hospital is an obvious reason to be blue, but I tend to get overly in-touch with my emotions when I'm sick. Perhaps it's that -- or, perhaps like a fool the only things I have in my cd player are thoughtful and sometimes depressing pinings of Tori Amos, Innocence Mission, Denison Witmer and Shawn Colvin. Either way, I am trying to keep myself as upbeat as possible. The emerging view of the Boston skyline helps somewhat. Having lived there for 10 years, my wife and I still consider Boston our true home, even though we now live back in the burbs from which we came. Sometimes I wonder if the essence of Boston isn't somehow just what we need to get through this.

The hospital greets me with the familiar sound of the metal clanging of the sculpture in the lobby that is equipped with wooden balls that bounce through a maze of tracks and platforms, and the smell of the Au Bon Pain which serves as the only non-hospital cafeteria food option in the complex. While I lived on "the pain" on many a day through college, I am quite convinced that when this experience ends, I will NEVER set foot in an Au Bon Pain again.

I drag my suitcase and Vampboy's plastic car to the elevator and make my way to the floor. Unlike earlier in treatment, I am not greeted with a son who looks like, well, death. On this night, Vampboy is playing and happily babbling, looking full of life while three thin plastic tubes run from the port in his chest to the pumps, which quietly whirl and click as they administer chemotherapy. I inhale some dinner and unpack, while Vampmommy gives me the update and Vampboy takes a stroll around the floor in his car, pushed by his grandmother. There will be many other drives over the next two days.

I complete my transition from "Workingman" to "Cancerdad", all the while wondering if I'll be able to function through the cloud of snot and haze in my head. Vampboy and I fight over going to sleep. I win, but not until almost 10pm.

Saturday
When you're a frequent guest at Chez Healing, the inconsistencies and poor management that is the nation's health care system come into focus. For one thing, this hospital treats lots (and I mean, LOTS) of kids with Cancer. So, knowing what the treatment is often like, you'd think that they'd have the right quantity of proper equipment to address the need.

You'd think - but of course you'd be wrong. In our case, the holy grail of chemo tools is the "Triad". This is a single machine that can infuse multiple drugs at once. Vampboy's chemo cycle this weekend requires he receive three drugs at once -- Doxyrubicin, Cyclophosphamide and Fluids. However, there is no Triad to be found anywhere in the vast expanse of the hospital. This leaves Vampboy's nurses to gerry-rig three individual infusion machines to one IV pole. The single infusers have weaker batteries as well -- so on top of being a cumbersome burden for the parent of a young child who demands mobility, freedom is limited between the "low battery" warning that beeps with almost nightmarish regularity.

Vampboy and I deal with this lack of capacity as best we can, and I take every moment he is still to plug the machines into any outlet I can find. Vampboy helps at one point by becoming obsessed with the play kitchen in the floor's rec room. For an hour and a half he fries a bagel in a pan, runs it under water, then places the bagel and pan in both the microwave and oven before returning it to the cabinet. Then the cycle repeats. It won't be until Sunday morning that he realizes he should try to eat it -- which isn't really productive, as he discovers he's not crazy about the taste of plastic. He makes me eat it instead.

Sunday
There is little action on the floor on the weekends -- the play room isn't staffed, so we're in there for the most part alone. The rest of the floor, used largely with patients with neurological issues, is pretty empty on this weekend. Vampboy and I spend a lot of time wandering the halls with him in his little car. He sits quite contently, looking about and grinning at the nurses and other hospital personalities who coo and "awe" at his cuteness.

When Vampboy is receiving his chemotherapy, he's not allowed to leave the floor. During this cycle, it means three days without exposure to anything remotely resembling the outside world -- the world literally stops at the elevator. To mix things up, I alter our car's direction through the halls of the floor, weaving into some areas we had not traveled yet. It is a chance to quietly observe a world that few parents -- thank god -- ever get to see. Since other wings of the floor deal with a variety of issues, you see the true scope of what it means to have a sick child:

*In one room there's a teenage boy, with an ice pack on his shoulder. I never see any visitors in my multiple trips past his room -- no parents, no friends. However, he seems like he's in heaven, looking happy and relaxed as he skims an issue of Men's Health and watches TV.
*There are babies -- many, many babies. some are sleeping under plastic mini-tents which provide oxygen, while others just sleep (or cry) in the hospital cribs. Some have parents by their bedside, but some don't. I wonder what on earth those parents are doing instead of being near their child. I hope that it's only a moment of self-care in the face of stressful caregiving. The other alternative seems impossible for me to conceive of.
*We pass by several kids who's bodies are contorted in their beds -- perhaps MS? Who knows, but there's one wing that seems like it's occupied by kids who probably live there more than at home. Windows in the rooms are painted with "Go Red Sox", the kids names, or animals of some sort.
*We walk passed one room where a teenager is having a nervous breakdown, demanding to be immediately discharged from "this hell-hole". Of course I have no idea what's going on with him, but he doesn't seem as physically bad off as kids in rooms on either side of him. I wonder if he's taken a look around.

Vampmommy makes her way back to us in the afternoon, and we switch off once again. She and Vampboy walk me to the elevator as I update her on his chemo regimen and the plans to finish up treatment and get them back home Monday night (yes, tonight). At the elevator I am sent off with a hug and a very boisterous "BYE" from Vampboy as he wheels off for another automotive jaunt around the floor. This leaving is not as difficult as in the past, where his screams and reaching for me broke my heart and my spirit. Perhaps, I think as I leave, he will continue to tolerate his treatments as well as he had these last few. Perhaps those days of him looking like the end was near are behind us.

I re-enter the outside world, feeling a little better about the weekend that was. And, for the moment, the clowns have stopped hitting me in the head. I hope they don't come back.

The Elephant

2007-03-29T16:10:00.000-04:00

Well, Vampboys ANC shot up to normal practically overnight early in the week -- enough for him to start treatment on Tuesday. Sadly, not expecting this to happen, he received his "G" shot on Monday (which, turns out, he didn't really need). This delayed him until Friday, because you can't start chemotherapy until 48 hours after your last shot. Scrubs said Vampboy was "f$%^ing with her". Perhaps -- needless to say, Vampboy's playmates should be on notice now that the first weekend in June, 2018, Vampboy is grounded.

This delay also means that "hospital duty" falls to me for the first half of his stay, as I do weekend duty so Vampmommy can have some time to unwind. Emotionally gearing up for another round in the hospital is no fun -- particularly since the schedule has been such that this will be my first stint in Chez Healing since November. Grudginly, I am beginning to prepare for the transition.

I have been thinking a bit about transition this week, as I continue to navigate operating in two worlds. My first world is the "normal" one, where I go to work every day, and enjoy usual "dad things" like play time and bath time. Where I read and follow parenting blogs, websites and magazines that tackle the joyfully routine topics of toilet training, and ensuring that your child's food ends up going from plate-to-mouth, instead of plate-to-table-to-dog's-mouth.

Then there's "C-Camp", where you inject medicine through a tube in your son's stomach, and try to translate his current condition into something that someone not in C-Camp can understand. This week has brought many to at least take a brief tour of C-Camp, after two prominent people were splashed across the news for their cancer story. First there was Elizabeth Edwards, whose breast cancer has returned and spread to her rib. Then White House Speaker Tony Snow announced the return of his colon cancer, setting off a great deal of media attention on the disease.

In the sea of blogs, articles and opinions on the issue, one that stood out to me was by Leroy Seivers, a reporter for National Public Radio who has been blogging about his own experience battling cancer. His response to Elizabeth Edwards announcement talked a great deal about "the elephant". You know, the one that is sitting in the living room, eating your cookies and tivo-ing over episodes of Grey's Anatomy with re-runs of Emergency Vets?

Yes, that elephant in all of our living rooms: death.

Edward's cancer is incurable, but treatable. While treatment can extend her life, the reality is that cancer will eventually take it. She knows this, but is unwilling to allow her cancer to define her. So, with this knowledge and her desire to be more than her disease, she and her husband bravely press on with his campaign. People have applauded her courage. Some have expressed surprise that they choose to continue in the political fray. Through it all they have been poised, and models of bravery in the face of disease. They have taken the elephant in their living room, and told it to eat some peanuts and take a hike.

All of us who are impacted by cancer need to deal at some point with the inevitable meaning as it relates to existance. While Vampboy is doing well, it is never far from my thoughts that his disease may take him -- maybe not today, but perhaps 5, 10 or 15 years from now. Or, maybe next week. Sure, there is a chance and a hope that it may not -- but do a google search on AT/RT and I'm sure it will only take a few links to connect you with the scenario most often faced by parents of kids with this form of cancer.

So, with that much unknown, how do you navigate "Normalland"? How do you move forward on your other goals and dreams in life, even in the face of an obstacle as big as this? And, how do you balance normal life with the desire to throw breakable things in anger at life in C-Camp?

I am amazed at the people I meet and read about, who faced their cancer and forced it into a corner. Those who refer to themselves as "Survivors", counting up the days from diagnosis, with every added second perceived as a victory. I'm just not there yet.

How much to you celebrate victory in battle, when the loss of the war is still at the table?

Calling Mulder and Scully

2007-03-24T20:45:00.000-04:00

Blood is a complicated thing. It carries more than oxygen -- white cells, red cells, platelets. And, when you apply the complex math of the medical world, something called "Absolute Neutrofil Count" or "ANC". This handy number is what determines whether or not Vampboy can play with his friends, or whether he needs to live in a figurative bubble to shield him from nasty bugs.

Normally, when a cancer patient receives chemotherapy, their ANC drops down into the depths. Then, with the help of a daily shot called GCSF, the count slowly rises back to normal.

Remember, I said "normally". For the second time in Vampboy's treatment, his ANC has dropped when it shouldn't -- at the end of his cycle, even when he's still taking his GCSF. To be clear, this isn't supposed to happen. So, we are once again scratching our heads saying, "what the hell". What doesn't help is that the Doctors tend to say the same thing on this one.

So Vampboy is delayed in his treatment while we wait for something to change, and his counts to rise again. I'm not sure how long that will take, but it'll probably be Friday at the earliest (he was supposed to start his next chemo round this past Friday). At least, we hope it will be Friday.

More mystery....

Vamp O'Daddy

2007-03-17T10:13:00.000-04:00

Happy St. Patrick's day, one and all! The Vampfamily is getting a little down time today, with Vampboy heading to the grandparent's, Vampmommy taking in a bit of quality time with a friend, and my plans to sit in Barnes and Noble and chew through a good book. I also plan to stop by my office for a bit, so I can watch the hordes of drunkards spill out onto the street from the local Irish-style pub that is across the way. Given that I do drug and alcohol prevention for work, it's helpful to witness first-hand the sad display of my job security.

No real news on the "Vampboy Cancer Front" -- we're in a holding pattern to start his next chemo round until his counts rise. We're hoping for next Friday, but that remains to be seen. It also does not help to have the local medical lab send incorrect lab results to Vampboy's doctors, which they did this week. While it's not amputating the wrong leg, it certainly could have put him at risk with his low immune system. We have seen any number examples of mistakes in Vampboy's care, but I'm fortunate to have a wife who hovers like a hawk over it's prey, ready to pounce on the first Resident that so much as blinks incorrectly.

So while we wait, Vampboy continues to obsessively clean the house with his toy vacuum and broom. While I know he will have any number of issues related to his cancer as he grows, I am now wondering if we have a little OCD patient on our hands. Fortunately, his need to keep things tidy doesn't translate to putting his toys away yet, so I have some sense that perhaps it's just a passing fad. However, if it means that there isn't dog-hair tumbleweed floating across the living room floor, so be it.

Journey Out of Nowhere

2007-03-12T20:13:00.000-04:00

It's been a little quiet since Vampboy's birthday around these parts. The daily trips for radiation therapy blur together the days and weeks, and suddenly all this time has past and I'm wondering what happened to it.

But, tomorrow will be a big day in the Vamp-house, as we travel into Boston for one last radiation dose. Afterwards, we "pick up where we left off" in the course of Vampboy's treatment schedule -- back into a less stressful schedule of lighter chemo doses, every three weeks, until the whole thing ends some time in September/October. Of course, it will still be a rough road, but compared to the first half of his treatment it almost feels like a vacation.

We've lucked out during the past 6 weeks on two factors that have kept Vampmommy and I from pulling our hair out. First, for some reason that will go into the "Yet Another Vampboy Mystery" category, the radiation and coinciding chemotherapy didn't knock out little guy down for the count like we thought. Granted, keeping him entertained daily is no easy task, but it can be seen as a better challenge than cleaning up gallons of vomit and dealing with a kid hopped up on morphine to manage pain.

The second thing is the team of "Vamp Helpers" that put in time to travel with Vampmommy and Boy to Boston every day, 5 days a week, for the past 6 weeks. Not only did this provide a valuable set of extra hands, but it opened up Vampboy to a world of wonderful people, some of whom he hadn't really gotten to know. It aslo allowed me to continue to "bring home the bacon" -- which is helpful on both the literal and figurative levels.

Strangely, the next 24 weeks (or so) will have its own unique challenges.Vampboy will hopefully continue to tolerate treatment, meaning that he can continue to catch up on some of his developmental delays caused by being in a morphine and fever-induced stupor for the past several months. But it also means that our little guy will return to a state of apparent boundless toddler-energy, but on many days not have the immune system that would allow us to send him to school, or out to play with friends. And, while he is curently obsessed with the new toy Dyson, I can't imagine that his quest for excellence in the custodial arts will continue to keep him enthralled. As sucky as this whole experience has been (and still is), the daily grind of appointments, treatments, illnesses, fevers and the like, have all replaced his time in daycare...How will he be without either?

For that matter, how will we be? I have my job to keep me occupied sometimes (that whole bacon thing again), but Vampmommy is full-time Cancer Warrior. We're already tired from the daily grind, but at least the daily trips into Boston were something "to do". This is complicated by our commitment to not allow Vampboy to watch TV until he's 3 (if then) -- there's no "babysitter in a box" in this house.

I guess we'll continue to benefit from the friends and family that have come to share time and energy over the past few weeks, and try as much as possible to keep Vampboy engaged in fun activities...We've got lots of time, so feel free to share your favorite!

2

2007-02-24T23:16:00.000-05:00

Dear Vampboy-

About a week and a half before you were born, I was walking to a meeting when I fell on the ice and broke my pelvis. I remember sitting in the emergency room in stunned silence as the doctor told me -- while your mother, carrying you for the final lap, leaned back in the chair next to me. "How could this be?" I wondered. "First of all, I'm 34 and not 64 -- aren't I a little too young for my pelvis to break? Secondly, there's a baby on the way any moment. How am I supposed to be the dutiful husband on the big day when I can't even walk?"

Fortunately you waited until my healing had me only hobbling on one crutch, which allowed me to drive your mother to the hospital for the big event -- two years ago today. Your arrival was not an easy affair (what a surprise, I know) but I remember that through the difficulty of delivery, your heart beat never waivered. Through the heart monitor it sounded like a techno song, a "thumpa-thumpa" so powerful I can still hear it in my head to this day. It is the strength of that heart, I know now, that has brought you through to this moment. Turning two is a big affair for anyone, but in your case it is a quiet miracle that almost didn't happen. I have wandered through today with a mix of typical parental glee, great sadness for what you have endured, fear that this may be the last birthday, and yet joy at the opportunity to celebrate your big birthday at home with family and friends, rather than the hospital.

These days I find myself looking to you for strength. Here you are, after more than 6 months of hell -- needle sticks, blood transfusions, surgeries, drugs, radiation, tube feedings -- and you run about grinning ear to ear, wearing your birthday crown with the enthusiasm of any giddy toddler. Your youth gives you the ability to be present in any moment, allowing you to forget the sickness of yesterday and be present with the cake, strawberries, toys and family that is your today.

There is so much I have learned from you already. As I watch you run around with your new remote control car, laughing wildly as it spins on the ground, the only thing I can think is how desperately I want more birthdays with you, and how much more I'm sure you have to teach me. As you mark your transition from baby to toddler, I just want to throw out to the world how crazy I am about you. In spite of everything we've been through, I wouldn't trade your presence as my son for anything in the world. I'd gladly break my pelvis again, or bear any pain necessary, to see you laugh like I saw you laugh today.

Here's to many more laughs as father and son. I love you, kid. Happy birthday!

Dad

Possibly Maybe

2007-02-17T23:54:00.003-05:00

Like most parents, finding the time to do much of anything beyond breathing is a challenge. When you're trying to juggle work, marriage, kid and cancer, it gets a little more complicated -- after all, those chemo and nausea drugs are messy if they spill.

Here is my most recent list of things I'd do with my free time if I had any. Note I did not include drool, sleep, vegetate in front of the television, or rock back and forth in a corner -- as those items are automatics when fleeting free time arises.

1. Upload my cd's to Itunes. Note that this would require a lot of free time.
2. Write more. Not just on this blog, but perhaps join the ranks of those who pontificate on multiple sites around the web. Or, work on one of the many "great works of literary genius" I have swimming around in my head.
3. Yoga. I've been wanting to try Bikram Yoga for some time. This is the kind that involves the class being held in an oven. Since I'm not a fan of hot days nor am I at all in shape, I figured this would be the perfect way to push myself into health -- or perhaps into a coronary.
4. Estate Planning. I never said that everything I'd do would be fun -- and as the parent of a 2-year old, I hang my head in shame that this item hasn't been taken care of. At least avoiding my end-of-life work involves preventing my son's, though.
5. Read. It's taken me 6 months to read Eragon -- a kids book, for heaven's sake! Never mind the stack of Utne and Sun magazines that is piling on my nightstand.
6. Get Techno-savvy. Let's face it; I may know how to put a few words together, but I haven't the foggiest idea what I'm doing in cyberland. That's why there are no funky banners, no purchased domain names, no interactive do-dads here @ Vampdaddy.

There are certainly more - in fact. #7 should probably be "think of more things to do with the spare time you don't have". Nevertheless, they are all stark reminders of what "could have been", versus what is. Not that a having a healthy child gives you all the free time in the world, either -- but when your weekends that would normally be spent in "family outings" are instead spent in the hospital, it makes it all the more acute.

Fortunately we are on a hospital-free weekend at the moment, and outings abound. However, with a hospital stay looming for next weekend most likely, I'll forgo accomplishing any of the above, and focus on the sleeping and drooling.

It's all about priorities.

The Hipster in Me

2007-02-12T16:25:00.000-05:00

So, the parent-blogging world is a-twitter with an article released by Time last week that basically suggests a rather negative impression of "parents today", particularly of the Doc Martin-wearing, alternative music-listening (when "alternative music" was a phrase that actually meant something), blogging type. Many of my counterparts in the parent-blogging world have weighed in a response...Do I dare miss my chance to be counted?

While my blog may have taken a detour into medical drama, my initial intention was simply to have a place to share my experience as a parent, and perhaps dialogue with others entering into the foray of momma and dadda-hood. My current circumstance has added another layer to the purpose of my words here...But it has never had anything to do with stroking my ego or keeping me at the "cool table" (truth be told, I've never sat there -- are the seats heated?).

Yet, James Poniewozik writes in the article:

This is not to say the hipster writers are bad parents--or writers; their work can be wise and moving. But the generation that as children was told by TV that "the most important person in the whole wide world is you" is finding it hard to pass that torch.

All parents face the moment where their life to a point takes a back seat to the child in front of you -- and the reality is, the parents I've connected with through blogging have happily embraced that developmental milestone -- even those who can successfully lip-sync a Cocteau Twins song (an that takes work).

Maybe we should all apologize. I guess I didn't realize that parenting was about secrecy - that it as wrong to openly discuss my experience becoming a parent (and a pretty good one at that). In an age when most people don't even know their neighbor, I had the audacity to enter into a community of people who are in the midst of new parenting and talk openly about it. I guess I figured I'd learn something, or at least think I'm not alone when my little one does something strange (like eat Cheddar Bunnies dipped in sour cream). I guess I was wrong -- after all, secrecy has done wonders for families (see: divorce, abuse, neglect). My god, it's a wonder any of us talk about our families at all.

And forgive me if I take pleasure in watching Vampboy dance around the house to Eurtyhmics. I believe that good parenting includes allowing your child to get to know you -- what makes you who you are, what you're likes and interests are. How on earth are they expected to rebel as teens if they don't know that stuff? And my attempts to connect my son with who I am has nothing to do with trying to "remain hip". It's about who I am, which last time I checked I can't really change unless placed in a witness protection program.

Am I a hipster parent? Well, the survey I took tells me that I'm a little bit hipster -- if I lived in Park Slope, I'd apparently be a more so. But to me, being a good parent, who treats their kids like gold and shares their experiences with the world is hip. So you won't hear any apologies from me.

Of course, this James fellow only needs to read a few entries on my blog to see that there are parents out there who give up parts of themselves no parent should have to in order to do what's right for their kid, and being a "hipster" has nothing to do with it.

Blog on, fellow parents. I'm off to help Vampboy load up his ipod for the next chemo round, and get him fitted for his own steel-toed boots and leather jacket. For the non-bloggers reading this, I encourage you to continue to check out the other blog sites I have linked on the right of my page. These are good people (and parents) who have something to say.

God is a Bullet...

2007-02-10T19:45:00.000-05:00

...A bullet dodged, apparently. Testing an much examination of Vampboy's nether regions have shown that it is indeed not chicken pox that's going on...What it is we're not sure yet, but it's manageable enough that they let us come home last night. So, we're enjoying a weekend that was almost spent in quarantine.

So this is what it's like to have a work furlough from prison!

A Pox on our House

2007-02-09T00:58:00.000-05:00

One of the tough decisions parents need to work through is the myriad of vaccinations that young tykes are given. There are so many questions -- are they worth it? Do they work? Could they harm my little one? Most choose to follow the advice of doctors, and proceed with the hopes that the "immunity armor" will pay off.

A recent addition to the army of vaccines is one for varicella -- that fantastic virus that causes chicken pox. Vampboy had it, as did many of this friends. As, perhaps, your young one did as well.

Given my day today, let me share with you some little known facts about the chicken pox vaccine. Whereas the polio vaccine prevents people from getting polio, the chicken pox vaccine does not -- in many kids, the vaccine simply prevents the severity of a chicken pox outbreak.
Remembering my own experience (I think I swam in a tub full of calamine lotion for about a week), I would normally be quite pleased at the concept ofVampboy not facing the "terrible itch".

Then again,"normally" is a word that has been stricken from my vocabulary. See, having a vaccine that doesn't prevent chicken pox entirely isn't very comforting when you are the parent of animmuno-compromised cancer patient. Which, I am.

And, you're little one gets chicken pox. Which mine might have.

I say "might" because the doctor's aren't actually sure that's what's going on. Granted, one of his dear friends he got a chance to hang out with during the "chemo vacation" came down with a mild case about a week ago, but the timing of the play date leading to exposure and outbreak doesn't totally add up. Even so, whenVampmommy noticed the rash on Vampboy's backside this morning, she quickly took the reigns and had him shuttled into quarantine at the clinic -- which turned into our first admission to the hospital since well before Thanksgiving.

Testing that detects chicken pox came back "inconclusive". To complicate matters further, the typical sores seen with "CP" look different in kids that are vaccinated -- and even more so for kids undergoing chemotherapy. So, on top of spending a night away from home for the first time in awhile, our little one has had the distinct pleasure of having about a dozen doctors, nurses and specialists staring at his bottom for the better part of the day.

Tomorrow will arrive with more bum-looking, and depending on whether things progress or improve they will hopefully arrive at a conclusion as to what's going on. Until then, we wait and pray that it's just a rash. Feel free to google the impact of chicken pox on kids undergoing
chemotherapy if you wish -- but trust me when I say it can potentially make my anti-itch bath time look like a relaxing wash of Jean Nate Bath Splash.

Shock and "Awwwwwww"

2007-02-05T06:23:00.000-05:00

Well, one week into radiation therapy and Vampboy is doing shockingly well. Our surprise at this comes less with the fact of his radiation therapy (as there are little short-term side effects from that), but instead from the fact that he also had a rather intensive chemo round. Even so, he is running about, continuing to eat all of the pasta and cream cheese that he can, and overall in a great mood! This is not at all what we expected, and we are painfully aware that it probably won't last -- but we'll take it when we can get it.

So, let us turn our attention to last night's main event. I am, of course, not talking about the Super Bowl. Given that my favorite sport to watch is Westminster Kennel Club (to play...Candlepin Bowling), it should come as no surprise that I speak of the most brilliant piece of counter-culture television on the planet.

I speak of Puppy Bowl III.

Most stations understand that they're hosed pretty much regardless of what they put on while the Super Bowl airs. However, while surfing for a distraction three years ago, my wife and I stumbled across this brilliant effort on the part of Animal Planet to embrace this fact, throw their production arms in the air and say, "screw it".

Yes, there is nothing like 3 hours of puppies flopping around a mock-football field to ease the soul. Over the last couple of years they've added a few elements for pizazz:

Bowl Cam. This element has been there from the beginning, offering dizzying shots of dogs tongues as they lap up water in the bowl. Of course, most of the dogs are also obsessed with the light coming from underneath the bowl's glass bottom, so they spend their time pawing the water trying to get at it.

Human Ref. The first year there was never any sign of humans -- with the exception of the occasional hand that could be seen pushing the puppies down the chute and into the field. The last two years have included a referee, who calls time out to refill the water dish. Thrilling.

Kitty Half-Time Show. Forget Prince -- or any concern for a "wardrobe malfunction". Kitten's frolicking on a mock-stage to techno music takes the cake. The excitement of watching cats lounge underneath a disco ball is of course heightened by the fake cheers that emanate from the thousands of fans painted on the walls.

Tail Gate Party Shorts. What's a game without shots of the fans watching with baited breath? These dogs clearly know how to party, and this addition to the broadcast gave the audience a chance to connect with the "average snoopy".

Instant Replay. Didn't catch Spike falling on top of Lucy? Missed Fido tossing that ball in the air and hitting Pudge on the face? No worries -- here it is again in slo-mo, with cheese-cloth effects to make the scene look dreamy!

Vampboy does not watch TV yet -- but I think we may indoctrinate him with Puppy Bowl IV.

Gloomy Monday

2007-01-29T21:48:00.000-05:00

Well, we are back in the saddle of intensive-chemo hell today. It's been a long one, so let me simplify with "the list".

Into the White. The final days of chemo-free life included a return to form in Vampboy's eating. I'm proud to say my son enjoyed the typical cuisine of his age group -- entire plates of pasta and sauce (without the need to chew -- just swallow it whole!), banana bread with cream cheese (or more like, cream cheese with a little banana bread), sour cream (with a spoon), yogurt, and chips and salsa. Most of this all at once, by the way.

The Great Unknown. Today was started with our first trip for radiation therapy. After dealing with the bureaucracy of medical establishments, the efficiency of the radiology department was breathtaking. The smooth operation made the sheer terror we felt in this big step somewhat subside. Vampboy did okay, so we're off and running and hoping for the best.

Just breathe. Vampmommy's cousin is, as I type, in the midst of a double-lung transplant. Having a family member in the midst of such an intense medical drama on the same day as our beginning of "round two" made today a bit more difficult emotionally. We are certainly sharing the good energy that comes our way with him tonight.

The Sound of Silence. Vampboy is losing his hearing -- or at least some of it. This is largely due to a drug called Cisplatin. He will most likely need a hearing aid in at least one ear when this is over, and we are beginning speech therapy as soon as we can squeeze it in to take advantage of what remains of his hearing and keep him moving towards speaking in complete English instead of broken toddler-babble. His hearing may get worse, due to further Cisplatin doses over the next two cycles. But in the meantime, I'll make preparations by practicing charades, I guess.

There you have it. Let the games begin.

You Know who you are at Every Age

2007-01-22T07:39:00.000-05:00

Well, it's birthday week in the Vamp household. Vampmommy celebrated her birthday with a little gathering on Saturday, even though her actual birthday isn't until Friday. That's "Return to the Hospital" day, so there won't be much celebrating to speak of.

In the meantime, my day is today, where I make the big transition to 35. Somewhere there's a form I'll have to fill out that will put me in another age category, and I don't think I fall into a subset any longer that considers me "a youth".

Ah, well -- as I start the day with Vampboy in my arms, desperately wanting to return to the banana bread awaiting his eager tummy in the kitchen, I thought I'd share with my readers my little ritual for this day - when I take a moment to listen to "Birthday" by the Sugarcubes. The video is a bit strange (it's Bjork, after all), but enjoy.

The Whole Price of Blood

2007-01-18T17:15:00.000-05:00

There is, first and foremost, the cost to the body of the cancer patient. Scars, loss of hair, loss of hearing, loss of cognitive function, loss of weight. Damage both immediate and latent, both known and "yet to be seen".

But then there is the cost to those in the immediate ficinity -- family, loved ones. It's like the shockwave that rips the windows from homes miles away from a massive explosion. Crippling emotions that can be felt physically. Lack of sleep, lack of appetite -- lack, lack lack.
Then there is the ripple effect beyond that -- the plans laid waste, the perceived future that now sinks into darkness. The very nature of existence ripped from your world view, stomped on, and returned in pieces.

The cost comes in so many forms - physical, emotional, mental, financial.

How high a price can one be asked to pay?

If I haven't said it yet -- fuck you, cancer. Fuck you.

Tiresias Speaks

2007-01-08T21:20:00.000-05:00

During my days as a theatre student, I was a member of a comedy troupe on campus that did parodies of popular works of literature. Hamlet, the Bible, the stories of Edgar Allen Poe, all met the sword of our dark humor. Good times, indeed.

Our crowning performance, and one that I still have somewhere on video, was our version of Oedipus Rex. This is the classic Greek tragedy about the man who murders his father and marries his mother, pursuant to a prophecy that the father was told at his son's birth. While he does what he can, including leaving his son to die in the desert with his feet pinned together, it does not stop the series of events that were foretold. The son (Oedipus), after realizing what has happened, promptly expresses his shame by gouging his eyes out with curtain pins.

And, yes, our version of it was damn funny.

Anyway, the major theme behind the play is one of fate versus free will -- are we really masters of our own destiny, or are we flopping along like fish on the line of life, certain to act out whatever fate had been dealt us from some distant force? Complex concepts, do doubt -- but they are the ones that come up when you are faced with what we face.

Award shows (particularly the Grammy's for some reason) seem to be the perfect platform for even the most self-absorbed lunatic to credit God for the gift of the moment. As if the supreme being was sitting around one day and said, "You know what I need to do? I need to have that Lauren Hill lady make a killer record that sells like gangbusters!" Is it really that simple? Are our lives already laid out, and all we have to do is live them, and take the good and the bad as inevitable parts of who we are, what we were meant to do or learn? Or, is this all random chance, where some of us coast along while others get either the Grand Prize or the big bag of dog poo, each for no other reason than "because"?

We have had our meeting. We have heard once again about the tiny points of radioactive beams that doctors want to pass through my son's brain, into the space where his tumor was. We have understood that Vampboy will most likely die without this in his treatment. We have heard that he will have cognitive delays, which could range from the simple learning disability, all the way to being unable to live independently (the latter does not seems to be playing out as a possible result of this treatment according to the experts, due to the small size of the tumor site along with the low radiation dose. But, like any rare side effect, it's their job to make sure we're informed). The medical team has begun setting up appointments and tests to prepare for the 6 weeks of radiation treatment, while we contemplate the desire to continue.

But, is it really our decision to make? Forget the fact that the treatment team is in agreement that it makes sense, and that they think the risks are worth it. Forget that, given the likely scenario if we don't, we don't actually have a choice here. The reality is, if we believe that things happen for a reason, whatever decision we make is the decision we are supposed to make. The burden of second-guessing ourselves for eternity is lifted by the mere fact that we are doing what we are supposed to be doing.

Liberating, definitely -- a psychological construct to prevent us from going insane, perhaps -- but nevertheless we have "decided" to proceed with radiation therapy for Vampboy. It will start at the end of January, and go until March. It will also add 6 weeks to his treatment, meaning that our August end-date will be moved to September/October. It will make our sick little one that much sicker, and two tired parents even more spent.

Whatever road we are on, let us hope that our destiny ends more on the comedy than tragedy side.

What are you doing....

2006-12-31T19:09:00.000-05:00

New Year's Eve -- I seem to remember some very fond memories of this night in my past....

1. One year while in High School, I spent my New Year's Eve rewinding all of my tapes (and I had a lot of them) to the beginning of side 1. What a better way to start the new year than right at the beginning? Yes, I am clearly a child of the 80's. Other years I would spend with one of my best friend's family, and my friend and I would sit in the corner and feast our eyes on the oddities of her clan. This included one woman who considered herself a "psychic stripper". Fortunately I never had the chance to see her at work....

2. During several years of college, I would have friends from out of town visit me in Boston for the annual First Night. I think we did First Night festivities once, before realizing that there's only so many ice sculptures, bad theatre and fireworks you can stand when it's 30 degrees below zero. The latter years were spent with a good home-cooked feast, as well as the never-ending saga of a friend who seemed to get hit on by some wacko every time she set foot in the city for the holiday. This included my favorite, when a man approached her in the dairy isle at the store while we were buying the fixings for our New Year's Eve dinner, and offered to smear her body with clam dip. She thankfully declined.

Those years are far behind, and even the concept of marking the occasion right now seems meaningless. But here I sit, hours before this ugly year transitions into one of equal unpleasantness. Vampmommy's parent's are entertaining Vampboy after a little dinner, and hopefully soon he'll be off to sleepy-land so I can celebrate the holiday by dawning a surgical mask and gloves and giving him his chemo. In the meantime, I thought I'd provide you all with a little update.

We did spend the holidays at home -- these current chemo cycles have proven easy to handle, meaning that Vampboy regained a great deal of himself these past few weeks. He's eating, babbling, walking, and proving to be the model for your average toddler on the cusp of 2 years old -- tantrums and all. Conveniently a stomach bug (at least that's what we think it was) got him out of his frantic feasting, so we've continued to feed him through his tube and clean up the occasional vomit.

In some ways, however, having this "vacation" from the past six months of illness and drudgery is not as easy or relaxing as one would think. For one thing, he has all of his energy back, yet is not in a condition where we can just toss him back in school. For someone who is not a "stay at home kid" to be stuck at home has proven incredibly demanding on my wife and I. There is then the decrease in adrenaline and the lack of "day-to-day" drama -- which gives us ample time to take a deep breath, and survey the vast swath of destruction that has become our life. For the first time since June Vampmommy and I have had a chance to think (and feel) about the scope of what we're going through, and it has left us both very tired and not necessarily full of holiday cheer.

And the landscape is getting worse with the nasty topic of radiation therapy. You may recall that we had a rather unpleasant conversation about this component of Vampboy's treatment a few months ago, and opted to withhold making the decision for awhile. Well, "awhile" has passed, and we are once again faced with having to choose a rather unpleasant treatment regimen without a whole lot of existing data on its safety. However, there are a few new facts in the mix; some good, some not-so:

1. The type of radiation therapy we were told about before (and promptly scared out of our minds about) is not the kind of therapy that is being recommended. Instead, a more focused, less dangerous form is being offered that promises to increase Vampboy's chances of survival without turning him into a vegetable. There will still be side effects, and they will be of a long-term nature that enrages me to no end, but we'll be learning more about those at a "big fat meeting" later this week with the entire team treating Vampboy.

2. If we decide to go ahead with radiation therapy, we would most likely also repeat the same chemo rounds that are indicated in the protocol with radiation -- which means we'd spend six weeks back in "Induction Hell". With radiation effects thrown in, this means six weeks with a very, VERY sick little boy.

3. About that six weeks -- radiation is a daily procedure that would require Vampboy to be under anesthetic. Every day for six weeks is a huge logistical nightmare by itself -- let alone the fact we are an hour from Boston and this would take place during the winter months.

We're not yet sure what our choice will be, but this is what runs through our heads on this New Year's Eve. Try as I might, when I look back on 2006, I cannot call to mind any memories before this all began. That life seems lost to me -- and the future that we had envisioned is just as obsolete. So, we look forward to 2007 with some sense of apathy -- same shit, different year, I guess. However, it will no doubt be a big year -- just not big in a "Best Year Ever" sort of way. Not even close....

I hope you all look back on 2006 with a bit more fondness than we do, I hope that you appreciate how thankful I am to have you as a reader. Here's hoping that my post on December 31st, 2007 is more upbeat than this one. Maybe that night I'll even pull my remaining cassette tapes out of storage and rewind them!

Firsts and Six

2006-12-18T22:56:00.000-05:00

* Today is the first time in months that Vampboy is not accessed (no needle in his chest). He's doing so well with this light chemo round that we're able to take him off most of his anti-nausea drugs, and administer what little medications he currently needs orally.

* Tonight was the first time in months that, since there was no aforementioned needle to worry about in terms of infection, Vampboy took a bath -- in a tub filled with water, up to his chest. He laughed, he splashed, he chased a plastic dolphin around the tub.

* Tonight was this first time since early July that I read my son a story and put him to bed in his own crib. It will not last the full night, as he will need to be hooked up for the "evening feed", but it felt good to return to the old routine

* It is six months ago today that this journey started. Time flies when you're in hell too -- who knew?

Do I Love You

2006-12-10T11:27:00.000-05:00

It's Friday night. I have Vampboy in my arms, and in the dim glow of the christmas tree lights we are slowly dancing, as Ella Fitzgerald sings Cole Porter from the stereo.

Do I love you, do I?
Doesn't one and one make two?

Vampmommy is sitting in the kitchen, tears in her eyes as she prepares the next day's round of medicine. I can hear her say between soft sobs, "I want to make sure people understand."

"I know," I say, as I take Vampboy for another spin around the living room. He giggles, and snuggles closer to me.

Do I love you, do I?
Does July need a sky of blue?

It has been a long day for Vampmommy and boy -- a routine visit to the hospital for platelets, but 19 weeks into treatment we are all a little tired and worn. That's part of it, certainly. But, then there's the study.

Would I miss you, would I?
Should you ever should go away?

The Others are considering radiation treatment for Othergirl, who at almost three years old is a far better candidate for the procedure that Vampboy. In making the decision, they have contact specialists at St. Jude's for consultation. They forward to us in an email the report that was authored at St. Jude's regarding treatment for this type of cancer (which, now that we're deep into this I will tell you is called AT/RT) in children under the age of three, which both of us read over earlier in the evening. The words hang in the air like thick smoke, burning our eyes and lungs...

"Prognosis for infants and children younger than three years...remains dismal."

"...recurrance...similar to other reports of brief progression-free intervals averaging 5 months..."

Sure, we understand in our heads that none of the kids in this study were treated with the same protocol we are using now -- and the data to suggest that this protocol does work exists to a point. But still, words like "death" and "mortality" are still part of the common vernacular when describing patients with this cancer.

Or, perhaps our current mood comes from the phone call during dinner, when Death rang and asked for a seat at the table.

If the sun should desert the day,
What would life be?

We owe Vampboy's quick diagnosis to "One". One was diagnosed by the same oncologist with AT/RT one month before Vampboy -- given the disease's rarity, this is not a common occurance. However, the recent experience made it easier to catch a disease that is often mis-diagnosed, which meant that Vampboy was able to start the treatment as quickly as is suggested. At the time, One was a 15-month old girl. We've never met her nor her family, as they received treatment outside of Boston for a variety of reasons, but we always felt that "we're in the same boat" connection, and thought of them as much as we do Othergirl and Princess (a beautiful one-year old who was diagnosed a few months ago, although I don't think I've ever mentioned her here).

The phone call was from a local cancer support network, and after chatting for some time they were able to tell us that One had died back in late August or September -- the result of a side effect of one of the chemo drugs that is part of the protocol. A memorial walk was held in her name in October. We had no idea.

Will I worship you forever?
Isn't Heaven forever more?

Clean MRI scans, a son who looks great and laughs as I spin him again around the room, all conspire to help us forget the danger we are in, and what we still stand to lose. In the tired of another day at battle, we are reminded painfully that all is not well. Equal with reasons to be hopeful are reasons to contemplate the worst. I'm sure that the impossible love I have for my son is comperable to One's parents -- yet that love, and the prayers of their community, in the end did not prevent darkness overtaking.

I hold him close to me, and feel his soft cheek against mine. My grip is a little tighter than usual -- perhaps if I hold him close enough, my energy and our flitting about will keep the worst away. I need to remember this forever, I think, because I may not have more chances like this.

The dancing winds down, and Vampboy points to the kitchen, eager to join Vampmommy in the nightly routine. As a family, we settle down at the table, mixing medications, sharing giggles, and trying to remain afloat for one more second.

We want you to understand.

Do I love you, do I?
Oh, my dear,
it's so easy to see,
Don't you know I do?
Don't I show you I do,
Just as you love me?