The New Lair

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

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

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

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

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

Before.



After.

Walk-a, Walk-a

Yep, my feet hurt.

Yep, it was worth it.

Song to the Siren

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!

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

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

"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

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

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

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

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

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

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

Vampboy's first haircut. Ever.

Amazing.

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

Extractions, Part 2

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

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!