Construction Time Again

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

"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

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

Master Over My Domain

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

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

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

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

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

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

"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

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

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

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

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

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

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

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....

...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

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

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

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

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

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

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

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

"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!

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

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

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

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

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

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

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

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

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

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

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!