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.