Wednesday, April 25, 2007

Is That all There Is?

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

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

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

Sunday, April 22, 2007

Digging in the Dirt

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

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

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

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

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

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

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

Tuesday, April 17, 2007

The Brotherhood of Man

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

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

Another day of brilliant discovery.

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

If only more people saw it that way.

Friday, April 13, 2007

Sometimes it Snows in April

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

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

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

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

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

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

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

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

Bonus Track
Amanda Palmer is a freakin' genius.

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

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

Monday, April 02, 2007

The Weekend at War

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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