Friday, May 23, 2008

Extractions, Part 2

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

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

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

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

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

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

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

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

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

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

In this moment, we win.

Friday, May 16, 2008


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

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

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

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

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

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

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

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

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

Friday, May 09, 2008

VB 3, C 0

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

Tuesday, May 06, 2008

Vampdaddy in the City

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

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

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

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

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

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

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