Friday, June 30, 2006

Baby Mind

Well, we finally heard from Boston today -- the Vampfamily will travel to our favorite city on Thursday, July 6th to meet the team that will become intimately connected with our future.

Until then, Vampmommy and I are beginning to wonder if the surgery didn't have some impact on our little one, but more in the way of advancement than deficit. His physical therapist, whom he has been seeing due to an issue stemming from delivery, was amazed at his resiliency -- not only has he seemed to bounce back from the operation, but he has continued to advance developmentally in spite of the near-death detour.

Perhaps removing the tumor opened the mind -- freeing something that was holding back due to the unwelcome guest. Maybe we will actually see, through this treatment, the emergence of a super-hero, who uses the alterations in chemistry to fight evil all over the world. Yes, my son, the Comic Book star.

Of course, this is all about hoping and praying that he doesn't lose anything during the rest of treatment -- a scary proposition that we try not to think about. But if his status after surgery is any indication, he should be able to leap tall buildings in a single bound, and move the Cheerios on his tray simply by using the power of thought.

Thursday, June 29, 2006

The New Vampdaddy FAQ

One must not let tragedy - be it disease, famine, or war - deter one's voice from speaking. This is not always easy, as you can feel that you have somehow betrayed the current situation by maintaining your previously understood persona. However, keeping one's voice true, even in the darkest of moments, is critical to ensure that the darkness you face doesn't get the chance to consume you.

So, it is with that feeling that I am inspired to bring back a bit of wit and merriment to my entrees here -- for it is truly the only way I'll get through the experience of my son's cancer treatment without slitting my wrists (or the wrists of some poor sod who gets in my way on a bad day).

We are still awaiting a call from the treatment team (which I find a little more than annoying), but it has given me time to reflect on the comments and questions people have sent my way -- not to mention the questions that plague me about this whole mess. So, per proper internet etiquette, it's time for a "Frequently Asked Questions" post.

Why is this happening? Obviously, this question ranks top on everyone's mind -- including mine. Some will say this is a test by some higher power with nothing better to do than stricken cute children with terrible diseases (not my idea of someone to celebrate holidays for). If this is the case, I will mention here and now that, after almost 5 years of dealing with other medical-related traumas with Vampmommy, I'm done being tested. If I haven't gotten the message yet, you should just give up and leave me and my family alone.
Of course, there are more earth-bound theories as well. Perhaps we spent too much time in close proximity to the laptop while Vampbaby napped in his early days. Perhaps one of the medications Vampmommy was on during her less-than-pleasant pregnancy stuck around to cause some mischief. Perhaps it's something in the water. Who knows -- certainly, we may never. The reality is that there is most likely no reason, and to dwell on this question is a drain on precious energy.

How are you? I had a friend several years ago who went through a terrible divorce -- very unexpected, and very sad. When he was asked this question, without hesitation, his answer was clear: "Shitty." We ask this without thinking -- it has become an involuntary reaction when meeting someone to blurt it out. My friend understood that, but was not about to respond with the similarly programmed "Fine, and you?" Of course, after awhile, his answer changed to "Not so shitty", and finally something more akin to the usual reply.
Another dear friend is presently working on another inquisitive greeting to replace this one -- as soon as she gets it, I'll let you know. The goal is to prevent that uncomfortable moment that has come for many when they've realized, without thinking, that it was not the best question to ask -- mainly because they already know the answer. For my part, I have adopted my friend's tact of responding with the truth -- Shitty, and unbelievably so. My wife has instructed people, with a laugh, that they may want to wait about a year before asking that question again.
My one exception to the honesty clause are people in the retail business. They are programmed to ask, and given that many of them are tightly wound with retail-employee angst, I'd hate to send some innocent kid at the checkout over the edge. So I will just follow along to prevent a breakdown in the middle of Target.

Have you heard from the Doctor? No. When we do, we'll let you know.

How do you do it - stay strong during such a terrible time? Honestly -- I have no freakin' idea. Wouldn't you do the same? Many have commented that they've tried to put themselves in our shoes, envisioning their own children going through something like this. It seems unimaginable -- and until last week it certainly was to me. However, I think that any parent would pull together, in their own way, to move forward through something like this. There is only so much good that comes from weeping in the corner, rocking back and forth. Eventually you have to get up and form a game plan -- especially when the child in question is taking your shoes from the mat by the door and stuffing them into the kitchen cabinet, eating crayons all the while.
That is not to say that I don't find a corner to weep in, or turn to a useless blob now and then. But the complexity of the situation doesn't allow that to happen for long. Somebody still has to change the diapers and call the doctor's office.

What can I do to help? The number of people who have asked this of my wife and I is staggering, and we are so blessed to have the legions of supporters who have offered. At this moment, I return to my answer to the above question -- I have no freakin' idea. Food has been brought, visitors have filled the house with life, and a garden is being planted for Vampbaby to find sanctuary in. When we're ready, I'm told that several groups are prepared to help us find the funds to get through, should we need more than we have (and, we have nothing, so that's a relatively safe bet). But the reality is that this new life is still taking shape. We don't know what it will cost, we don't know what our days, weeks and months will look like, and we don't know what we can expect from Vampbaby as he goes through treatment. These are the questions we will have answered when we first meet with the doctors (which we haven't yet -- didn't I say that already? Grrr...). Once we do, I'm sure we'll have some very specific answers.
One thing that's happened is that we have become part of the "cancer clique". Last night we received a phone call from a wonderful woman who founded a non-profit that supports families in our state who have children with cancer. Having been through the experience herself, she suggested that when people ask what they can do to help, ask them to tell us what they are comfortable doing. This makes sense to me, to make it easier to know who to call when we need milk, versus who to ring when the dog needs a walk. So, if you ask this question, be prepared to let us know what you are willing and able to do.

There -- the questions that burden mankind, answered in bite-sized morsels. Isn't is good to know everything?

Wednesday, June 28, 2006

In the Fog

While waiting for the doctors to call us with the next steps, Vampfamily has spent the past few days surrounded by friends, family and neighbors. My time has been spent wandering around largely in a haze, trying to process the crippling grief, anger and occasional stunned shock that comes and goes from my mind. Of course, I am going through all of this as Vampbaby runs about sqealing with glee, while the dog desperately seeks sanctuary from little hands that love nothing more than to grab at his fur and give it a loving pull.

As I've begun to come to terms with what one person has described to us as "the new normal", I have turned to the words of others to guide and sustain me. Many of those words are in the comments that have been left here, given in person as visitors have stopped by, and the cards that now decorate a wall in our kitchen. After a day where I was able to reconnect with colleagues as I returned to work for a brief visit, the words below came to the surface.

If All Who Have Begged Help
by Anna Akhmatova

If all who have begged help
From me in this world,
All the holy innocents,
Broken wives, and cripples,
The imprisoned, the suicidal -
If they had sent me one kopeck
I should have become 'richer
Than all Egypt' . . .
But they did not send me kopecks,
Instead they shared with me their strength,
And so nothing in the world
Is stronger than I,
And I can bear anything, even this.

translated by D.M. Thomas

Saturday, June 24, 2006


Author's note: I am hesitant to publish this, knowing that people we care about are going to learn some not-so-good news on a web site as opposed to a phone call. However, with such a large supportive community, this is the only way we can inform them all. Telling the story over and over is hard. So please forgive me now.

You know when those moments happen that change your life forever? Where you are one person one second, then before you can even finish a breath you are someone else entirely?

This happened to me when Vampbaby was born. With Vampmommy passed out from the drama of delivery, I made my way to the nursery and said to the nurse at the door, "I'm here to see my son." At that moment, I felt the sutble shift from suddenly being a young thirtysomething to being someone's dad.

The next moment came yesterday, when I spoke the following words to a someone at the house we've been staying in while Vampbaby was in the hospital.

"My son has cancer."

Yes, I am now the father of a child with cancer. In our "talk with he doctors" yesterday, Vampbaby was diagnosed with an incrediby rare and incredibly nasty form of cancer. Only 200 children have been diagnosed with this tumor since 1985. I won't get into the scientific details here, only because what we have been told is that existing literature and information available on-line regarding this cancer is completely inaccurate.

What I will say is that there is one form of treatment that has been discovered that has shown success in the few kids that have been diagnosed over the past few years -- and the doctor leading the treatment is out of Boston. So, close to home is the one man that can work to ensure that I have a son to blog about in a year.

We are home now, and our son is enjoying a day surrounded by family and friends, walking and talking (and throwing the occasional temper tantrum) as normal. The team in Boston will be processing the data from Declan's surgery early next week, and later in the week we will meet with them to begin the process of treatment . . . Which will take a year.

The optimism and sense of closure we felt with the success of his surgery has quickly faded. We are deep into some dark territory, and the enemy before us is about to make the next year of our lives a nightmare. But we are comforted by the love and support shown by people who have tuned in here, and we will continue to use this space to update everyone on Vampbaby's (and our) journey. I hope as well to continue to use this space to muse about parenting, even though my parenting is about to take a very difficult, trying and scary turn.

Friday, June 23, 2006


And now, a word from Vampmommy.....

Today he woke with a smile.
Today he asked and signed for more, again.
Today he ate a whole bananna.
Today we will talk with the Doctor.
Today we laughed and giggled while playing with his new puppy (thank you Patty)
Today he picked up and flashed the flashlight in his own eye, it made us laugh
Today he compared belly buttons with Daddy
Today we will talk with the Doctor.
Today he poured Cheerios all over the bed.
Today he played with a box full of blocks
Today we read our favorite books
Today he played with an empty Cheerio box.
Today we will talk with the Doctor.
Today we will talk with the Doctor.
Today we will talk with the Doctor.
Today, we go home.
Tomorrow . . .

Thursday, June 22, 2006


Not so fast, Vampdaddy....Think that this is a done deal? All resolved? Roll end credits?

Not quite.

While yesterday was a day of highs, today has been a little low. Vampbaby is still doing amazingly well -- his left side is functioning at a level so close to normal that someone who didn't know about the surgery would never know that anything was wrong. However, this morning they took off the cap that covered his head -- showing his beautiful curly hair, and a scar in the shape of a "Z" above his right ear, as if Voledmort hit him instead of Harry (or Zorro came by and said "hello, baby!"). It will of course heal, and I'm certain that in a few months you won't even see it, but looking at it this morning made this entire experience real for me. It was the concrete reminder of what the last few days have been, what it has meant to us, and what it will potentially mean to our futures. And the emotions that I've been sitting on to get through each day came out, little by little. A good and necessary release, but not one I was prepared for at that moment.

Then there is the growing picture of returning home, and as Morrissey says on his new album, "there is no such thing as normal". The drama isn't finished -- we still don't know what the tumor was, and the fact that it's been more complicated than not to identify it is not necessarily good news (nor bad -- but fear of the unknown rears its ugly head). And, while there won't be any need for future brain surgery (most likely), there is most likely something that will need to be done -- Vampbaby will at least be on anti-seizure medications for a couple of months, and that may be just the beginning.

We are not out of the woods yet, and it is a dark, dense forest filled with uncertainty. So we will do our best to focus on the successes of yesterday, and take the mystery one day at a time.

Wednesday, June 21, 2006

The Little Vampbaby that Could


I think that's my new favorite word.

It's the word that the surgeon spoke this afternoon after reviewing Vampbaby's second MRI, where Mr. Tumor was nowhere to be found. There might be little tiny bits beyond the MRI's scope in there, but those should be eradicated with medicinal treatment as opposed to further surgery. The identity of our unwelcome guest remains a mystery, and now scientists from all over the country are examining what came out of my son's head. It could be a week or so before the "big reveal", but whatever it is, it no longer will play "shock the baby" on my son.

This big news capped a quite, calm day of healing that has seen our son rebound in a way that I can't even believe. While some weakness showed up on his left side this morning due to the post-operative brain swelling (which is expected), it seemed to take a hike by late afternoon, when we set him on the ground for the first time and held his hands as he took his first steps with an ease that took my breath away. We also "graduated" from the Pediatric Intensive Care Unit (PICU) to the regular Pediatric wing -- which is full of toys and fun things to keep Vampbaby motivated to move (although, our new room is the size of a small walk-in closet, so said movement will be done in the common area of the wing).

Today was also a day to reflect, as I often do, on the flip side of the situation. There is no better time to discover the great joys that exist in life than during those times that seem so far removed from it. We discovered it today in the amazing stream of emails, phone calls, blog comments, prayers, meditations, drumming and other calls to the universe that friends, family, co-workers and complete strangers have sent our way. We found it in our son's steps, in the strength he showed when he lifted a heavy object with his weak hand, and the smiles that have started to come back. And we find it in the voice of the surgeon, who spoke my favorite new word.

As it stands right now, amazingly enough, we will most likely be going home on Friday to continue the healing (a tumor found, removed and recovered from in a work week -- who would have thought?!?). Friday morning we will work on the plans for returning to a sense of normalcy that, for several days now, we never thought we would see again. Then we will return to the "real world", still surrounded and benefiting from all of your kind words and energies.

Tuesday, June 20, 2006


Thank you again, one and all, for your kind words and support.

I write at the end of surgery day with some good news. The procedure to remove the tumor seems to have gone well. Not only is the surgeon feeling confident that the majority of the mass was removed (and will most likely not require a second surgery down the line), but our little one awoke from the procedure as feisty as ever, refusing as usual to lay dormant in a crib. Our first exposure to him was as he was carried by the medical team back to his room, while some followed behind with the empty bed. In addition, he is moving his left side -- so much so that the surgeon did a little dance of joy while watching him flail about in protest of the prodding that followed his awakening. Movement like that right in the beginning is a great sign that minimal function (if any) has been lost.

He spent most of the day sleeping, but did come around enough to sign and say "more", his usual request for food. He then proceeded to down enough liquid to fill a medium size fish tank, and nibbled on a few crackers before falling back to sleep. I never thought the sound of him crunching a saltine would sound so beautiful.

Yesterday my thoughts were focused on disbelief that someone was going to be mucking around in his brain -- of course, thinking that it meant the worse. Today, I had the same thought, but the disbelief this time focused on how quickly he seemed to emerge from the procedure, and return to the fussing and flailing about that keeps us on our toes. A wonder of modern medicine, no doubt.

However, we are not anywhere near the edge of those woods we hear so much about. Tomorrow comes a second MRI, to determine if any tumor was left behind. In the coming days, a team of scientists will be playing an advanced episode of "Mister Wizards World", trying to figure out exactly what kind of growth it was that was nesting in our child's brain. That information will inform any future treatments he may need, whether surgical or perscriptive. We will also begin to work with the little guy on his healing process, and hopefully get a better sense of when life will return to some semblance of normalcy. And, eventually, it will finally hit us that what just happened, and we will pay someone a rediculous amount of money for a 50-minute hour to talk about how it made us feel.

Given the success of today and the ensuing optimism, we could be home by the end of the week -- or sometime next week. We will not know for certain until most likely Friday, so those who live local and want to visit are most certainly welcome. We'd just ask that you call ahead first, as we're taking one day at a time and do not want to assume that the rest of our stay here will be an easy ride. Although we hope it will....

Again, deep thanks and much respect to all friends, old and new, who have sent emails, phone calls, letters, comments, etc. They are the force that is sustaining us from moment to moment. I will try to post again as soon as we have results from the MRI tomorrow.

A Father's Day

Where do I begin with this one....

On Father's Day, my son had what we now know as a seizure, caused by a tumor in his brain that was discovered that afternoon. As I type these words, my 16 month old son lays on an operating table while a team of the region's top doctors and specialists poke at his brain.

How does one prepare for this moment? I'm still not sure -- my wife and I are still in a state of shock that we are even here. The shock wears off into true horror in those moments where reality is unavoidable -- the first time they put him under so they could do an MRI or this morning, as my wife took him from my arms and walked into the Operating Theatre, while he looked back at me and giggled.

What we know is this: the tumor is the size of a ping-pong ball, and located under the top layer of the brain between the right frontal and partietal lobes. This section of the brain controls motor functions on the LEFT side of the body, which explains why he had weakness in his left arm and leg when we first found him on Sunday morning (he had his seizure in his crib, so we weren't there to see it. I'm not sure yet if I think that's a good or bad thing).

What the tumor is, how long it has been there, whether or not they'll be able to surgically remove it all, what kind of damage we might see in movement on the left side of his body, what recovery will look like -- these will all be questions that will overtake our lives for the coming week as we look past the end of his surgery.

I'm not sure there is anything more to write yet, as the intensity of this experience will take time to unravel, even as it continues to grow more complex moving forward. I will use this space to update the status of things, as often as I possibly can, so that those we are lucky enough to call friends and family (and those new folks out there in cyber-land) will have a one-stop shop to get the latest on our situation. Prayers, kind words and support are welcomed and received with thanks.

Monday, June 12, 2006

The True Plague

Well, Vampbaby has made marked improvements on the sleeping front -- from a 2-hour screamfest on night one of our new "sleeping understanding", all the way to this evening -- where he landed softly in his crib, rolled over and went to sleep without so much as a peep. It's a miracle!

But wait -- that was too easy! No, the dreaded beast that lies in wait leaps forward, ready to pounce and destroy any shred of overnight peace we've found. And who is this monster from the depths of hell?

A cold -- or, perhaps allergies. But whatever it is, it is pouring out of our son's nose, filling his lungs with goo, and making him slightly less than his perky self. Now as I've said before, this ceaseless sniffle-fest comes with the territory of daycare. However, the fact that it chooses to arrive, almost like clockwork, on the night when we're at the cusp of a sleeping breakthrough, is almost too much to bear. We do have one ally on our side tonight, though. Since we're not sure whether this is indeed a cold, or our son showing the signs of seasonal allergies, the doctor has recommended the sleep aid from heaven known as Benadryl. If it clears up the issue, then it's allergies. If it doesn't, then it's a cold and we're screwed to a point -- but at least Vampbaby will sleep tonight overcome with drowsy-making drugs. I find it a bit unnerving that parents routinely give their kids over the counter medications to help them sleep, and I have no intention of becoming one who does that. But tonight, I will not mind the cold so much if he snoozes his way through it with a little help.

Tuesday, June 06, 2006

I scream, you scream....

As I noted in my previous entry, my beloved son has one challening behavioral issue at the moment -- that he doesn't sleep well. During the day, particularly at school, he's a napping wizard. But the overnight slumber is fleeting.

I blame this largely on too many tips and not enough solid advice right at birth. After 7 months of trying various techniques with little success, we mentioned the issue to our pediatrician, who proceeded to hand us a two-page write up of helping babies sleep through the night. My first response after reading it was one of deep frustration...Why the hell hadn't someone given this to us at the hospital? For god's sake, they stuff your exit package with diaper bags, coolers, breast pump parts, and more brochures than you can possibly read, but none of them cover the foundations needed for a good nights sleep. It was clear in reading that, for the first several months, we did exactly everything that we weren't supposed to. Had someone given this "white paper" at birth, I wouldn't be typing this right now, and my son would be out cold dreaming of dancing monkeys or something.

Before I go further, I think it's important that I point out that everyone must find the appropriate thing that works for their families -- be it co-sleeping or a tough-love, "cry-it-out" approach, or something in the middle.

For us, no one method has worked. We did co-sleeping for awhile during the second half of the night, then worked him towards making it through the night in his crib with some visits from us. Then, just as we'd get a night of two or straight sleeping without our presence, he'd catch a cold or some other ailment that made him clingly, and we'd be back at the beginning with him taking over our bed.

Well, we've decided to take the plunge and address the issue head-on. After reading several books on sleeping (and returning them to the bookstore because, in the end, they're all useless), we've settled on getting him into his crib at night still awake, and sitting with him until he conks out. Evidence from others is that, with a kid this age and temperment, that this is often the path of leas resistance.

Well, that began at 8:05. It's now 9:20, and through the monitor I can still hear him screaming. His cries are growing weaker as sleep (or perhaps laryngitis) overtakes him, but I don't hear a peep from my wife. I'm assuming that she's sitting in the chair, trying not to go insane or worse -- picking him up and lulling him to sleep in her arms.

No, now is where we screw our courage to the sticking place, and prepare for a battle that could rage on for hours...days...weeks.

Pray for us, dear friends.

Friday, June 02, 2006

A day in the life

Metrodad was kind enough to give me a little shout-out this week, a loving "where the hell are you?" after a bit of blogging silence.

Adding a new past time to one's life is sometimes a challenge, but never moreso that when new parenting has occupied every waking moment -- at least the moments that are not filled with the needed bread-winning to provide the roof over baby's head and milk in baby's sippy cup.

A day in the life of Vampdaddy looks a little something like this these days:

3:00am - Awakening of Vampbabby. At fifteen months he his still not sleeping through the night -- although he certainly is much better than early on. Our current challenge is that, when the overnight awakening happens, the last thing on his mind is a return to restful sleep in his own crib. The only satisfaction seems to come by moving into our bed, which he quickly takes over with his kicking and squirming. Sleep for me between that time and wake up is fleeting at best.

6:00am - Day begins. There is no need for a 6am alarm clock in our house any more, since Vampbaby is awake and ready to begin the day with a level of day-to-day consistency that is mindboggling.

6:05am - Feeding the Monster. I told someone recently that our son is a bit like Rainman -- if you deviate from the schedule, hellfire will rain down upon you. In our son's case, you can set your clock to his appetite, so breakfast is priority one. Taking after dad, my son is not a morning person -- not until he gets his banana and cereal, anyway!

7:30am - The great escape. Depending on the forthcoming work day, either my wife or I tosses Vampbaby in the car and gets him to school, while the other gets ready for the day in a few moments of peace and quiet.

8:30am - Save the world. I run a non-profit, so my work day involves grant writing, relationship building, money seeking, meeting going, plan making, phone chatting, and computer using. Remember the days when they promised that computers and email would revolutionize the modern work day? It certainly has, as I spend most of my day reviewing emails...The actual work happens in between.

5:00pm - World saved, return to halls of justice. Retrieval of Vampbaby is always an uncertain moment. Has he had a good day? Did he nap? Did he eat? Depending on these factors, the evening can either take a relaxing or stressful turn. The fun is in the surprise!

6:00pm - Feeding the Monster, part 2. Dinner. See 6:05am for details.

7:00pm - Tub time. All of the stress of the day melts away...At least for Vampbaby! Mommy and I just work to make sure that too much water doesn't end up on the floor and that we can get through the bath without Vampbaby pooping in the tub. Yuck.

8:00pm - Vampbaby Sleeps. Hopefully, anyway. Lights out, a little cd of whale music, and two books lull him to unconsciousness.

8:15 - Parental down time! This involve mindless zoning on the couch, watching Law and Order (because its always on some channel). The one time where we have to unwind and stare at each other, remembering, "hey. don't I know you? Aren't we married or something?" Of course, this down time is often interrupted by other duties required to keep the world from exploding, like paying bills and dealing with work that one of us had to bring home.

11:00pm - Zzzzzzzzzzzzzzzzzzzzzzzzzzzz. It is a bit more challenging these days to get to bed, as I relish the above mentioned down time. But I try not to stay up past the Colbert Report's "Word of the Day", otherwise it will hurt when the cycle starts over again at 3am.