What are you doing....

New Year's Eve -- I seem to remember some very fond memories of this night in my past....

1. One year while in High School, I spent my New Year's Eve rewinding all of my tapes (and I had a lot of them) to the beginning of side 1. What a better way to start the new year than right at the beginning? Yes, I am clearly a child of the 80's. Other years I would spend with one of my best friend's family, and my friend and I would sit in the corner and feast our eyes on the oddities of her clan. This included one woman who considered herself a "psychic stripper". Fortunately I never had the chance to see her at work....

2. During several years of college, I would have friends from out of town visit me in Boston for the annual First Night. I think we did First Night festivities once, before realizing that there's only so many ice sculptures, bad theatre and fireworks you can stand when it's 30 degrees below zero. The latter years were spent with a good home-cooked feast, as well as the never-ending saga of a friend who seemed to get hit on by some wacko every time she set foot in the city for the holiday. This included my favorite, when a man approached her in the dairy isle at the store while we were buying the fixings for our New Year's Eve dinner, and offered to smear her body with clam dip. She thankfully declined.

Those years are far behind, and even the concept of marking the occasion right now seems meaningless. But here I sit, hours before this ugly year transitions into one of equal unpleasantness. Vampmommy's parent's are entertaining Vampboy after a little dinner, and hopefully soon he'll be off to sleepy-land so I can celebrate the holiday by dawning a surgical mask and gloves and giving him his chemo. In the meantime, I thought I'd provide you all with a little update.

We did spend the holidays at home -- these current chemo cycles have proven easy to handle, meaning that Vampboy regained a great deal of himself these past few weeks. He's eating, babbling, walking, and proving to be the model for your average toddler on the cusp of 2 years old -- tantrums and all. Conveniently a stomach bug (at least that's what we think it was) got him out of his frantic feasting, so we've continued to feed him through his tube and clean up the occasional vomit.

In some ways, however, having this "vacation" from the past six months of illness and drudgery is not as easy or relaxing as one would think. For one thing, he has all of his energy back, yet is not in a condition where we can just toss him back in school. For someone who is not a "stay at home kid" to be stuck at home has proven incredibly demanding on my wife and I. There is then the decrease in adrenaline and the lack of "day-to-day" drama -- which gives us ample time to take a deep breath, and survey the vast swath of destruction that has become our life. For the first time since June Vampmommy and I have had a chance to think (and feel) about the scope of what we're going through, and it has left us both very tired and not necessarily full of holiday cheer.

And the landscape is getting worse with the nasty topic of radiation therapy. You may recall that we had a rather unpleasant conversation about this component of Vampboy's treatment a few months ago, and opted to withhold making the decision for awhile. Well, "awhile" has passed, and we are once again faced with having to choose a rather unpleasant treatment regimen without a whole lot of existing data on its safety. However, there are a few new facts in the mix; some good, some not-so:

1. The type of radiation therapy we were told about before (and promptly scared out of our minds about) is not the kind of therapy that is being recommended. Instead, a more focused, less dangerous form is being offered that promises to increase Vampboy's chances of survival without turning him into a vegetable. There will still be side effects, and they will be of a long-term nature that enrages me to no end, but we'll be learning more about those at a "big fat meeting" later this week with the entire team treating Vampboy.

2. If we decide to go ahead with radiation therapy, we would most likely also repeat the same chemo rounds that are indicated in the protocol with radiation -- which means we'd spend six weeks back in "Induction Hell". With radiation effects thrown in, this means six weeks with a very, VERY sick little boy.

3. About that six weeks -- radiation is a daily procedure that would require Vampboy to be under anesthetic. Every day for six weeks is a huge logistical nightmare by itself -- let alone the fact we are an hour from Boston and this would take place during the winter months.

We're not yet sure what our choice will be, but this is what runs through our heads on this New Year's Eve. Try as I might, when I look back on 2006, I cannot call to mind any memories before this all began. That life seems lost to me -- and the future that we had envisioned is just as obsolete. So, we look forward to 2007 with some sense of apathy -- same shit, different year, I guess. However, it will no doubt be a big year -- just not big in a "Best Year Ever" sort of way. Not even close....

I hope you all look back on 2006 with a bit more fondness than we do, I hope that you appreciate how thankful I am to have you as a reader. Here's hoping that my post on December 31st, 2007 is more upbeat than this one. Maybe that night I'll even pull my remaining cassette tapes out of storage and rewind them!

Firsts and Six

* Today is the first time in months that Vampboy is not accessed (no needle in his chest). He's doing so well with this light chemo round that we're able to take him off most of his anti-nausea drugs, and administer what little medications he currently needs orally.

* Tonight was the first time in months that, since there was no aforementioned needle to worry about in terms of infection, Vampboy took a bath -- in a tub filled with water, up to his chest. He laughed, he splashed, he chased a plastic dolphin around the tub.

* Tonight was this first time since early July that I read my son a story and put him to bed in his own crib. It will not last the full night, as he will need to be hooked up for the "evening feed", but it felt good to return to the old routine

* It is six months ago today that this journey started. Time flies when you're in hell too -- who knew?

Do I Love You

It's Friday night. I have Vampboy in my arms, and in the dim glow of the christmas tree lights we are slowly dancing, as Ella Fitzgerald sings Cole Porter from the stereo.

Do I love you, do I?
Doesn't one and one make two?

Vampmommy is sitting in the kitchen, tears in her eyes as she prepares the next day's round of medicine. I can hear her say between soft sobs, "I want to make sure people understand."

"I know," I say, as I take Vampboy for another spin around the living room. He giggles, and snuggles closer to me.

Do I love you, do I?
Does July need a sky of blue?

It has been a long day for Vampmommy and boy -- a routine visit to the hospital for platelets, but 19 weeks into treatment we are all a little tired and worn. That's part of it, certainly. But, then there's the study.

Would I miss you, would I?
Should you ever should go away?

The Others are considering radiation treatment for Othergirl, who at almost three years old is a far better candidate for the procedure that Vampboy. In making the decision, they have contact specialists at St. Jude's for consultation. They forward to us in an email the report that was authored at St. Jude's regarding treatment for this type of cancer (which, now that we're deep into this I will tell you is called AT/RT) in children under the age of three, which both of us read over earlier in the evening. The words hang in the air like thick smoke, burning our eyes and lungs...

"Prognosis for infants and children younger than three years...remains dismal."

"...recurrance...similar to other reports of brief progression-free intervals averaging 5 months..."

Sure, we understand in our heads that none of the kids in this study were treated with the same protocol we are using now -- and the data to suggest that this protocol does work exists to a point. But still, words like "death" and "mortality" are still part of the common vernacular when describing patients with this cancer.

Or, perhaps our current mood comes from the phone call during dinner, when Death rang and asked for a seat at the table.

If the sun should desert the day,
What would life be?

We owe Vampboy's quick diagnosis to "One". One was diagnosed by the same oncologist with AT/RT one month before Vampboy -- given the disease's rarity, this is not a common occurance. However, the recent experience made it easier to catch a disease that is often mis-diagnosed, which meant that Vampboy was able to start the treatment as quickly as is suggested. At the time, One was a 15-month old girl. We've never met her nor her family, as they received treatment outside of Boston for a variety of reasons, but we always felt that "we're in the same boat" connection, and thought of them as much as we do Othergirl and Princess (a beautiful one-year old who was diagnosed a few months ago, although I don't think I've ever mentioned her here).

The phone call was from a local cancer support network, and after chatting for some time they were able to tell us that One had died back in late August or September -- the result of a side effect of one of the chemo drugs that is part of the protocol. A memorial walk was held in her name in October. We had no idea.

Will I worship you forever?
Isn't Heaven forever more?

Clean MRI scans, a son who looks great and laughs as I spin him again around the room, all conspire to help us forget the danger we are in, and what we still stand to lose. In the tired of another day at battle, we are reminded painfully that all is not well. Equal with reasons to be hopeful are reasons to contemplate the worst. I'm sure that the impossible love I have for my son is comperable to One's parents -- yet that love, and the prayers of their community, in the end did not prevent darkness overtaking.

I hold him close to me, and feel his soft cheek against mine. My grip is a little tighter than usual -- perhaps if I hold him close enough, my energy and our flitting about will keep the worst away. I need to remember this forever, I think, because I may not have more chances like this.

The dancing winds down, and Vampboy points to the kitchen, eager to join Vampmommy in the nightly routine. As a family, we settle down at the table, mixing medications, sharing giggles, and trying to remain afloat for one more second.

We want you to understand.

Do I love you, do I?
Oh, my dear,
it's so easy to see,
Don't you know I do?
Don't I show you I do,
Just as you love me?

Send in the Clowns

The trip down to Boston goes smoothly enough, and before I know it I'm once again standing in the MRI room with an uncertain little boy in my arms, looking around with a mix of curiosity and concern. MRI's when idle make a sound that is similar to the heartbeat of someone jogging
at a good clip, and my anxiety increases slightly so my heart is in sync. A little push of the syringe later, and Vampboy is limp in my arms, visiting drug-induce dreamland. I quickly rest him on the MRI table and step away, leaving the swarm of medical personnel to their task.

Vampmommy and I head off to get some lunch, and sit in semi-silent discomfort as we listen to a group of student nurses at the next table presenting to their teacher on "quality of life care post-cancer treatment". We tear away from the eavesdropping, and have the quick conversation that we've both been thinking about internally for some time now.

"Everything is going to be all right, right?"

"I think so. I mean, I've been telling people that I think I'm supposed to be nervous about this, but it's not how I feel."

"Me neither. I think I'm in denial."

"Maybe denial, maybe ignorant optimism? I don't know, but I don't feel as nervous as I think I should be."

"It is going to be all right, right?"

"Sure."

We both realize on some level that today's test is big. If cancer shows up, we are in a very different hell from the one we're in right now (the answer to "can it get any worse?" is "yes...yes it can"). If it doesn't, we stay in our current hell, but with some satisfaction that redemption is closer than before. All we can do at the moment is wait, re-read the research paper on Vampboy's cancer, check the calendar to coordinate the next few weeks, and nibble our salads.

We finally pay the bill, meander to Starbucks for caffeine sustenance, then hightail it back to the MRI department to wait. Strangely, the testing takes longer than usual, so Vampmommy reads a book while I pull out my Ipod and listen to all of the deep songs I can find.

My mind goes to the possible scenarios. Scrubs calls and tells us that all is well, and we head home to spread the word. Or, Scrubs comes to us with sadness in her eyes and breaks our hearts with grim truth. What would that be like? How would I react, if I found out that Death was once again crashing the party and trying to take all of the attention?

Just as I begin to envision a great deal of dramatic sobbing, the clowns walk in. It turns out this hospital is equipped with about 10 circus clowns whose sole jobs are to visit the children in the hospital and lighten the atmosphere with a little tom-foolery. In the months since Vampboy started treatment, and the weeks and weeks we've been in the hospital, we'd never run across them. Yet when my son is out cold in another room here they are, Ukulele and all. The room is quickly devoid of any kids, as the remaining two that were in the waiting room were whisked away for their turn in the scanner. This left my wife and I, the two people at the desk, and the clowns.

One of them asks what I'm listening to, as I have my Ipod earphones still in my ears.

"Nothing, actually."

"Oh, I see -- just keeping them in so people won't talk to you?" I chuckle and nod my head. "So, what were you listening to?"

"Damien Rice"

The other clown jumps in "Oh, I know him! He did that song...The Coal Miner's Daughter?"

The conversation then goes to the Damien Rice discography, and the correction that the song is called "The Blower's Daughter". "That doesn't sound too appropriate," the clown with the Ukulele says, and he begins a rousing rendition of "The Lion Sleeps Tonight". He goes from there into a Spanish version, whereby we spend about fifteen minutes all working together on how to say "In the jungle, the Lion pees tonight". I have no idea where that came from, but somehow talking to circus clowns about lions urinating in the rain forest seems completely in line with the rest of life.

Eventually some poor boy accidentally walks into the room, then makes a harried exit at the site of the clowns. They had clearly engaged with him before, so they dutifully took off to torment him with some silly song or another. We return to our thinking and waiting, but not with the same seriousness as before.

It was another ten minutes before we could meet up with our drugged son in the recovery room, and another hour and a half before we got the official word from Scrubs that our current hell will stay our comfortable (yet hot) home, as the scans showed "no signs of disease". So we are fulfilling the happier scenario of ending our day sharing good news with the world.

Sadly, the good news only means that we are ready to push forward with weeks and weeks of more treatments -- it is not indicative of a "cure" or anything like that. We can only celebrate the news for what it represents, which is only the present moment. We will once again undergo these tests in a couple of months, as another guidepost along a journey that seems like it will never end.

But thank God clowns are included.

Intermission

Wow...Have I really been away this long? In the seemingly endless suggestions on how to be an effective blogger, frequency of entries is rule #1. Needless to say, I'm in the blogging doghouse.

So, what gives? Well, it is surprisingly difficult to come up with snarky commentary when the life we are currently living goes on without much fanfare. Strangely, the "new normal" does indeed have a normalcy component that makes me feel like I've little news to share from day to day. Work, home, hospital -- mostly in that order -- has become as routine as brushing one's teeth, and I have a feeling you don't want me blogging about that (but thank goodness someone already does!).

Of course, then there's the trypto-fantastic overdosing that comes with Thanksgiving. I am happy to report after arising from my holiday feast-stupor that we spent the day at home, with family. In fact, this is the first cycle that I'm proud to announce Vampboy made it through without getting a hospital-visit-causing fever! We dodged a bullet due to a minor infection he has, but they were gracious enough to let us treat it at home by adding yet another medication to the endless stream. So he has enjoyed a few weeks of home-life, with a few day trips to the Doctor's thrown in for some check-ups and blood products.

The next big day is Tuesday, as it will take us to Boston for the all-telling MRI. We're at the end of Phase I of treatment, so this will let us know that all the puke and blood and needles and tears and ick has been working. Limbs crossed for this one, kids!

New Morning

My eyes open and scan the room. Dim light is coming in through the side of the curtain, and Vampboy is sleeping quietly next to me. Beyond that, I see the pillow VM left in her place so she could go get ready for the day without Vampboy rolling off the bed.

The room is quiet, except for the occasional hum of the pump giving Vampboy his nutrition. This morning it's Pedialyte -- clear liquid flowing through a clear tube that travels from the pump down the bed, towards the end of another tube that will complete the journey into his stomach. The sound of the pump has become part of our home's ambiance, and it's sound in the quiet of the morning is somehow soothing.

Vampboy is facing away from me, and with the aforementioned feeding tube on his opposite cheek, I see before me the unbelievably soft face of my son, uninterrupted by signs of his disease. His skin has the warm glow of a full night's sleep, and he breaths slowly and steadily. I take the moment to stare in wonder that is my son.

Shortly, he stirs -- and while I've seen many mornings greeted with cries and flailing of a kid who probably doesn't feel well, today is different. His eyes open slowly, and I can tell that he's staring off at the pillow before his face. He breaths deeply, his arms rising and his back arching in a luxurious morning stretch. Then, slowly, he turns to look at me. With a smile and a whisper I say "good morning, son" -- to which a smile responds, big and toothy. Another stretch, a little giggle, and he rolls on his side to give me a hug.

Moments of heartache, frustration, stress and fear wash away. This moment belongs to me and my son. Cancer can take away much, but in this moment it has vanished. We're just father and son, greeting the day and each other.

There will be time for battles later on today. But I hold this moment for as long as I can, freezing it in my mind. A reminder of what was, and a vision of what will be again.

More than anything else, a reminder that I love being someone's Dad.

Low, 'tis a gala night....

Well, I guess there would be no "Vamp" in Vampdaddy if I didn't post on Halloween - the Vampfamily's favorite holiday!

Vampboy spent the day wandering around in his Jester costume (good thing for Vampmommy she made it slightly over-sized when he wore it last year, so it still fits), taking candy and gifts of stickers and toys from well wishers. This was followed by a fun time decorating spooky-themed cookies. Who could ask for anything more on this day?

Well, we could -- seeing as Vampboy's festivities took place while he's in the hospital. But at least a place that works largely with kids knows when it's time to throw a party! One of Vampboy's docs came by dressed as a penguin, and while Scrubs didn't commit to the holiday as fully as she claims to, she did arrive at his room with a sporty pirate eye patch.

So, we shrug off our disappointment and take solace in the fact that he had fun, and seemed to get through the day without a crippling fever or other such nastiness.

A short post, I know, but it is late in the evening and sleep calls. As a public service, I will close my Halloween post with a little known fact: the concept that Vampire's can only come out a night is not part of traditional Vampire folklore. "Dracula" was the first novel to include that limitation. So even the day is not safe.

Nighty night.

Vampboy Rocks

Well, I would have preferred to be mentioning here that Vampboy is back in the hospital to start his next chemo round, but instead we have a few days of delay since his counts aren't high enough. So, as a consolation, here's a photo of him studying the compilation cd created by the bands that participated in the benefit concert this weekend. A future metal-head? I think Uncle Devilman should be proud....

Anniversary

Tomorrow (Oct. 11) marks 9 years since Vampmommy and I gathered our community in the middle of a big field and decided to become "legal". While our current situation makes honoring this day take a back seat (I'm not even sure if it's in the damn car), some things just need to be said. So, I'll keep it brief...

Honey, I love you. There is no one on this earth I would rather be with. Your smile, laughter and strength have been the air I breath for as long as I can remember. Your role as a mom might be in the early stages, but your role as my other half is the cornerstone of my very existence. Nine years ago, I promised to you and our community that I would not only love you for who you were, but for who you would become in the future. Little did I know the journey that we would walk together, with it's incredible highs and unbelievable lows, would take us to where we are. But there is no one on this planet I would have rather gone through all of this with.

Marriages are hard work for any couple, let alone one going through the hell that we are in right now. But "when we meet what we're afraid of, we find out what we're made of" as the song goes, and what you are made of is a grace and strength that is amazing to behold, and a beauty that is indescribable to anyone else but felt and known deeply by me. You have been strong when I have been unable to; you have lead the charge when I wanted to retreat. You have continued to give me a reason to get up out of bed and go about the day, and supported me while at the same time living on the front lines in our battle to save our son.

You have told me how amazed you are by the love and generosity that has been shown to you by our community since this all began -- yet, it is no surprise to me.

You are my true joy, my sacred love, my everything. I love you.

Devilman

My brother is in a band called Devil's Champion. People who know me and my art-house ways find it surprising that I have a genetic counterpart who enjoys full-on, screaming death metal. However, as I've learned from friends who are on their second child, the differences between siblings are almost always as fascinating as the similarities.

While my brother and I are very different in some of our tastes, we are both dads who take the job very seriously. When Vampboy became ill, my brother joined the rest of the family in offering his support. But this weekend, he will take it to the next level. Thanks to his bandmates, a heavy metal concert is being held for Vampboy, the proceeds of which will go to his treatment. In addition, the bands that are performing have put together a benefit cd that will be for sale at the show that's also available online.

I don't post this here asking people to donate more money to my son's treatment (although the generosity does not go unnoticed). I'm posting this information here because, while it's not my kind of music, I believe in two things undeniably: the fact that music has a way of bringing people together, and the fact that I have the coolest brother in the world.

So, if you like the sound of walls of electric guitars complemented by the hellfire of growling lead singers, than stop by on Saturday and take a listen. It should be quite something. I'll be the one in the back, with the required black ensemble and old leather jacket, sipping bottled water with earplus in my ears.

Bedtime Snack

Like the evening munchies? Well, check out what Vampboy has before departing to sleepy-land -- all prepared and managed by Vampmommy and I.

8pm
1. Benadryl - pushed via IV. This helps prevent bad side effects that are caused by Reglan.

2. Reglan - pushed via IV. Helps prevent the throwing up of things.

3. Ativan - pushed via IV. Another drug to prevent overnight puking.

9pm
1. Kepra - oral (pushed through the tub in his nose). Prevent seizures, which Vampboy is at risk for due to having his brain poked at.

2. Atovaquone - oral (through that there tube!). An anti-biotic, with the look and consistency of bright yellow paint. Best to give mixed with Pedialyte to dilute.

3. TPN - this is the overnight feeding that is done via IV. Add vitamins, shake, connect to pump, prime, attach to Vamboy's port, and off we go! Dispenses slowly over 12 hours, ensuring that the whrrrr-click of the pump lulls us through the night.

2am
Repeat of 8pm meds. Boy, is it dark in the middle of the night.

8am
1. Repeat of all 8pm and 2am meds. Boy, I'm freakin' tired.
2. Protonix - pushed via an IV pump. Helps keep our little one's tummy from producing too much acid.
3. Zofran - Pushed via IV. The main warrior in the battle against vomit.

2pm
8pm meds...again!

8pm
Didn't I just do this?

And you thought parenting an infant that needed both breast milk and formula was challenging....

No News Is...

You know what I hate? I hate it when you craft the perfect blog entry; full of updates, wry wit and biting satire of our current state of affairs, hit the "publish" button -- and watch as your web browser freezes and your entry vanishes into the ether. This is what happened to me last week, and in an attempt to refrain from throwing our laptop out the window, I opted instead to walk away for a few days. But, I've worked through my frustration (like I don't have enough to be frustrated with right now). So, let's try to get back to business.

Here's the stories we're working on for the 11 O'clock entry:

1. Not quite a bug, but.... Kids grow fast -- this was something Vampmommy and I have been told many, MANY times since Vampbaby was born. And, although cancer has railroaded the normal glee of watching your child develop, our little one has continued to make some of the regular strides you'd expect. Almost overnight last weekend, our little baby turned into a boy. Perhaps it was the sneakers we had to buy (he's gone up a shoe size) or the teeth that are popping out daily -- or maybe it's the fact that he's added a few inches in height -- but it suddenly seems that referring to him as "baby" seems entirely inappropriate for this 19 month old boy. So, Vampboy it is......

2. What did you say? While Vampboy has been tolerating his treatment pretty well, we are dealing with a myriad number of complications that, while they may not leave him passed out in a drug-induced stupor, still leave us with some stress and sadness. Of particular note is that Vampboy has started to lose his hearing. This is a common side effect from one of the chemo drugs, and it's only the upper register, in a zone of hearing that is only available to canines and human kids (if you're over 30, I have bad news -- you've lost it too!). It doesn't really impact him in any significant way, and we knew it was coming, but it didn't make the discovery of it any easier to swallow.

3. It depends on what the meaning of "is" is.... I'm having a particularly difficult time answering those who ask how Vampboy is doing. Not because it's emotionally difficult, but rather because my answer doesn't quite speak the truth. I am still amazed at how we adapt to situations when we have no choice. Part of me still can't believe this is all happening, yet we're in our 10th clinical week of treatment. My reaction to a question about how he is doing only reflects his condition in context. So, while these days my answer is "fine" and "well" and "good", I thought I'd provide a picture of what that level of existence means under these circumstances. So, this is what him doing "fine", "well" and "good" looks like:
* He has a tube coming out of his nose that goes into his stomach. That's he gets all of his anti-nausea and other drugs through while we're at home. It's a combination of about 6 drugs given between one and four times a day each. And, when he's not throwing up, a slow but steady stream of a combination of pedialyte and formula drips into his tummy to provide some nutrition, as he's not eating.
*His port is accessed all the time. This means that he has a needle sticking out of his chest, covered with protective tape. Attached to that needle is the IV tubing that helps us give him TPN (this is intravenous feeds, which he's hooked up to for 12 hours overnight), as well as for blood work, some meds at home, and all of the chemo drugs he receives in the hospital.
*He pukes -- on a "good day", it's only once a day. On a bad day -- once an hour. All of this fun usually happens overnight, leading some to speculate that there's some acid reflux issue. Regardless, without every medication given on time, no doubt we will continue enlarging the profits of the company that makes All Detergent with at least a small load of vomit-stained laundry per day.
*On a good day, Vampboy has the energy to play and be active as if he were not in this situation. While this is a good thing, it is challenging to be in this condition while trapped in the hospital. Not to mention the fact that his need for feeding requires him to be tethered to one pump or another 24 hours a day.
*Transfusions of blood and platelets are only done once per cycle, as opposed to two or three times. We now accept blood transfusions as simply as if they were giving him mac and cheese for lunch, but it is still a big deal. Note: let this serve as a public service announcement to all to, when you can, give blood. It is certainly put to good use!
*He's home, or at least his hospital stay is short. He is in right now beginning his 4th chemo round, but barring strange things (which are always a possibility) he'll be home Friday.

So, now you know what "good" is, which is not so good -- but we've seen it bad (VERY bad), so taken in context the above is a cakewalk.

Cold Comfort

A big few days around the Vampfamily lair of late. The fundraiser that was put on for Vampbaby was a wonderful event with over 250 people, auction items, and priceless love and energy that Vampmommy and I can only begin to appreciate. It was amazing to see so many people come out and lend a hand -- even the local TV station did a short piece on the evening news about it. (I should note that several folks have emailed since my last entry saying, "Hey, I didn't know about this!" I did post the info earlier, but anyone who is interested in the support being coordinated for us can email jackiecdp@aol.com for info.)

Vampbaby came home on Friday, with a marvelous contraption known as an NG (or nasal-gastric) tube. This is a slim tube that goes up the nose, down the back of the throat and into the stomach, to assist with feeding when taking food by mouth isn't an option. While it worked in the hospital, the evening after returning home his tube came out, following a sneezing fit where he rubbed his nose and pulled on it. (Isn't this fun?!? Perhaps I should have warned you to put down that bagel before reading on. Yuck.) Since inserting a 15-inch tube down my son's throat is not my idea of a good time, we had to await the visiting nurse to re-insert it. This left us for a few hours without a way to give Vampbaby the anti-nausea medication he needs to keep from replaying the pea-soup scene from The Exorcist. That, coupled with a missed dose of the precious drug, due to my total inability to remain conscious in the middle of the night to administer it, put our little guy into a downward spiral that brought him back to the Emergency Room at Chez Healing Sunday afternoon.

This visit brought the experience of us staying in the "Comfort Room". As we have joined the regulars on the floor in negotiating for a private room during our visits, we often marveled at the mystery private room with the hardwood floors. Shaped like a hexagon with a dent in it, the room is not only private, but spacious. The lack of closets can be overlooked when you can fit your entire family in for a quality visit.

It was a few weeks into our treatment journey that someone explained to us that the "Comfort Room" was used for patients for end of life care. When such a patient doesn't exist, the room goes to another patient that just needs/wants a private room -- as it went to us this past weekend. Yet, as I laid in the crib/bed with Vampbaby, I pondered the events that have taken place there; the grieving parents, siblings, friends. The absolute devastation that Vampmommy and I can only have nightmares about, becoming people's realities right in this room. We made a conscious effort to shake off the imagery, but it was not easy.

Vampbaby is home again, although his immune counts have already dropped, meaning his visit might be short lived. A banner, signed by all of the participants at the fundraiser, hangs over our kitchen table. There are balloons in the corner (Mylar, of course) and the wall of cards continues to fill. As I type tonight, I realize that I'll take the comfort I get from this space over the "Comfort Room" any day.

Grace and Gratitude

As I type, final preperations are underway for a benefit gala and silent auction being held tonight to raise funds to support the Vampfamily as we work through Vampbaby's treatment. Huge banners have been made, items have been donated by people we've never even met, and the local TV station interviewed me about the benefit for their evening news. Total strangers have bought tickets to attend the event with the masses that we now know as "our community", which seems to be growing by the second.

How do you thank people for this kind of giving? I'm not quite sure that it's possible, in any language. But it is moments like this where I am reminded of the fact that you never, EVER know who's life you will impact. The bank my wife and I do business at just informed us that they're putting something together, after being told through someone else about what we're going through. The BANK, for god's sake! I didn't even realize they knew who we were.

In an age where the concept of friendship is reduced to empty lists on Myspace pages, it is heartwarming to witness that true community does exist, and that caring for your fellow man isn't entirely out of style.

Tired of Sleeping

I should be in bed. However, with Vampbaby and Vampmommy returning to Chez Healing for chemo round #3 today, I am left to putter around the empty house, searching for something to take my mind off of "it all" so I can give this whole sleep thing a try. So, why not blog?

This past weekend marked the end of summer -- and thank GOD for that! I've never been a big fan of summer, but for reasons that should be painfully clear here, this summer sucked. Now we enter fall, which is normally our favorite time of year. As one friend puts it, it's so "brisk and leafy", what's not to love? Of course, it hasn't even begun and we feel as if we've lost our fall -- and our winter, spring and summer that follows -- until Vampbaby's treatment is over.

However, we cling to the moments of normalcy that creep in now and then, and we certainly had our share this past weekend. Vampbaby was supposed to start his next chemo round last Friday, but was delayed due to a low immune count (or "ANC" for those of you playing "Cancer Treatment Scrabble" at home). That meant that, for the first time since the weekend before Father's Day, we had a healthy child for an entire weekend. It wasn't until about halfway through our lunch out at a local restaurant before I looked at him, wildly pointing at the stuffed duck on the wall in front of us (when will we ever get affordable family restaurants without all of that CRAP decorating the walls?), and realized the vague sense of something familiar.

What was that, now? Oh yeah, a LIFE.

So, while we were disappointed that Vampbaby's treatment was delayed (it will mean that he'll miss the party that's being thrown for him this week), it did give us the gift of a couple of days of "the way we were". And, to prove that Vampbaby is continuing to grow and develop through this ordeal, one of our three days home was spent in the throws of what I can only describe as the "Toddler Fit from Hell". However, I'll take a bad mood and snarkey attitude over deathly ill any day.

And with that, I'm going to count some sheep -- or something like that. Nighty night.

Doctor, Doctor

There are those in the medical profession who have a tendency to treat their patients like lab rats. Often this is not due to some personal social-deficiency on the part of the practitioner; rather, it is a result of our crippled system of care that charges by the second and asks $3000 for a dose of Tylenol.

Then there are those that treat their patients like, well, patients -- human beings with the right to respect, caring, and the promise of every effort being made towards a return to health. These folks understand that people deserve an open ear and heart -- an expert who can sit in the presence of their illness and understand. But, they do it with an emotional distance that is expected of mental and physical health professionals. So, they are fantastic support, and you might send them a holiday card, but they won't be stopping by your house for dinner and a rousing came of Chicken Foot (I'll let that one linger for awhile...).

Then, there is K.

I'm not quite sure if she'd be up for Chicken Foot (and no, I'm still not telling...), but K is in a class of doctors I have never worked with - that is, until the "Big C" parked its ass in my son's head and wrecked our life. For her, patients are not lab rats, not even patients -- they are full human beings, in the throws of a struggle she knows she can only begin to fathom. She understands, even without us speaking it, that we once had lives that are very different than the current reality, and that we want someone to make it all go away and return us to the world we knew. In our son she sees all of our hopes and fears -- all of the plans that are now shattered, the grief that goes with it, and the desperate desire to move back to a place of dreams and possibilities as quickly as possible.

It is from that place of understanding that something amazing has happened: K has become a part of our family, and a friend in moments where the friends, family and community that are with us in spirit can't begin to go. She has broken down the typical doctor/patient relationship, understanding that we are not on typical ground with this illness. She has made us feel as if we are the only family in her charge (even though I'm pretty confident that we're not), and moved great medical mountains to get Vampbaby's treatments moving forward without delay. She has answered our questions with great care and honesty, even when her answer was "You know, I have no idea, but let me go find out".

In addition to this amazing professional grace and tact, she is also our age. To be an attending physician at one of the most prestigious Cancer treatment centers in the world at 32 is nothing to sniff at, certainly. But having someone who we can relate to on an equal level, even with a little dark humor thrown in, has made this "ninth circle of hell" far more tolerable than it would have been otherwise.

Of course, I have chosen this moment to regale you with her brilliance, because our time working with her as our lead champion is coming to a close. At the end of this week, K will leave her post in Boston to become the lead specialist at another hospital in Oregon. We have spent the past couple of weeks in denial at the end of our partnership on Vampbaby's care, pushing off the inevitable "goodbye" and "thank you" in favor of small talk and plans for the actual moment of "see-you-later". But Friday comes, and with it the inevitable moment where we will most likely just look at her, babble incoherently and cry.

We fear not about Vampbaby, as K has left us in the very capable hands of an entire team of brilliant doctors, including the doctor who worked underneath K whom I will lovingly refer to here as "Scrubs" (and she knows why!). There are also others we are now getting to know and admire, and I most certainly will be back with more tales of them once I come up with cute blog names.

But to K, in the presence of all of my readers, I say "thank you" -- with the understanding that no amount of gratitude in any language I know of will exactly capture the gift you have been to us. You have often commented on how amazed you are at the strength and poise Vampmommy and I approach this nightmare. You should know that it is, in part, because you have created the space for us to function where perhaps others could not. We owe much to many, but we certainly could not have come this far without you.

And, as I'm sure she'll be reading this at some point soon, Vampmommy and I will leave open the Dinner/Chicken Foot invitation for as long as necessary.

License to Parent

It has been a rough week for the Vampfamily, with our little one quite sick at the start, and quite well at the end -- with a psychotic break in between, thanks to a drug reaction that some of the doctors swear made him hallucinate. After a day of pointing at nothing and violently thrashing about in some sort of rage, the drug was removed, and Vampbaby spent the next day sleeping in my arms.

On top of the topsy-turvy emotions and conditions that our little one finds himself in every day, there is the fact that our son is actually a toddler, with all of the behavioral struggles that make the age so precious. Even though we know we are living under extraordinary times (and doing so with some flair, I might add), it is easy for Vampmommy and I to feel that we are not adequate parents to care for our little one.

Then I stumble across one of the many blogs of Jay Allen, also known as Zero Boss. One of his many sites includes a daily dose of stories involving parents who should have been sterilized long before reproduction age. If you are ever feeling like you didn't cut it as a parent, check out Parents Behaving Badly -- and you'll have no problem remembering that you may have your faults as a parent, but you're not that bad.

Working Class Hero

Let us pause from the current drama to consider this, which I read in the most recent edition of the Utne magazine:

According to researchers at Harvard University, there are only 5 countries on this planet that do not offer paid time off for new mothers. They are:

1. Papua New Guinea
2. Swaziland (anyone know where this one is????)
3. Lesotho
4. Australia
5. The United States

Yes, we can proudly boast that we are one of the few, the proud, the hypocritical. Our nation rails against anything that people seem to think gets in the way of the "American Family", yet we cannot offer support for families at their earliest moments to ensure success. While the Family Medical Leave Act helps (not just at the beginning, but in moments like the ones the Vampfamily is living in right now), federal law only works to offer protection from losing your job. Unless you work for an amazing company that is forward thinking in their attitudes on this issue (as Vampmommy's company is, I will say!), then the interim period between the big family change and the return to the same job contains much anxiety about financial health.

Some states are moving towards stepping in where the federal government has failed to, and are working towards mandating some sort of paid time off for new moms. However, as a father and not a mom, I was most struck by the article's note that only 27 countries offer paid leave to the father.

What a novel idea -- that dad's time with the kids might be valuable as well? Can you imagine what it would do to strengthen families, and particularly dads, if our nation created policies that actually illustrated the importance of active fathering?

Dare to dream.

Return - The Musical

The song in my mind today -- here performed live by Siouxsie and the Banshees.



"Return"
Wonder where that plane is leading to
Wonder where that boat will ever stop
Wonder if this path I am treading
Will disappear and let me drop
Down to a hell that's surely waiting
Down to the hell I know that I deserve
Even though the spirit is willing
The flesh is blackened to the deepest nerve

When will you learn?
The hurt it will return
When will you ever learn?
This feeling is all you can discern

Oh my heart it is so broken
More than waves upon the golden sand
Fly my love on wings of mute confusion
And never ever land

When will you learn?
When will you ever learn?
This feeling is all you can discern
The hurting always will return

Return return

Choose Your Own Adventure

Vampbaby is back at Chez Healing to deal with the fever and mouth sores. It's amazing how you adapt to situations that seem so terrible -- we made our way to the ER tonight as if it was a trip to the grocery store.

So, while we heal a bit, here's a little game for you. Let's play "Be Vampdaddy for a Day!"

The rules are simple -- you will see below two options that Vampmommy and I had to consider this weekend, and you must pick one. There is no cheating, no way out. And you will be unable to take back your answer. To play, it is best to have a stop watch; preferably one of a nuclear nature that records time to the nanosecond.

There are two objects to the game:

1. After reading the choices before you, see how long it takes before you feel the claws of some terrible demon from Hell grab your heart, rip it to shreds, shove the bloody pulp into your throat, and light it on fire. This is where the ultra-speedy stop watch can come in handy.

2. With the unbearable heat and pain of your broken heart burning through your throat, make your decision.

Sounds like fun, right? Well, here goes....

A part of Vampbaby's treatment includes Radiation Therapy. Radiation is typically not given to children less than three years old, and Vampbaby is a youthful 18 months. However, this cancer is so malignant that it is perscriped as a part of the therapy. So, here are the choices:

A. Do radiation. As a result of this choice, Vampbaby is more likely to survive cancer-free. However, as a trade off, radiating the section of the brain in question will no doubt cause massive damage, leading to certain loss of neurological functioning. At best, Vampbaby will be mentally retarded. At worst, he will spend his cancer-free days in a vegetative state. Either way, he will need full-time, round-the-clock care, and never be able to live indedpendantly. Remember, though -- the chances of him beating cancer are increased (although we do not know how much).

B. Don't do radiation. As a result of this choice, Vampbaby should emerge from treatment in a year with full cognitive functioning; in essence, the Vampbaby we know and love will return, and make quick strides to catch up to his friends in development. However, there is an increased risk that the treatment will fail, and it will be more likely that his cancer would return. If his cancer returns, the liklihood that it could be successfully treated, under today's best treatment options, is slim to none. How much does the risk increase? No one knows. Certainly, kids have survived without radiation. However, some have died without it, and it can't be ruled out that the child might have survived had radiation been done as a part of treatment.

Now, start the timer.

That was fast, wasn't it?

Now, work through the pain and choose -- what would you do?

The Sweetest Sound...

...Is the following, which I heard over the phone this morning when I called to check in on Vampbaby in the hospital:


"HHHHHHHHAAAAAAAAAAAIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII"

Yes, for the first time, my son and I talked on the phone. Sweet. Oh, and he's coming home today -- even sweeter!

Bonus

Well, the second cycle is proving to not be quite as crippling as the first. We're not exactly sure why, but starting out with a full compliment of anti-nausea meads seems to be a possibility. During the first cycle we delayed using one of the drugs because of a risk of side effects (which never came), and catching up with a cycle of the icky-tummy isn't really possible. In contrast, this time has been roughly smooth sailing -- although the coming days will bring the standard fever, low blood levels and breakthrough nausea that are at the heart of Vampbaby's treatment regimen, although the added days of healthy toddler were a bonus we gladly take.

In addition, we have taken time from our "OH MY GOD OUR SON HAS CANCER" phase to continue to marvel at how freakin' cool our son is. Of course, the scars he will now sport on his head and chest from his surgeries will up his rough-and-tumble appearance points to ladies in the future (or perhaps guys -- who are we to assume?). But his continued, persistent cuteness has rubbed off on the hospital nursing staff, who have started a waiting list of sorts to determine who gets to have him as a patient while on duty. The list keeps growing every time we walk by the patient board, and while he's too young (and too focused on his new push car) to understand, Vampmommy and I take it as a compliment -- particularly because I think we can assume that they must think we're okay people as well.

In another show of his unmitigated cool-factor, while traveling to the hospital on Friday with the radio blaring, my little guy went absolutely nuts when a song by Stone Temple Pilots came on. I can't recall that he'd heard them before, but he flailed about, clapping and singing with all of the energy and enthusiasm of their biggest fan. Not bad.

Hate My Way

When I was in 3rd grade my parents signed me up for swimming lessons at the local YMCA. The lessons terrified me -- intimidating instructors, a class full of strangers. My lessons were on a Monday, and my fear and loathing of it made the entire day miserable for me. On several occasions I can recall crying at school, knowing what awaited me at the end of the day. The sight of those paddle boards still brings a chill.

Today is the very same way. Two and a half days of bliss are coming to an end (interesting what constitutes "bliss" when the world around you collapses. It's all relative, for sure!). And, as we prepare to return for the next round, I hate what tomorrow brings. The shadows return just thinking about it.

Change of Plans

The best parenting advice I ever heard was this: "Listen to all of the advise from others, read all of the books -- and then forget all of it, because parenting is about the unexpected." Who knew that, in the chaos of our current situation, a little of the regular parenting advice would ring true?

Tomorrow, Vampbaby is coming home.

Now, before you get your blog-reading panties in a bunch with excitement, let me temper this seemingly good news with a little of the caution that made this a challenging decision for us to make -- and it was indeed our decision. For a variety of reasons I'll leave to science, starting the next chemo cycle needs to be delayed for a couple of days. While my little one is still not "back to normal" (don't count on that for a long, long time), he is well enough that we had the option of bringing him home during the interim. Figuring that it was better to try it out than not (and wonder if we should have), we've decided to partake in the experiment of life outside the hospital walls.

The homecoming will not be any sort of party, however. Vampbaby is still not eating, so he is receiving nutrition (called TPN) through the port in his chest. That will have to continue (which means we have the added treat of making sure that the dog and the baby don't get tangled in the tubing during their reunion), as well as a shot he needs in his leg once a day. The latter will be administered by a visiting nurse, while the TPN will be coordinated by the parental units. Sadly, I bring the experience of working with the same gooey nutrients when Vampmommy was pregnant. I never, ever wanted to hear the sound of that damn pump again....

He is also incredibly weak -- while he was giddy with excitement about putting his shoes on today, he is really unable to walk, and play time lasts about 5 minutes before he needs a break. There is also the issue of his immune system, which is pretty much shot. So no "play dates" with friends, and no hordes of happy visitors. Visitors in small doses are allowed, but no kids, and said guests have to be in perfect health, and have spent their recent history without exposure to anyone who isn't.

While I deferred to Vampmommy in making the decision (after all, I'm at the hospital two days a week -- a lot less than her, and a hell of a lot less than our son), I am left nervous and uneasy about bringing him home. There will be no nursing staff constantly monitoring him, and with that brings a level of anxiety I'm sure will make truly relaxing a bit difficult. But best to get used to the idea now, as eventually we hope to get to a place where returning home is not such a rarity. And, if it turns out to be a bad idea, then at least we'll have discovered that sooner rather than later.

The experiment will be short lived, however -- as Vampbaby will return to the hospital on Friday to start the next round of chemo, and another 2+ weeks in Chez Healing.

Another Day

Well, it's been another week of "Fun with Side Effects". I won't get into them here, since you might be eating while you read, but let it be said that the treatment for Vampbaby's cancer is brutal, brutal, brutal. We have now been in the hospital for 3 weeks, and there is likely 2 more to go before going home is even an option. Of course, we are also beginning to accept the reality that Vampbaby's homecoming could be delayed until treatment ends -- a year from now.

However, this weekend has brought the final phase of the chemo cycle upon us: rebound. For the first time in three weeks, my son today sat in my arms, played with a new toy and laughed. He voice is horse from weeks worth of crying, and what can only be described as the worst sore throat EVER (Thanks, Hybermucosa!), but the sound of his giggle flew through the air like a light in the darkness. He even ate some grapes -- nothing short of a miracle.

All of this is cause to celebrate, for within these moments I have seen the fire return to my son's eyes that has always taken our breath away. It will, sadly, be short lived, as he will begin his next chemo cycle early next week and return to the murky world of illness. But for today, I am seeing Vampbaby as he was, and hopefully will be.

2AM

I wake up, hearing the roar of the air conditioner, and feeling Vampbaby sleeping against my back. I don't open my eyes - even the most subtle movement will send the dog bounding onto my stomach, eagerly awaiting early morning human contact and breakfast. Instead, I keep still and contemplate the day's routine. The moment Vampbaby awakens, he will seek the dog with and excited "Etch, etch!", then turn his attention to getting out of bed by crawling over any obstacle in his way (usually me). Then it's a mad dash to the stairs, with wailing to commence at the security gate. The knashing of teeth and pulling of hair ends when I drag myself out of bed, pick him up, and head downstairs.

Vampbaby is plopped in the highchair, and Vampdoggy is fed his morning doggy bits. A quick bowl of Cheerios and soy milk later and Vampbaby is eating his own breakfast (all the while completing the dog's meal with some of his own). Then it's back up stairs to dress and prepare for the day.

What day is it now? If it's a work day, then Vampbaby will race off to school for another day of fun with friends -- perhaps swimming in the kiddie pool, perhaps eating pizza, but most certainly making a mess and wearing himself out. Vampmommy and Vampdaddy will dawn their fashionable outfits and head off for fabulous days at their fantastic jobs. If it's the weekend, then we're off to the errands of the day -- groceries, a trip to the mall, visits with family, the occasional trip to the town playground, and perhaps a nap in the car.

I open my eyes to greet the day.

It's night. The room is illuminated not by the usual blue nightlight, but instead by the machine that is pumping a vast array of drugs into my son's system, that earlier gave him a transfusion of blood. That sound is not the air conditioner; instead, it is the cooler unit that chills the blanket Vampbaby is sleeping on, as a way to combat his 102 degree fever. The nurse slips quietly in, adds a new medication to the machine, and slips quietly out into the bright hallway of the hospital.

I remember, yet I still want so badly to forget.

Return

Taking a break from the insanity of it all is critical for the self-care of any parent, let alone one dealing with this...However, walking away, even for a couple of days, does come at a price -- which is paid when you return.

Vampdaddy is back in Chez Healing for the weekend, while Vampmommy takes a much-deserved break. Vampbaby continues to struggle -- now with dropping blood and sodium levels as a result of the treatments. This means he is very tired and weak, prone to infection, and other such unpleasantness that they need to get under control. There is no doubt that he's in for at least another week.

I come back to see my little guy melted in his mother's arms, looking quite pale. His eyes communicate his tired state, and his hair has started to thin. The bandage from the area where they put in his Omaya Line (the access port in his head) has also fallen away, revealing a shaved swath and a u-shaped scar. We are currently trying to figure out if the scar will be above his hairline or below it (grrrr....). All of this breaks my heart once again, as I work to dismiss the guilt of not being around him these past few days as he has struggled to feel well again.

But I am here now, and together we will get through this weekend. Visitors are expected that will certainly lighten the mood, and on Sunday night Vampmommy will make her return.

So it goes.

Vamp Mix

I love music...My CD collection, which spans an entire section of our loft space, boasts a considerable expanse of music, from the commonly known to the rare to the oddball. One of my first goals as a parent was to raise a child as hooked on music as I am, so one of my greatest joys is to watch Vampbaby bounce and dance when a CD goes in the stereo.

To date myself a bit, my expansive CD collection used to be a decent size tape collection, and with it came the addictive habit of mix tapes. The perfect way to capture a mood, moment or sentiment, mix tapes were my way of communicating with the outside world. As the technology changed, my mixing moved to mix CDs, but the idea is the same: if my life were a musical, these songs would be playing at this moment.

Most of the time my mixes were for others, but once in awhile I'd throw one together for myself, relieving me of the burden of having to "journal" about some drama in my life.

Well, here we are in the midst of the biggest drama EVER -- so a mix is warranted. Of course, in keeping with the times, I have made no "CD", opting instead to create the mix on my trusty Ipod. So, I give you my latest mix, which I have titled "Induction":

1. Hide and Seek - Imogen Heap
2. Lullaby in Three/Four - Erin McKeown
3. Elysium - Lisa Gerrard
4. All is Full of Love - Bjork
5. Silent Spring - Massive Attack with Elizabeth Fraser
6. Mole - The Mountain Goats
7. Disenchanted - Everything but the Girl
8. Another Moment - Tanya Donnelly
9. Mandy Goes to Med School - The Dresden Dolls
10. The Best Man's Fall - Trashcan Sinatras
11. Lullaby - David Gray
12. 1000 Oceans - Tori Amos
13. Sing - The Dresden Dolls
14. North Atlantic Sand - Don Peris with Karen Peris
15. We Walk the Same Line - Everything But the Girl
16. It's Not Up to You - Bjork
17. Precious - Depeche Mode
18. I Will See You in Far Off Places - Morrissey
19. Moon Over Boston - Tanya Donnelly
20. Shine - David Gray
21. Hymn for the Fallen (Live) - Dead can Dance
22. Ooh Child (Alternative Mix) - Beth Orton

Perhaps you have these tunes in your collection. Or, perhaps you'll search for them and go insane trying to figure out where I got them. I can say that they are all available somewhere legitimate, if you look around! In any event, take a listen in my ears....

The Others

Vampdaddy has returned from the land of tubes and medicine, to the world that we used to call our own before this all began. Vampbaby is struggling with eating (a lack of) and nausea (too much of), so he and Vampmommy remain at the hospital. However, it is time to implement "the plan", which includes me doing what I can to return and remain with some consistency at work, while Vampmommy dawns her Super-Parent Suit and works on the front-lines in the battle. In the scope of the 51-week treatment protocol, we have completed week's one and two, with week three's chemo treatment scheduled for next Tuesday. In between we will begin dealing with the many side effects that come with chemotherapy (beyond the eating and puking part -- but wait, there's MORE!), so while there is the hope that Vampbaby will return home for a spirited reunion with Vampdoggy, we are potentially preparing for a longer residence in "Chez Healing".

While in the hospital, we did have the pleasure of meeting The Others. The Others are the only other family in the area being treated at the same hospital for the same cancer (one other child is being treated elsewhere). Othergirl is 2 years old, and was diagnosed just a few weeks earlier than Vampbaby. While every child responds to treatment differently, seeing Othergirl a few weeks ahead of Vampbaby in treatment has given us a snapshot of what is potentially to come -- hence our preperations for much, much more time in the hospital than what is "scheduled" in advance. Otherdad and Othermom are lovely people, and we relished the opportunity to talk with someone going through exactly what we are -- even though their struggle is made more acute by having a total of 4 children. And I thought coordinating support for Vampdoggy and the fishes was stressful....

When you consider that this disease is so incredibly rare, to have another family going through this trauma at the same time is something of a spooky coincidence. But, it does not stop there: the doctor who first saw our son on Father's Day, who had the Emergency Room do the first CT scan that showed the tumor?

He is the next door neighbor to the Others.

What are the odds?

The universe deals you shit, yet the cosmos comes finds at least a shred of mercy with connections that work to move you through it. You will not find this blog being a central hub of any organized religious doctrine (not our cup of tea), but that's quite something....

The Letter: Part One

Dear Vampbaby;

I remember, as many parents do, those first days when I held your little body in my arms, and the warmth of your breath against my neck as you slept peacefully on my chest. Along with the feelings of overwhelming love that I never thought possible, I recall my ringing commitment to love, protect and guide you through the complexities of life on this here rock we call Earth.

Well, I am writing to apologize for the "protect" part. While many parents have the luxury of waiting until the first day of elementary school, or some time during the tumultous adolescent years, your mom and I have had to learn much sooner than most that we are powerless to protect you when it comes to some things -- cancer being one of them.

So, I'm sorry:

Sorry that you are hurting so, and that I know this hurting will last a long, long time;

Sorry that I cannot stop the onslaught of poisons that are being put into your system, making you so ill;

Sorry that I cannot take away the pain of each needle stick, each mouth sore, each head and muscle ache that will occupy your days;

Sorry that I was unable to stop this nasty disease from getting to you;

Sorry that everything now tastes like shit;

Sorry that your entire day today was spent with brief moments of calm between long bouts of crying;

Sorry that I cannot explain to you why this is happening, yet expecting and hoping that you will put up with it;

Sorry that your mom and I have had to make the decision to have you treated, knowing that you will face a lifetime of difficulties as a result;

Sorry that we have taken you from your friends at school, the people that used to fill your days with fun and laughter, and replaced them with people in white coats and kitten-adorned medical smocks (although, they are great people in their own way);

Lastly, I am sorry that there are going to be many days when I will not be here to hold your hand and wipe your tears, because there is a complicated world that we are a part of and at least one of your parents has to deal with it from time to time.

I hope one day you understand that your mother and your dad love you to the end of the universe and back again, and for that reason made the decision to go through with this process. We are hurting in our own way, but are doing all of this so that one day, you will be around to read this letter and understand a little about what happened to you "way back when" and why we made the decisions that we made. And even though we can't take away the pain and suffering that we realize is quickly going to become part of your daily life, we will do what we can to see you through.

Love,
Dad

A Day Called Zero

Author's Note: So, I was toying with a new look to the Vampdaddy page....And although I don't recall republishing it with the new template, apparently I did. In doing so, all of my links vanished, including all of the great dad sites I want to make sure my readers check out! So, give me a few days and I'll get them back in place.

We now return you to our regularly scheduled blog post.

The big day arrived with a flurry of activity -- about a dozen people, including three different doctors, coordinating the symphony of surgery that began our journey through Cancer treatment. Vampbaby was sleeping like -- well, you know -- for about 4 and a half hours, in which time the access lines were inserted (in his head and chest), and an echocardiogram was done. Also, in a surprise move of scheduling wizardry by Vampbaby's doctor, his first Chemotherapy dose was administered.

Vampbaby continues his trip in la-la-land, thanks to an amazing amount of sedation coupled with the various chemo and anti-nausea drugs that are flowing through his little body. We may begin to see the effects of his first chemo treatments (he will have more overnight) in the coming days, and the fun REALLY begins. In the meantime, we are settling into the 51-week (or more) journey towards remission.

Vampmommy and I are taking all of this in stride -- largely because there isn't much else we can do, and a complicated treatment like this on such a little lad requires our focus and attention. Our main goal as we begin, aside from keeping him alive, is to do what we can to ensure that the essence of Vampbaby, his boundless energy, contagious laugh and utter cuteness remains intact. As we watched him proudly march himself to the mailbox and fill it with outgoing mail before we left home (to which he gave himself a rousing "standing o" for the achievement), we both saw clearly the boy we want to save, and the moments we want so desperately to have more of for years to come.

Before I depart for an evening of sleep, I want to also honor the growing support that continues to come our way. There are no words that could actually capture our gratitude, but I hope each and every one of you feel the love returned that you have sent to the Vampfamily. Because a number of people have requested it, I will post that a fund has been set up to assist with expenses related to Vampbaby's treatment. For more information, you can email jackiecdp@aol.com .

Vampdaddy-Hunters

Sorry for the "sounds of silence" these past few days...I know that many have been asking, "Where is Vampdaddy?" Well, here I am, and without the red and white striped "Waldo" attire. Trust me, I don't look good in horizontal stripes. Although I'd probably be cute in the hat...

But I digress. Truth is, the last few days have been extremely busy, and the urge to log on and scribble has eluded me in favor of connections with friends and family, a little Vampmommy photo project, and some personal maintenance for mental and physical health in preparation for what is to come. Oh, and Vampbaby has continued his new habit of picking up things and throwing them across the room -- with wonderfully breakable results!

What has come this week thus far is tweaking of Vampbaby's treatment schedule. Rather then entering the hospital today as planned, there was another day of visits -- this time to meet with the various doctors, techs, nurses and other folk who will be coordinating the surgery to insert the access lines in his head and chest for chemo. This surgery has been pushed to Wednesday, and an additional day-trip to the city has been scheduled for Tuesday to test his bone marrow.

Today we also met with the Doctor who will be coordinating the treatment, to go over the protocol in every gory detail. Any lingering thought that we may pass through this with only the hair loss to deal with quickly evaporated in favor of more unpleasant side effects that occupy our thoughts and fears at the moment: permanent sterility (an almost guarantee - since our future children will enter our world through adoption, this news constitutes the end of "The Vampdaddy Line" from a genetic standpoint), mouth sores (making it too painful to eat or drink anything), heart weakness (possibly permanent) - need I go on? Of course, none of this includes the potential side effects from any radiation therapy he may receive on top of his chemo -- although the specific decisions on that plan are yet to be determined. Given the alternative, we accept these and other side effects without any hesitation. But as parents, it is difficult to fathom the price we are asking our little one to pay at a time when he can neither understand nor participate in these choices.

So, a couple more days to wade through before the real work begins. In the meantime, we are preparing for our first chemo-related hospital stay, putting our house in order (literally and figuratively), and once again sitting in stunned amazement at the generosity of the community that is supporting us into this difficult time.

On a lighter note...Readers new to the site should be aware that I began this blog to muse on fatherhood -- prior to this new twist on parenting ("The NEW Vampdaddy -- now with CANCER!"). While I hope (and plan) to return to posts that allow me to pontificate on the joys of Dadness-Without-Disease, the current situation has me clearly in another realm. So, I encourage you to check out my links to other parenting blogs by some of the greatest guys on the net. It is these dads that inspired me to set up my own page, and their blogs are full of wit and brilliance. You'll also find links to other ephemera...if you dare...

Harsh Realm

What can I say that can paint a picture of what we've begun? Today, Vampbaby was stabbed with a needle about eight times. Babies in general are "tricky sticks", but our son has inherited his mommy's veins. Of course, two weeks worth of IV's hasn't helped, either. This is usually all solved thanks to the marvelous technology that is the Portacath, but that doesn't go in until next week. Until then, the nurses just shake their heads in woe and begin the litany of apologies for making my son scream like a banshee.

After the sticking, there's the waiting. Blood draws every hour for three hours. Sticks with needles in between. Calm shattered by screaming and crying -- but wait, was that Vampbaby or me -- then back to aimless wandering around the hospital, waiting for the next test. We had some musical entertainment at one point, which Vampbaby danced to like the best Solid Gold Dancer ever (hip sway and all!). But the rest of the day was spent waiting, or crying, or crying about waiting.

Then the day ends with a failed echocardiogram, because it never dawned on anyone that you might need to sedate a 16 month-old to conduct an hour-long ultrasound study of his heart. Note for next time (which is tomorrow), but in the meantime there were several hours wasted for nothing but a few moments with Vampbaby covered in ultrasound goo.

Let it go, fight traffic, get home, pet dog, eat.

Now, sleep. There's about 365 days just like this ahead.

This is a Test...

As I type, Vampbaby is asleep, and Vampmommy and I are preparing for our first week in active cancer-treatment mode, with 5 days of testing that will lay the foundation for the beginning of chemotherapy. Here's the "week-at-a-glance":

Monday:
6am - Leave for Boston
10am - MRI. Vampbaby to be sedated for procedure
10:05am - Vampymommy and I get oriented to the hospital where we will spend most of the next year. Find the nearest Starbucks.
12pm - Vampbaby awakens, hungry from a lack of food due to sedation. Revenous gorging ensues.
1pm - Done for the day. Visit Ronald McDonald House, where we will spend the first of many nights during this process. Finally accept that, while I don't believe in their food practices, I'll happily take their affordable housing and support for families with children being treated for cancer. Follow move-in with reminiscent wandering throughout our favorite city, regailing Vampbaby with stories from our college days.

Tuesday:
8:15am - GSR (Kidney Test). Vampbaby is injected with a "tracer". Blood is drawn at 1, 2 and 3 hours after injection to see how his kidneys function.
4pm - Echocardiogram. Vampbaby dances to the beat of his own heart.
5pm - Go eat, since driving home at that hour from Boston makes no sense.
6pm - It makes sense now...Drive home, reunite with Vampdoggy.

Wednesday:
8am - Stuff Vampbaby with as much food and drink as possible, since as of 8:01 he is no longer allowed sustenance until day's procedures are over.
12pm - CT scan and Lumbar Puncture (Spinal Tap). Once again, Vampbaby is chemically induced into la-la-land while they drive a needle the size of a railroad spike into his back (it's probably not that big, but I imagine it's just as unpleasant).
2pm - Vampbaby emerges and eats most of the shops on Newbury Street. We return home before anyone is the wiser

Thursday:
10am - CSF Flow Study. Something is put in Vampbaby's spinal fluid (how, I don't know -- nor do I want to). Images are then taken at intervals throughout the day to see how his spinal fluid flows through his body. This is to determine whether or not he'll need an Omaya Line inserted - which would create an access line through his skull into the spinal fluid in the brain for chemotherapy.
3pm - Home again, to spend a quiet afternoon in our new garden (lovingly created by Vampmommy's co-workers this weekend...THANK YOU!).

Friday:
8am - Knowing that it's a light day on the cancer-treatment front, Vampdaddy goes to work in an effort to maintain both personal and professional sanity.
10am- Vampmommy and Vampbaby return to Boston for one last Image in the CSF study.
12pm - The week of testing over, provided he's up to it, Vampbaby spends the afternoon back at home, or visiting friends at school/daycare. Vampmommy attempts a return to the office.

In there somewhere will also be a hearing test, where Vampbaby will illustrate his uncanny ability to hear you and yet choose NOT to respond.

All of this will lead to the BIG DAY:
Monday, July 17th:
TBA - Vampbaby returns to Boston. Surgery to insert Portacath (permanent line in his chest for chemo) and potentially the aforementioned Omaya line. A week-long hospital stay and the first wave of intensive Chemotherapy commences.


And away we go....

The Cliff

Many moons ago I used to direct a youth program that included a summer camp. I had a co-worker who referred to the evening meetings we'd have with the program co-directors as the "Big Fat Meeting". Well, our "Honkin'-Freakin' HUGE Meeting" took place yesterday in Boston, and the plan is in place for Vampbaby's treatment.

The good news -- well, very little. This is going to suck on many levels. First off, this might as well be some freakish disease that emerged from a recently demolished Rain Forest. No cancer in children is treated like this one is, and since so few children get it there's only a tiny, tiny handful of families who have experienced what we are about to. So, if you have any preconceived notions of what cancer treatment looks like in a 16-month old, throw it out.

Second, other than the actual treatment protocol (what is done when) there is no understood pattern for how it will go. My son has surpassed all others thus far with the success of his surgery, but that doesn't mean anything in terms of how he will respond to the intense treatment that will occupy his (and our) life for at least the next year. He could respond with similar resiliency, and whip this cancer easily without so much as a sniffle. Or, we could fight a terrible, horrible battle for many months, and still bear witness to the unthinkable. Or, we could be somewhere in between those two extremes -- but there is no way to know for sure until we are actually there.

So, the questions of scale and reality set in....How will we do this? Will one of us have to leave our jobs, or at the very least take a ton of unpaid time off? What about daycare -- is it feasible that a patient going through this kind of treatment will be well enough to be in daycare once in awhile? Will insurance cover this treatment? What other expenses will emerge, and how will we pay for them? How do we maintain a sense of routine and normal surroundings for a child that is about to enter the "Cancer Treatment X-Files" and spend the majority of his treatment time in a different city than where we live? And, of course, the biggest question:

"How the fuck can this be happening to us?"

That one rang through my head like a siren as I wandered the waiting room yesterday. I was surrounded by families, all of whom seemed resolute in their determination to fight their child's cancer. All of them, including the children, chatted and wandered about the clinic as if this was nothing more than a routine physical. Mother's who initially ran into one another while their kids were in the hospital reconnected and shared updates on their child's prognosis like soup recipes. One young boy even took ten minutes to educate me on various IV access techniques and what to do if Vampbaby's blood counts drop.

I'm sure one day we'll get to that place...But not today. Today, I don't want to go there. I don't want to be "one of those families". And yet, we are, and we must accept all of the things that come with it, good and bad, as the sum total of the experience that is our new reality. Today, we are back to the haze of shock, grief, disbelief, and fear of the unknown.

This is Not my Beautiful House.....

The last few days have been quiet around these here blog parts, eh? Well, it's been quiet in the real world as well. With the meeting set, all we have to do is hurry up and wait until we have an opportunity to get the last of our questions answered (at least the ones that plague our thoughts at the moment). Vampbaby is as energetic as ever, so we've spent plenty of time at the petting zoo and in the garden, where he's taken a shine to digging in the dirt and pouring cold water from the hose on himself. Vampmommy and I also got a day away, while the little one spent quality time with a grand-parental unit.

These moments of normalcy have been a welcome relief, and have hopefully allowed us to restore resources that we know will be needed when the treatment begins. Of course, in those moments, the reality does tend to creep in and remind you that all is indeed not well. I spent some time at my office yesterday, getting caught up on phone calls and emails while beginning preperations for the inevitable schedule juggling that will most likely commence sooner than I am prepared for. As I was gliding easily through my routine, I was struck suddenly with an odd observation about my desk -- it wasn't my desk. No, this desk belongs to a guy who is not the parent of a cancer patient. The kid in the photo on the wall -- that is a kid without cancer. And the plant -- again, not my plant, but a plant owned and watered by the old me. I shuddered, wonder briefly if I should re-arrange my office or some other symbolic gesture, and resolved to return to the routine of my old self, remembering that it is still a part of me (and must continue to be to maintain my sanity).

I hope everyone out there had a happy 4th of July - whether or not you happen to live in the US and recognize it as a holiday!

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.

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?

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

Tomorrow

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.