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!