Tuesday, October 31, 2006

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.

Monday, October 16, 2006

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....

Tuesday, October 10, 2006


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.

Monday, October 09, 2006


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.

Monday, October 02, 2006

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.

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.

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.

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

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.

8pm meds...again!

Didn't I just do this?

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