Tuesday, September 26, 2006

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.

Tuesday, September 12, 2006

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.

Thursday, September 07, 2006

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.

Wednesday, September 06, 2006

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.