Tuesday, August 29, 2006

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.

Monday, August 28, 2006

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.

Wednesday, August 23, 2006

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.

Tuesday, August 22, 2006

Return - The Musical

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

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

Sunday, August 20, 2006

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?

Tuesday, August 15, 2006

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:


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

Sunday, August 13, 2006


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.

Thursday, August 10, 2006

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.

Monday, August 07, 2006

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.

Saturday, August 05, 2006

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.