Amusement

In the midst of it all -- a day of normality! The clinic Vampboy is treated at held a summer festival for current and former patients and their families. VB had a few joyous firsts today: First kiddie-ferris wheel ride, first merry-go-round ride, and first ride on a pirate boat swing (above). It moved much faster that it looked, and I wasn't sure which one of us was going to make it without losing our lunch (I don't do amusement park rides very well). In the end, lunch stayed intact, and a perfect day was had by the Vampfamily.

I'll take it.

Killing Time

The allure of the vampire, as with many supernatural, mythical beasts, is it's inherent ability to cheat death. While the cost of cheating death has proven a high price in folklore and fiction, we are still drawn to the existential question: will I ever reach a point when I'm "ready to die"? If I could, would I choose immortality for myself, knowing that I will watch as those I love do not? What if we could all live forever -- wouldn't that be great? Could I adjust to blood drinking from a vegetarian diet?

From these death-defying archetypes to the modern science of cryogenics (or, as some would say, "pseudo-science"), all of us must ponder our mortality at some point. Of course, most try everything they can to avoid the overwhelming truth that their very existence will one day end. We take solace in our adolescent indestructibility, or our religious faith that says death is a non-issue, with another form of life awaiting all of us on the other side.

I have been reading blogs of late written by people with cancer. As adults with the disease, they process for themselves what the inevitable reality is for their circumstance. While some fight long and hard for ultimate victory without exception, others wage the war with the understanding that, at some point, they will lose. The luxury of denying one's own mortality is lost to them, and the game of "if you had only one year to live..." isn't just a question to open an evening of entertaining philosophical discussion.

As parents, we battle to live in the same denial about our children. Certainly, the reality is that most parents will never face the loss of a child. But many with their own children have commented to me that they take an extra moment to love and hug their child, knowing that I am sharing the experience of a parent who may not fit in the "most parent category".

All I want is for this to all end. I want the last dose of chemo to enter into Vampboy, and then I want us to walk away from this chapter, as closing credits role to a rousing Oscar-worthy song. I want to stop filling these entries with the lastest in "doesn't this suck news" and turn my attention to the funny thing VB did on the way to school, or my take on the current Lindsay Lohan scandal (poor girl).

Yet, it is not that easy. For the medical team and researchers working on VB's case, we are an anomaly -- parents who are interested in what the research studies are saying, whether good or bad. At our quarterly "team meeting" with them this week, the conversation was mixed. While we revel in the latest clean MRI scan, and the sense that the follow-up scan scheduled after his last treatment cycle will also be good, the future is uncertain. There are 18 patients in the research study VB is a part of. Of the 18, 10 have completed treatment. Of the 10, 4 0r 5 have had their cancer return. With no "plan b" treatment options available, the fate of those 4 or 5 are certain. The rest? Well, very few of them are far enough away from treatment to say they are "out of the woods", but those that are will still have years and months of waiting and wonders, as the first long-term survivors of this disease.

Success means very little when dealing with a cancer such as this. Granted, as someone who looks at "risk" and "protective" factors, it appears to me that VB has a lot going for him other kids haven't: his tumor was small, the surgery to take it out left nothing visible behind, and while on treatment he's never once had a scan show any sign of re-growth. Yet, the medical establishment doesn't rest on that. They've seen equally good scenarios turn out bad -- and they've seen worse scenarios turn out better. So, they don't give any room for optimism, with the fear I'm sure that they'll have parents who feal mislead should things not turn out right. My requests for a glimpse of hypothetical prognosis, based on the context of VB's history to date, go unanswered.

What is known is that, with 2 exceptions, this cancer returns (if its going to) within the first two years after treatment. That's why VB will have MRI's every 3 months for year one, and then every 6 months for year two. Other than that, life can return to normal -- but how realistic is that?

To put this into brutal perspective....VB's first MRI after 3 months of no treatment will be in January. If that MRI were to come back with bad news, we may only have months -- if that.

So, we grapple once again with the fact we no longer have the luxury of other parents -- who plan and envision their little toddler heading off to school, or joining an anarchist artist colony. We don't have time for that. If there are things we want VB to experience and do in this world, we need to be prepared to do them soon -- with the hope that we can check off that list and create a new one as he defies the odds and lives to be 130. And, we feel the additional weight of understanding that comes with the fact that, even if daily treatments and trips to Boston end, the war does not.

None of us really know what tomorrow brings -- or if there will be one for us or our loved ones. So we fake it -- but what if you couldn't?

Freedom

"Free of disease."

That was the reading on Vampboy's MRI scan today. Even though each visit to the big picture machine could change everything for the worse, we're far enough into treatment when even his doctors don't present with the same anxiety as before. In my mind this will change, when that day comes 3 months after treatment ends, and our little one slips under the radar again for a picture of what takes place when no arsenal of chemotherapy is marching around. That will no doubt be a very, VERY stressful day.

Which makes me wonder how free we, or anyone else who deals with cancer, can ever be from this disease. VM and I have started dreaming again -- about the future, about the possibility of being able to make plans beyond what to do in the next hour. As someone who spends a great deal of energy living in the "here and now", envisioning long-term future is a stretch for me. Cancer only complicates that. It is remarkable the level of your life even a history of disease can impact. It would be one thing if its influence over our future was by our choosing, but sadly there will always be places where VB's cancer battle will rule the day (read: health insurance premiums, special education needs, etc.).

And -- not to be morbid here -- how much to we factor in the very real possibility that we could one day be here again? Remember, what VB has is very, very nasty, and known to return without warning. Several of the drugs he's taking to fight the cancer can actually CAUSE other types of cancer. It seems like looking ahead based on MRI results like today's might be a little naive.

I know I've mentioned this issue here before in various ways, but it is a complicated one without easy answers. I welcome your opinions. We will certainly be seeking and welcoming guidance as we move into the end of treatment and the beginning of......

Stop the Insanity!

We are delayed...AGAIN. Vampboy was supposed to start chemo on Tuesday, but was delayed because his immune counts (called "ANC") weren't high enough, and neither were his platelets. So, we go through the complex process of getting him, Vampmommy, and his cadre of drugs and other supplies into the car for a trip to Boston this morning, only to discover upon arriving that today's lab work shows his ANC is fine, but his platelets are too low -- the count being 72.

It needs to be 75 to start. 3 points off, and we're now in a holding pattern until Monday. That is, provided that his ANC doesn't drop below 1000, which it could. If that happens...Tuesday? Wednesday? Of course, that also means that the calendar pushes forward, so our end date now looms a week longer away.

To add to the angst this causes is the fact that we are now on "bonus time". Had there been no delays, and no additional chemo that came with radiation, we'd be done this week. That was never going to happen, as that's now how chemo works, but it adds just enough salt to the soul's wound to sting.

On the bright side, I'm hoping I can carve out a little date-time with VM this weekend, since VB will be in good health and able to hang out with a loving family member for awhile. We'll squeeze some lemonade from this rotten lemon yet!

The Long Way Down

Hey -- remember me? I think I used to blog here or something. Let's play catch-up.

The Pain that I'm Used To
The MICKEY button issue seems to be resolved, after a few days of extreme pain ("Mickey hurt my tummy" became the big catch phrase) and a fever send VB back into the hospital, where he remained for several days. This time, however, the various teams and departments followed our rather angry feedback from the previous visit -- which showed in their clear communication amongst themselves and their overly-routine check-ins on Vampboy. In the end, the combination of VB having a weak immune system and the rather unpleasant procedure that but the button back in place conspired to bring us back to the "frequent flyer" level at Chez Healing.

On and On
I have come to the conclusion that the last 4 cycles of this treatment regimen are cancer's last-ditch effort to mess with our heads. Between this past cycle, which saw way too much time in the hospital, and the fact that we're delayed from starting the next cycle until the end of this week (if we're lucky) life returned to a level of testing both our patience and our mental and emotional strength. Granted, Vampboy looks great and is in equally good spirits, but after so long it doesn't take much to wear one down.

9 to 5
Through this whole ordeal I've continued to work. Being a working parent is always hard, but to be one while your child is sick and your spouse has given up their job to care for him, brings a special level of challenge. When I returned to work after Vamboy's surgery and diagnosis, one of the first things I did was remove photos of VB from my office. There was no way I'd be able to concentrate otherwise. I did keep one -- his school photo, taken a few months before he was diagnosed. It's not in a place I can see directly while sitting at my computer, so I decided to leave it. The longest I've been able to look at it is 10 seconds (and yes, I did time myself once).

Days packed with meetings are the easiest, as other people and active conversation make for good distraction. However, days spent in front of the computer, whether writing grants, answering email, or completing reports, are the hardest to stay focused for. Summer usually brings more days like that, and this one is no exception. I wonder if these days will get easier when we return to a more "normal" life.

Back to the Start
Vampmommy met with VB's daycare to arrange for -- who would have believed - his return to school sometime in November. Next week we'll meet with VB's doctors (after the next all-important MRI) to talk about what the end actually looks like: how long do the ports stay in, and when can we get rid of this DAMN MICKEY BUTTON ?!?! Dare I think that the end of this dark time may be near?

That should feed your need for knowledge -- I promise I'll be back sooner!

The Ripley in Us

Parents are meant to protect their children. Many discover this drive early in their parenting, which leads them to do things that once they never thought they could do. If you're naturally the kind of person who can claw the eyes out of someone who crosses you, then this instinct is easy to handle. On the other hand, if you're like me (i.e.: someone who would eat a meal served to him at a restaurant, even if it's not what you ordered, just to prevent causing a stir) this can prove an uncomfortable and challenging role.

That's why I'm lucky to have Vampmommy. Not that she enjoys opening up a can of parental whoop-ass, but when you're dealing with the complexities and idiocies of the medical establishment, this skill is a vital tool -- as the past two days has shown.

Really, the whole mess of getting VB's MICKEY button replaced boiled down to two hospital departments that made decisions based on information they didn't have (they hadn't even seen my son), and never communicated with one another on the nature of the procedure that needed to be done to fix the problem. In the end, 24 hours was wasted sitting around watching Vampboy not eat, while Vampmommy had to use her limited emotional resources to set everyone straight and keep people doing the jobs they should have done all along.

In a metaphorical sense, it looked something like this:



Yes, every parent reaches a place where they must done a one-ton robotic lift suit and pound evil into oblivion. When you're finished, you are satisfied that you did your duty as a parent. It doesn't feel good necessarily, but it comes with the territory.

And Vampboy? In this case, we got what we needed, and VB is now at home with a slightly sore tummy, but a brand new MICKEY. Meanwhile, patient services will be in touch with a few key people to ensure the tomfoolery of the past 48 hours doesn't happen again.

Sunday Icky Sunday

Sunday's are the day reserved for errands and catch-up at the Vamp-lair. VM took the day off to be creative and recharge, so after some time at the gym this morning I took Vampboy around town to shop for food and other such delights.

He was a bit whiny for most of it, but when we returned home he seemed to perk up and turn into his playful self. He was particularly smitten with the family of Morning Doves that has nested in a potted plant outside on our bedroom deck. Tonight, the parent birds flew away long enough for us to spy two babies sitting quietly in the nest. Since we could see them from the bed, we climbed up into bed as a family, watched the momma bird (or was it daddy?) return, and sang Vampboy's greatest hit, "3 little monkeys".

Then, as Vampmommy was sitting up to take VB into her arms, I saw it lying innocently on the bed:

Vampboy's MICKEY Button.

There was a brief moment of surprise and panic - after all, while we knew this little device was replaced every so often, this seemed a little too soon and too sudden. Since it's supposed to be like changing an earring, replacement seemed simple enough. But, since we had never done it before, we took VB to our local ER to get a tutorial....

...A tutorial from HELL, that is. You see, much like an earring hole, the opening the MICKEY fits in will close up if left open for awhile. In most cases (at least by what we're told), it's 6 hours before you'd have a problem getting a new button in. Of course, we're not most people - and karma obviously isn't finished screwing with our heads. The simple demonstration turned into an hour and a half of screaming , as the doctor tried in vain to get a new button in. He never succeeded, so after consulting with our usual team of medical misfits, as I type Vampmommy is making a midnight ride to Chez Healing.

It looks as though Vampboy's stoma (that's the not-so-fancy term for the hole the button went in ) started to close up almost immediately. To fix it, they'll most likely have to put a PEG back in (that is the tube he used to have before, that we had to tape to his stomach to keep from dragging on the ground), and then assess when and if a button makes sense. This is all complicated by the fact that he is most likely in need of a platelet transfusion at this point, and is also reaching the place in his chemo cycle where he's an increased risk of infection.
So, I'm waiting for laundry to finish so I can pack up a bag of clothes and such to be brought down to Chez Healing tomorrow. More news as it develops.

And here I was thinking that I didn't have much to write about this past week. The last few hours certainly made up for that!