Sunday, December 31, 2006

What are you doing....

New Year's Eve -- I seem to remember some very fond memories of this night in my past....

1. One year while in High School, I spent my New Year's Eve rewinding all of my tapes (and I had a lot of them) to the beginning of side 1. What a better way to start the new year than right at the beginning? Yes, I am clearly a child of the 80's. Other years I would spend with one of my best friend's family, and my friend and I would sit in the corner and feast our eyes on the oddities of her clan. This included one woman who considered herself a "psychic stripper". Fortunately I never had the chance to see her at work....

2. During several years of college, I would have friends from out of town visit me in Boston for the annual First Night. I think we did First Night festivities once, before realizing that there's only so many ice sculptures, bad theatre and fireworks you can stand when it's 30 degrees below zero. The latter years were spent with a good home-cooked feast, as well as the never-ending saga of a friend who seemed to get hit on by some wacko every time she set foot in the city for the holiday. This included my favorite, when a man approached her in the dairy isle at the store while we were buying the fixings for our New Year's Eve dinner, and offered to smear her body with clam dip. She thankfully declined.

Those years are far behind, and even the concept of marking the occasion right now seems meaningless. But here I sit, hours before this ugly year transitions into one of equal unpleasantness. Vampmommy's parent's are entertaining Vampboy after a little dinner, and hopefully soon he'll be off to sleepy-land so I can celebrate the holiday by dawning a surgical mask and gloves and giving him his chemo. In the meantime, I thought I'd provide you all with a little update.

We did spend the holidays at home -- these current chemo cycles have proven easy to handle, meaning that Vampboy regained a great deal of himself these past few weeks. He's eating, babbling, walking, and proving to be the model for your average toddler on the cusp of 2 years old -- tantrums and all. Conveniently a stomach bug (at least that's what we think it was) got him out of his frantic feasting, so we've continued to feed him through his tube and clean up the occasional vomit.

In some ways, however, having this "vacation" from the past six months of illness and drudgery is not as easy or relaxing as one would think. For one thing, he has all of his energy back, yet is not in a condition where we can just toss him back in school. For someone who is not a "stay at home kid" to be stuck at home has proven incredibly demanding on my wife and I. There is then the decrease in adrenaline and the lack of "day-to-day" drama -- which gives us ample time to take a deep breath, and survey the vast swath of destruction that has become our life. For the first time since June Vampmommy and I have had a chance to think (and feel) about the scope of what we're going through, and it has left us both very tired and not necessarily full of holiday cheer.

And the landscape is getting worse with the nasty topic of radiation therapy. You may recall that we had a rather unpleasant conversation about this component of Vampboy's treatment a few months ago, and opted to withhold making the decision for awhile. Well, "awhile" has passed, and we are once again faced with having to choose a rather unpleasant treatment regimen without a whole lot of existing data on its safety. However, there are a few new facts in the mix; some good, some not-so:

1. The type of radiation therapy we were told about before (and promptly scared out of our minds about) is not the kind of therapy that is being recommended. Instead, a more focused, less dangerous form is being offered that promises to increase Vampboy's chances of survival without turning him into a vegetable. There will still be side effects, and they will be of a long-term nature that enrages me to no end, but we'll be learning more about those at a "big fat meeting" later this week with the entire team treating Vampboy.

2. If we decide to go ahead with radiation therapy, we would most likely also repeat the same chemo rounds that are indicated in the protocol with radiation -- which means we'd spend six weeks back in "Induction Hell". With radiation effects thrown in, this means six weeks with a very, VERY sick little boy.

3. About that six weeks -- radiation is a daily procedure that would require Vampboy to be under anesthetic. Every day for six weeks is a huge logistical nightmare by itself -- let alone the fact we are an hour from Boston and this would take place during the winter months.

We're not yet sure what our choice will be, but this is what runs through our heads on this New Year's Eve. Try as I might, when I look back on 2006, I cannot call to mind any memories before this all began. That life seems lost to me -- and the future that we had envisioned is just as obsolete. So, we look forward to 2007 with some sense of apathy -- same shit, different year, I guess. However, it will no doubt be a big year -- just not big in a "Best Year Ever" sort of way. Not even close....

I hope you all look back on 2006 with a bit more fondness than we do, I hope that you appreciate how thankful I am to have you as a reader. Here's hoping that my post on December 31st, 2007 is more upbeat than this one. Maybe that night I'll even pull my remaining cassette tapes out of storage and rewind them!

Monday, December 18, 2006

Firsts and Six

* Today is the first time in months that Vampboy is not accessed (no needle in his chest). He's doing so well with this light chemo round that we're able to take him off most of his anti-nausea drugs, and administer what little medications he currently needs orally.

* Tonight was the first time in months that, since there was no aforementioned needle to worry about in terms of infection, Vampboy took a bath -- in a tub filled with water, up to his chest. He laughed, he splashed, he chased a plastic dolphin around the tub.

* Tonight was this first time since early July that I read my son a story and put him to bed in his own crib. It will not last the full night, as he will need to be hooked up for the "evening feed", but it felt good to return to the old routine

* It is six months ago today that this journey started. Time flies when you're in hell too -- who knew?

Sunday, December 10, 2006

Do I Love You

It's Friday night. I have Vampboy in my arms, and in the dim glow of the christmas tree lights we are slowly dancing, as Ella Fitzgerald sings Cole Porter from the stereo.

Do I love you, do I?
Doesn't one and one make two?

Vampmommy is sitting in the kitchen, tears in her eyes as she prepares the next day's round of medicine. I can hear her say between soft sobs, "I want to make sure people understand."

"I know," I say, as I take Vampboy for another spin around the living room. He giggles, and snuggles closer to me.

Do I love you, do I?
Does July need a sky of blue?

It has been a long day for Vampmommy and boy -- a routine visit to the hospital for platelets, but 19 weeks into treatment we are all a little tired and worn. That's part of it, certainly. But, then there's the study.

Would I miss you, would I?
Should you ever should go away?

The Others are considering radiation treatment for Othergirl, who at almost three years old is a far better candidate for the procedure that Vampboy. In making the decision, they have contact specialists at St. Jude's for consultation. They forward to us in an email the report that was authored at St. Jude's regarding treatment for this type of cancer (which, now that we're deep into this I will tell you is called AT/RT) in children under the age of three, which both of us read over earlier in the evening. The words hang in the air like thick smoke, burning our eyes and lungs...

"Prognosis for infants and children younger than three years...remains dismal."

"...recurrance...similar to other reports of brief progression-free intervals averaging 5 months..."

Sure, we understand in our heads that none of the kids in this study were treated with the same protocol we are using now -- and the data to suggest that this protocol does work exists to a point. But still, words like "death" and "mortality" are still part of the common vernacular when describing patients with this cancer.

Or, perhaps our current mood comes from the phone call during dinner, when Death rang and asked for a seat at the table.

If the sun should desert the day,
What would life be?

We owe Vampboy's quick diagnosis to "One". One was diagnosed by the same oncologist with AT/RT one month before Vampboy -- given the disease's rarity, this is not a common occurance. However, the recent experience made it easier to catch a disease that is often mis-diagnosed, which meant that Vampboy was able to start the treatment as quickly as is suggested. At the time, One was a 15-month old girl. We've never met her nor her family, as they received treatment outside of Boston for a variety of reasons, but we always felt that "we're in the same boat" connection, and thought of them as much as we do Othergirl and Princess (a beautiful one-year old who was diagnosed a few months ago, although I don't think I've ever mentioned her here).

The phone call was from a local cancer support network, and after chatting for some time they were able to tell us that One had died back in late August or September -- the result of a side effect of one of the chemo drugs that is part of the protocol. A memorial walk was held in her name in October. We had no idea.

Will I worship you forever?
Isn't Heaven forever more?

Clean MRI scans, a son who looks great and laughs as I spin him again around the room, all conspire to help us forget the danger we are in, and what we still stand to lose. In the tired of another day at battle, we are reminded painfully that all is not well. Equal with reasons to be hopeful are reasons to contemplate the worst. I'm sure that the impossible love I have for my son is comperable to One's parents -- yet that love, and the prayers of their community, in the end did not prevent darkness overtaking.

I hold him close to me, and feel his soft cheek against mine. My grip is a little tighter than usual -- perhaps if I hold him close enough, my energy and our flitting about will keep the worst away. I need to remember this forever, I think, because I may not have more chances like this.

The dancing winds down, and Vampboy points to the kitchen, eager to join Vampmommy in the nightly routine. As a family, we settle down at the table, mixing medications, sharing giggles, and trying to remain afloat for one more second.

We want you to understand.

Do I love you, do I?
Oh, my dear,
it's so easy to see,
Don't you know I do?
Don't I show you I do,
Just as you love me?