* 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?
Monday, December 18, 2006
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?
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?
Tuesday, November 28, 2006
Send in the Clowns
The trip down to Boston goes smoothly enough, and before I know it I'm once again standing in the MRI room with an uncertain little boy in my arms, looking around with a mix of curiosity and concern. MRI's when idle make a sound that is similar to the heartbeat of someone jogging
at a good clip, and my anxiety increases slightly so my heart is in sync. A little push of the syringe later, and Vampboy is limp in my arms, visiting drug-induce dreamland. I quickly rest him on the MRI table and step away, leaving the swarm of medical personnel to their task.
Vampmommy and I head off to get some lunch, and sit in semi-silent discomfort as we listen to a group of student nurses at the next table presenting to their teacher on "quality of life care post-cancer treatment". We tear away from the eavesdropping, and have the quick conversation that we've both been thinking about internally for some time now.
"Everything is going to be all right, right?"
"I think so. I mean, I've been telling people that I think I'm supposed to be nervous about this, but it's not how I feel."
"Me neither. I think I'm in denial."
"Maybe denial, maybe ignorant optimism? I don't know, but I don't feel as nervous as I think I should be."
"It is going to be all right, right?"
"Sure."
We both realize on some level that today's test is big. If cancer shows up, we are in a very different hell from the one we're in right now (the answer to "can it get any worse?" is "yes...yes it can"). If it doesn't, we stay in our current hell, but with some satisfaction that redemption is closer than before. All we can do at the moment is wait, re-read the research paper on Vampboy's cancer, check the calendar to coordinate the next few weeks, and nibble our salads.
We finally pay the bill, meander to Starbucks for caffeine sustenance, then hightail it back to the MRI department to wait. Strangely, the testing takes longer than usual, so Vampmommy reads a book while I pull out my Ipod and listen to all of the deep songs I can find.
My mind goes to the possible scenarios. Scrubs calls and tells us that all is well, and we head home to spread the word. Or, Scrubs comes to us with sadness in her eyes and breaks our hearts with grim truth. What would that be like? How would I react, if I found out that Death was once again crashing the party and trying to take all of the attention?
Just as I begin to envision a great deal of dramatic sobbing, the clowns walk in. It turns out this hospital is equipped with about 10 circus clowns whose sole jobs are to visit the children in the hospital and lighten the atmosphere with a little tom-foolery. In the months since Vampboy started treatment, and the weeks and weeks we've been in the hospital, we'd never run across them. Yet when my son is out cold in another room here they are, Ukulele and all. The room is quickly devoid of any kids, as the remaining two that were in the waiting room were whisked away for their turn in the scanner. This left my wife and I, the two people at the desk, and the clowns.
One of them asks what I'm listening to, as I have my Ipod earphones still in my ears.
"Nothing, actually."
"Oh, I see -- just keeping them in so people won't talk to you?" I chuckle and nod my head. "So, what were you listening to?"
"Damien Rice"
The other clown jumps in "Oh, I know him! He did that song...The Coal Miner's Daughter?"
The conversation then goes to the Damien Rice discography, and the correction that the song is called "The Blower's Daughter". "That doesn't sound too appropriate," the clown with the Ukulele says, and he begins a rousing rendition of "The Lion Sleeps Tonight". He goes from there into a Spanish version, whereby we spend about fifteen minutes all working together on how to say "In the jungle, the Lion pees tonight". I have no idea where that came from, but somehow talking to circus clowns about lions urinating in the rain forest seems completely in line with the rest of life.
Eventually some poor boy accidentally walks into the room, then makes a harried exit at the site of the clowns. They had clearly engaged with him before, so they dutifully took off to torment him with some silly song or another. We return to our thinking and waiting, but not with the same seriousness as before.
It was another ten minutes before we could meet up with our drugged son in the recovery room, and another hour and a half before we got the official word from Scrubs that our current hell will stay our comfortable (yet hot) home, as the scans showed "no signs of disease". So we are fulfilling the happier scenario of ending our day sharing good news with the world.
Sadly, the good news only means that we are ready to push forward with weeks and weeks of more treatments -- it is not indicative of a "cure" or anything like that. We can only celebrate the news for what it represents, which is only the present moment. We will once again undergo these tests in a couple of months, as another guidepost along a journey that seems like it will never end.
But thank God clowns are included.
at a good clip, and my anxiety increases slightly so my heart is in sync. A little push of the syringe later, and Vampboy is limp in my arms, visiting drug-induce dreamland. I quickly rest him on the MRI table and step away, leaving the swarm of medical personnel to their task.
Vampmommy and I head off to get some lunch, and sit in semi-silent discomfort as we listen to a group of student nurses at the next table presenting to their teacher on "quality of life care post-cancer treatment". We tear away from the eavesdropping, and have the quick conversation that we've both been thinking about internally for some time now.
"Everything is going to be all right, right?"
"I think so. I mean, I've been telling people that I think I'm supposed to be nervous about this, but it's not how I feel."
"Me neither. I think I'm in denial."
"Maybe denial, maybe ignorant optimism? I don't know, but I don't feel as nervous as I think I should be."
"It is going to be all right, right?"
"Sure."
We both realize on some level that today's test is big. If cancer shows up, we are in a very different hell from the one we're in right now (the answer to "can it get any worse?" is "yes...yes it can"). If it doesn't, we stay in our current hell, but with some satisfaction that redemption is closer than before. All we can do at the moment is wait, re-read the research paper on Vampboy's cancer, check the calendar to coordinate the next few weeks, and nibble our salads.
We finally pay the bill, meander to Starbucks for caffeine sustenance, then hightail it back to the MRI department to wait. Strangely, the testing takes longer than usual, so Vampmommy reads a book while I pull out my Ipod and listen to all of the deep songs I can find.
My mind goes to the possible scenarios. Scrubs calls and tells us that all is well, and we head home to spread the word. Or, Scrubs comes to us with sadness in her eyes and breaks our hearts with grim truth. What would that be like? How would I react, if I found out that Death was once again crashing the party and trying to take all of the attention?
Just as I begin to envision a great deal of dramatic sobbing, the clowns walk in. It turns out this hospital is equipped with about 10 circus clowns whose sole jobs are to visit the children in the hospital and lighten the atmosphere with a little tom-foolery. In the months since Vampboy started treatment, and the weeks and weeks we've been in the hospital, we'd never run across them. Yet when my son is out cold in another room here they are, Ukulele and all. The room is quickly devoid of any kids, as the remaining two that were in the waiting room were whisked away for their turn in the scanner. This left my wife and I, the two people at the desk, and the clowns.
One of them asks what I'm listening to, as I have my Ipod earphones still in my ears.
"Nothing, actually."
"Oh, I see -- just keeping them in so people won't talk to you?" I chuckle and nod my head. "So, what were you listening to?"
"Damien Rice"
The other clown jumps in "Oh, I know him! He did that song...The Coal Miner's Daughter?"
The conversation then goes to the Damien Rice discography, and the correction that the song is called "The Blower's Daughter". "That doesn't sound too appropriate," the clown with the Ukulele says, and he begins a rousing rendition of "The Lion Sleeps Tonight". He goes from there into a Spanish version, whereby we spend about fifteen minutes all working together on how to say "In the jungle, the Lion pees tonight". I have no idea where that came from, but somehow talking to circus clowns about lions urinating in the rain forest seems completely in line with the rest of life.
Eventually some poor boy accidentally walks into the room, then makes a harried exit at the site of the clowns. They had clearly engaged with him before, so they dutifully took off to torment him with some silly song or another. We return to our thinking and waiting, but not with the same seriousness as before.
It was another ten minutes before we could meet up with our drugged son in the recovery room, and another hour and a half before we got the official word from Scrubs that our current hell will stay our comfortable (yet hot) home, as the scans showed "no signs of disease". So we are fulfilling the happier scenario of ending our day sharing good news with the world.
Sadly, the good news only means that we are ready to push forward with weeks and weeks of more treatments -- it is not indicative of a "cure" or anything like that. We can only celebrate the news for what it represents, which is only the present moment. We will once again undergo these tests in a couple of months, as another guidepost along a journey that seems like it will never end.
But thank God clowns are included.
Saturday, November 25, 2006
Intermission
Wow...Have I really been away this long? In the seemingly endless suggestions on how to be an effective blogger, frequency of entries is rule #1. Needless to say, I'm in the blogging doghouse.
So, what gives? Well, it is surprisingly difficult to come up with snarky commentary when the life we are currently living goes on without much fanfare. Strangely, the "new normal" does indeed have a normalcy component that makes me feel like I've little news to share from day to day. Work, home, hospital -- mostly in that order -- has become as routine as brushing one's teeth, and I have a feeling you don't want me blogging about that (but thank goodness someone already does!).
Of course, then there's the trypto-fantastic overdosing that comes with Thanksgiving. I am happy to report after arising from my holiday feast-stupor that we spent the day at home, with family. In fact, this is the first cycle that I'm proud to announce Vampboy made it through without getting a hospital-visit-causing fever! We dodged a bullet due to a minor infection he has, but they were gracious enough to let us treat it at home by adding yet another medication to the endless stream. So he has enjoyed a few weeks of home-life, with a few day trips to the Doctor's thrown in for some check-ups and blood products.
The next big day is Tuesday, as it will take us to Boston for the all-telling MRI. We're at the end of Phase I of treatment, so this will let us know that all the puke and blood and needles and tears and ick has been working. Limbs crossed for this one, kids!
So, what gives? Well, it is surprisingly difficult to come up with snarky commentary when the life we are currently living goes on without much fanfare. Strangely, the "new normal" does indeed have a normalcy component that makes me feel like I've little news to share from day to day. Work, home, hospital -- mostly in that order -- has become as routine as brushing one's teeth, and I have a feeling you don't want me blogging about that (but thank goodness someone already does!).
Of course, then there's the trypto-fantastic overdosing that comes with Thanksgiving. I am happy to report after arising from my holiday feast-stupor that we spent the day at home, with family. In fact, this is the first cycle that I'm proud to announce Vampboy made it through without getting a hospital-visit-causing fever! We dodged a bullet due to a minor infection he has, but they were gracious enough to let us treat it at home by adding yet another medication to the endless stream. So he has enjoyed a few weeks of home-life, with a few day trips to the Doctor's thrown in for some check-ups and blood products.
The next big day is Tuesday, as it will take us to Boston for the all-telling MRI. We're at the end of Phase I of treatment, so this will let us know that all the puke and blood and needles and tears and ick has been working. Limbs crossed for this one, kids!
Wednesday, November 08, 2006
New Morning
My eyes open and scan the room. Dim light is coming in through the side of the curtain, and Vampboy is sleeping quietly next to me. Beyond that, I see the pillow VM left in her place so she could go get ready for the day without Vampboy rolling off the bed.
The room is quiet, except for the occasional hum of the pump giving Vampboy his nutrition. This morning it's Pedialyte -- clear liquid flowing through a clear tube that travels from the pump down the bed, towards the end of another tube that will complete the journey into his stomach. The sound of the pump has become part of our home's ambiance, and it's sound in the quiet of the morning is somehow soothing.
Vampboy is facing away from me, and with the aforementioned feeding tube on his opposite cheek, I see before me the unbelievably soft face of my son, uninterrupted by signs of his disease. His skin has the warm glow of a full night's sleep, and he breaths slowly and steadily. I take the moment to stare in wonder that is my son.
Shortly, he stirs -- and while I've seen many mornings greeted with cries and flailing of a kid who probably doesn't feel well, today is different. His eyes open slowly, and I can tell that he's staring off at the pillow before his face. He breaths deeply, his arms rising and his back arching in a luxurious morning stretch. Then, slowly, he turns to look at me. With a smile and a whisper I say "good morning, son" -- to which a smile responds, big and toothy. Another stretch, a little giggle, and he rolls on his side to give me a hug.
Moments of heartache, frustration, stress and fear wash away. This moment belongs to me and my son. Cancer can take away much, but in this moment it has vanished. We're just father and son, greeting the day and each other.
There will be time for battles later on today. But I hold this moment for as long as I can, freezing it in my mind. A reminder of what was, and a vision of what will be again.
More than anything else, a reminder that I love being someone's Dad.
The room is quiet, except for the occasional hum of the pump giving Vampboy his nutrition. This morning it's Pedialyte -- clear liquid flowing through a clear tube that travels from the pump down the bed, towards the end of another tube that will complete the journey into his stomach. The sound of the pump has become part of our home's ambiance, and it's sound in the quiet of the morning is somehow soothing.
Vampboy is facing away from me, and with the aforementioned feeding tube on his opposite cheek, I see before me the unbelievably soft face of my son, uninterrupted by signs of his disease. His skin has the warm glow of a full night's sleep, and he breaths slowly and steadily. I take the moment to stare in wonder that is my son.
Shortly, he stirs -- and while I've seen many mornings greeted with cries and flailing of a kid who probably doesn't feel well, today is different. His eyes open slowly, and I can tell that he's staring off at the pillow before his face. He breaths deeply, his arms rising and his back arching in a luxurious morning stretch. Then, slowly, he turns to look at me. With a smile and a whisper I say "good morning, son" -- to which a smile responds, big and toothy. Another stretch, a little giggle, and he rolls on his side to give me a hug.
Moments of heartache, frustration, stress and fear wash away. This moment belongs to me and my son. Cancer can take away much, but in this moment it has vanished. We're just father and son, greeting the day and each other.
There will be time for battles later on today. But I hold this moment for as long as I can, freezing it in my mind. A reminder of what was, and a vision of what will be again.
More than anything else, a reminder that I love being someone's Dad.
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.
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....
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