5 more -- that's all of the chemo cycles VB has in front of him, with #5 in the countdown starting on Tuesday. So many behind, so few ahead; the horizon seems to get brighter with each passing day.
The downside is that it brings out my impatience -- for I do not do well with transition. I fight hard not to read the last page of a book first, and as I near the end I find myself skipping words to get there faster. Just be done already, dammit!
I am trying not to let that part of me come out right now. There is still much work to be done. But talking about a normal life is incredibly addictive, particularly when you don't have one.
Sunday, June 24, 2007
Sunday, June 17, 2007
1 AD
BC = Before Cancer
AD= After Diagnosis
6:30am Father's Day - June, 2006 BC
It was the cry through the baby monitor that hurled me out of bed. Although Vampboy had been struggling with a tummy bug and other ickiness the week prior, it seemed routine for a kid in day care, ever-exposed to fellow baby-snot.
But the sound that morning...To this day I can't describe it in words, but I will hear it in my head for the rest of my life. It just sounded wrong, so I made my way down the hall and opened the door.....
6:30am Father's Day - June 2007 AD
On Friday, fever once again landed us in Chez Healing. Although not serious, every fever is treated as such, so we've spent quite a few nights in the ER with them the past couple of weeks. With an immune system reduced to nothing, the one Vampboy had on Friday also meant it was time for admission, leaving me contemplating spending another Father's Day in the hospital.
I awoke this morning after a night of surprisingly good sleep, given our surroundings. Vampmommy came down for the night so we could be together on this anniversary, and since she slept with Vampboy I got the pull-out chair some distance away from the overnight drama of blood transfusions and low blood pressure readings.
She appears from behind the hospital curtain to tell me that VB has been asking to cuddle with me, so I pull myself up from the chair, stumble blindly over to the crib, and fall in next to him. He immediately wraps his arms around mine and buries his head in my chest. In a few moments he will open his eyes and begin talking to me about his dreams, and asking for the nurse (who's name he says to her with a huge smile on his face shortly thereafter).
I have dreaded this day, as I was completely unaware how I would react. I thought at first that I wouldn't want to even recognize Father's Day, instead choosing to huddle in a corner and weep. But then it got closer, and we began to make plans -- although most of them were called off after Chez Healing came a-callin'.
Now, here I am, staring up at the ceiling as the moment happens, and we pass the milestone of a year in the trenches of battle. Rather than the tears, grief and anger I expected to pour out of me in some cathartic nuclear meltdown, only one thought came to mind. It was from the Thursday after Father's Day, when the oncologist came by our room to tell us that the pathology being done on VB's tumor didn't look promising, and that we were most likely looking at "the C camp". Looking for a way to make this real to us, my wife had asked, even though we didn't know exactly what we were dealing with, if he could give us a ballpark on survival rates of pediatric brain tumors.
His answer was the bitch-slap we needed to comprehend the beginnings of our journey: "Oh, about 40%". As the tears began and the conversation ended, I clearly remember my wife pleading to me, "But, I love our little family. I love our life," even as we seemed to watch both evaporate before our eyes.
One year later, and countless horrors and moments of grief and rage and darkness, and all that resonates with me is the joy that we are still a family. We are still here. The future remains a permanent state of uncertainty, but on this Father's Day the greatest gift I've been given is the subtle joy of knowing that there is still a Vampfamily to write about.
I spend the rest of the day gliding along with this feeling as we chat with nurses and doctors, help our roommate get her daughter to the play room, clean said room (what is it people don't understand about putting toys AWAY after they've been played with?), and await lab work. When it comes, we celebrate again as we leave Chez Healing once more as a family intact, and return home to pick up on a Father's Day that almost wasn't...Almost.
So, happy Father's Day to all of my fellow dads and dad-bloggers, and thanks to each of you for joining us on the ride the past year. Here's to the chance that future Father's Days will be even better...
AD= After Diagnosis
6:30am Father's Day - June, 2006 BC
It was the cry through the baby monitor that hurled me out of bed. Although Vampboy had been struggling with a tummy bug and other ickiness the week prior, it seemed routine for a kid in day care, ever-exposed to fellow baby-snot.
But the sound that morning...To this day I can't describe it in words, but I will hear it in my head for the rest of my life. It just sounded wrong, so I made my way down the hall and opened the door.....
6:30am Father's Day - June 2007 AD
On Friday, fever once again landed us in Chez Healing. Although not serious, every fever is treated as such, so we've spent quite a few nights in the ER with them the past couple of weeks. With an immune system reduced to nothing, the one Vampboy had on Friday also meant it was time for admission, leaving me contemplating spending another Father's Day in the hospital.
I awoke this morning after a night of surprisingly good sleep, given our surroundings. Vampmommy came down for the night so we could be together on this anniversary, and since she slept with Vampboy I got the pull-out chair some distance away from the overnight drama of blood transfusions and low blood pressure readings.
She appears from behind the hospital curtain to tell me that VB has been asking to cuddle with me, so I pull myself up from the chair, stumble blindly over to the crib, and fall in next to him. He immediately wraps his arms around mine and buries his head in my chest. In a few moments he will open his eyes and begin talking to me about his dreams, and asking for the nurse (who's name he says to her with a huge smile on his face shortly thereafter).
I have dreaded this day, as I was completely unaware how I would react. I thought at first that I wouldn't want to even recognize Father's Day, instead choosing to huddle in a corner and weep. But then it got closer, and we began to make plans -- although most of them were called off after Chez Healing came a-callin'.
Now, here I am, staring up at the ceiling as the moment happens, and we pass the milestone of a year in the trenches of battle. Rather than the tears, grief and anger I expected to pour out of me in some cathartic nuclear meltdown, only one thought came to mind. It was from the Thursday after Father's Day, when the oncologist came by our room to tell us that the pathology being done on VB's tumor didn't look promising, and that we were most likely looking at "the C camp". Looking for a way to make this real to us, my wife had asked, even though we didn't know exactly what we were dealing with, if he could give us a ballpark on survival rates of pediatric brain tumors.
His answer was the bitch-slap we needed to comprehend the beginnings of our journey: "Oh, about 40%". As the tears began and the conversation ended, I clearly remember my wife pleading to me, "But, I love our little family. I love our life," even as we seemed to watch both evaporate before our eyes.
One year later, and countless horrors and moments of grief and rage and darkness, and all that resonates with me is the joy that we are still a family. We are still here. The future remains a permanent state of uncertainty, but on this Father's Day the greatest gift I've been given is the subtle joy of knowing that there is still a Vampfamily to write about.
I spend the rest of the day gliding along with this feeling as we chat with nurses and doctors, help our roommate get her daughter to the play room, clean said room (what is it people don't understand about putting toys AWAY after they've been played with?), and await lab work. When it comes, we celebrate again as we leave Chez Healing once more as a family intact, and return home to pick up on a Father's Day that almost wasn't...Almost.
So, happy Father's Day to all of my fellow dads and dad-bloggers, and thanks to each of you for joining us on the ride the past year. Here's to the chance that future Father's Days will be even better...
Tuesday, June 05, 2007
The Last Beat of my Heart
We are at the ER, and once again the nurse comes in and pokes with a needle, drawing blood for yet more blood tests. We are hoping that this time it will tell us what we need to know.
Oh, did I mention that this blood draw was not for Vampboy? Nope -- it was for me.
Friday was a relatively "normal" day. Vampboy was delayed in his treatment, which meant that a weekend of shuttling back and forth to Boston was put off (good news), but the delay meant adding another week to the treatment calendar (bad news). I was enjoying a day at my office, trying in vain to get ahead of the seeming endless pile of paperwork, good ideas and "to-dos". I was in the process of creating the 4th draft of an agenda for an upcoming training, when I noticed a slight pain in my chest. Having asthma, it's not unusual for me to feel some tightness now and again, so I didn't think much of it at first.
In fact, I continued on with my routine, which included a trip to the gym for a little cardio workout. The pain came and went, never getting worse, for the next half and hour. When it continued to stick around, I decided it was time to get it checked -- after all, I have a family history of high cholesterol and cadiac issues (thanks, dad!). A quick call to the on-call nurse, and shortly after Vampmommy was taking me in for what became my first stay in a hospital as a patient since my own birth.
I hadn't even been moved from the ER to the floor before the pain suddenly stopped. Various blood draws and some time running up a treadmill under doctor supervision later, it was determined that whatever it was, a cardiac incident it was not.
Perhaps stress? Thai food I had for lunch? Either way, it was nice to know that it wasn't "the big one", and I was discharged Saturday morning with enough time to join Vampboy at his friend's birthday party (complete with adult-size bouncy house). I'll be visiting my doctor shortly to follow up, but a few days out and all is back to "normal" -- including Vampboy starting his next chemo round yesterday.
Perhaps I wasn't clear to the cosmos when Vampboy first got sick -- no one is aloud to get sick or die while Vampboy is in treatment. That includes me.
Am I clear?
Oh, did I mention that this blood draw was not for Vampboy? Nope -- it was for me.
Friday was a relatively "normal" day. Vampboy was delayed in his treatment, which meant that a weekend of shuttling back and forth to Boston was put off (good news), but the delay meant adding another week to the treatment calendar (bad news). I was enjoying a day at my office, trying in vain to get ahead of the seeming endless pile of paperwork, good ideas and "to-dos". I was in the process of creating the 4th draft of an agenda for an upcoming training, when I noticed a slight pain in my chest. Having asthma, it's not unusual for me to feel some tightness now and again, so I didn't think much of it at first.
In fact, I continued on with my routine, which included a trip to the gym for a little cardio workout. The pain came and went, never getting worse, for the next half and hour. When it continued to stick around, I decided it was time to get it checked -- after all, I have a family history of high cholesterol and cadiac issues (thanks, dad!). A quick call to the on-call nurse, and shortly after Vampmommy was taking me in for what became my first stay in a hospital as a patient since my own birth.
I hadn't even been moved from the ER to the floor before the pain suddenly stopped. Various blood draws and some time running up a treadmill under doctor supervision later, it was determined that whatever it was, a cardiac incident it was not.
Perhaps stress? Thai food I had for lunch? Either way, it was nice to know that it wasn't "the big one", and I was discharged Saturday morning with enough time to join Vampboy at his friend's birthday party (complete with adult-size bouncy house). I'll be visiting my doctor shortly to follow up, but a few days out and all is back to "normal" -- including Vampboy starting his next chemo round yesterday.
Perhaps I wasn't clear to the cosmos when Vampboy first got sick -- no one is aloud to get sick or die while Vampboy is in treatment. That includes me.
Am I clear?
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