Things change so quickly. I still wander most of my days in a shock that a little over a year ago, all I did was open a door -- and suddenly my life was changed forever. In an instant, everything you know (or think you know) about your very existence can be taken from you.
Othergirl's situation is not good. The tumor was indeed another AT/RT tumor, meaning that her cancer has spread. In addition, they were unable to remove the entire growth, as part of it was wrapped around her brain stem (the most common location for these tumors).
Yes, it is as bad as it sounds - so questions are being asked, options are being weighed. Meanwhile, Vampmommy and I balance our grief for Othergirl with our fear of how vulnerable Vampboy still is.
Just when you think the coast looks clearer......
Thursday, August 30, 2007
Monday, August 27, 2007
Calling All Angels
When we first met her, Othergirl was further ahead in her treatment than us. This journey has been a true test -- but one made easier by the fact that we were not the only ones around going through it, and we had a reference point to know what to expect moving forward. Othergirl and Vampboy had similar cases in many ways -- one tumor found, successfully taken out, and treatment has progressed with equal parts optimism for these two. Othergirl was initially misdiagnosed and started a different treatment regimen before being put on the current one, but since then we have taken comfort in our shared experience, even though Vampboy has dealt with more severe side effects than Othergirl has.
This week was supposed to mark the last treatment week for Othergirl -- but that is not to be. Last week, a "spot" was found on her MRI. It looks different than the first tumor, but something is going on in there, and whatever it is it isn't good. So, tomorrow her family will once again re-visit the horror and confusion of another surgery that may only bring more questions than answers.
And they only had one chemo round left.
I'm sure I don't need to explain here what ran through our minds as we heard the news. Behind my wife's emotions as she struggled to share with me the information over the phone, Vampboy's voice could be heard in the background saying, "Mommy sad. Mommy crying." And we only have two chemo rounds left. This could be him.
I am not a religious person. Unlike those for whom a horrific tragedy sends them deep into a faith practice, this experience has not opened my eyes and heart to any church or denomination. In fact, the basic premise of my spirituality, that the universe "unfolds as it should", has been called into question as the insanity of this situation becomes more and more apparent (I mean, one more round left -- are you f#$%ing KIDDING ME?!?). However, in the end I believe we all have within us some personal compass that points us toward that which is higher than us.
I'd ask you all to do me a favor and, wherever your compass points, bring your energy/love/reiki/prayers/meditations/interpretive dance to bear for Othergirl and her family.
This week was supposed to mark the last treatment week for Othergirl -- but that is not to be. Last week, a "spot" was found on her MRI. It looks different than the first tumor, but something is going on in there, and whatever it is it isn't good. So, tomorrow her family will once again re-visit the horror and confusion of another surgery that may only bring more questions than answers.
And they only had one chemo round left.
I'm sure I don't need to explain here what ran through our minds as we heard the news. Behind my wife's emotions as she struggled to share with me the information over the phone, Vampboy's voice could be heard in the background saying, "Mommy sad. Mommy crying." And we only have two chemo rounds left. This could be him.
I am not a religious person. Unlike those for whom a horrific tragedy sends them deep into a faith practice, this experience has not opened my eyes and heart to any church or denomination. In fact, the basic premise of my spirituality, that the universe "unfolds as it should", has been called into question as the insanity of this situation becomes more and more apparent (I mean, one more round left -- are you f#$%ing KIDDING ME?!?). However, in the end I believe we all have within us some personal compass that points us toward that which is higher than us.
I'd ask you all to do me a favor and, wherever your compass points, bring your energy/love/reiki/prayers/meditations/interpretive dance to bear for Othergirl and her family.
Thursday, August 23, 2007
Birds of My Neighborhood
At the beginning of the summer, a pair of morning doves decided to make their nest in a hanging plant on our deck. The deck is off of our bedroom, and Vampmommy had just finished putting out flower pots and our little table and chairs for the season when they arrived and claimed the deck as their own.
While we were disappointed that our outdoor living space had been hijacked, we enjoyed the front-row seating to watch them build their nest and start a little birdy-family. As it turns out, morning doves can nest 4 or 5 times a season, and typically use the same location. This worked out in our favor, when the new babies and parental units flew the nest the first time I approached with a camera.
Fortunately, I caught them the next time around:
It takes about two weeks for hatching to take place, and after daily checking and Vampboy starting each morning with "morning birdies!", the not-so-little bundles made themselves known:
Of course, there's nothing like witnessing a member of the animal kingdom start a family to leave one dripping with metaphoric comparisons to one's own life. However, I'm satisfied with listening to Vampboy talk about his "baby birdies" as he looks out the glass doors, into the woods behind our house.
This weekend it looks like the window will have a different view, as our treatment schedule has once again arrived at the place where a fever and trip to Chez Healing are in order. But I'm hoping that we'll come home to find one last family-in-the-making before the end of summer.
While we were disappointed that our outdoor living space had been hijacked, we enjoyed the front-row seating to watch them build their nest and start a little birdy-family. As it turns out, morning doves can nest 4 or 5 times a season, and typically use the same location. This worked out in our favor, when the new babies and parental units flew the nest the first time I approached with a camera.
Fortunately, I caught them the next time around:
It takes about two weeks for hatching to take place, and after daily checking and Vampboy starting each morning with "morning birdies!", the not-so-little bundles made themselves known:
Of course, there's nothing like witnessing a member of the animal kingdom start a family to leave one dripping with metaphoric comparisons to one's own life. However, I'm satisfied with listening to Vampboy talk about his "baby birdies" as he looks out the glass doors, into the woods behind our house.
This weekend it looks like the window will have a different view, as our treatment schedule has once again arrived at the place where a fever and trip to Chez Healing are in order. But I'm hoping that we'll come home to find one last family-in-the-making before the end of summer.
Tuesday, August 14, 2007
A Spoiler-Free Letter to Harry Potter
Dear Harry-
I guess I'm in the mood to write letters this week to amorphous concepts or, in your case, fictional characters. However, following her bliss is what gave JK Rowling the status of being richer than the Queen of England, so I suppose I should follow mine and see where it takes me. Forgive me if my letter takes some time to get to you. There are few owls where I live, and the crows don't take too kindly to having mail strapped to their legs.
When you first came on the scene I had just finished my graduate work. After two years of reading such riveting tomes as Theory and Practice of Group Psychotherapy and RD Lang's The Divided Self, I was desperate to get back to reading for pleasure. Since The Sorcerer's Stone (or, for the Anglo-file in me, The Philosopher's Stone) landed on my nightstand almost ten years ago, I have not stopped reading -- even though the speed of my hobby varies depending on life's other duties. Your story made me dream again -- it captured my imagination unlike anything else I had read since I was a teenager.
Tonight, while my wife and son are away at Chez Healing for the first of 3 remaining chemo rounds, I sat on the couch and came to "the end of all things" (to quote from another similar hero). That was an hour ago, and I've wandered around the house since in silence, taking in this profound moment. And, all the while, I think of my son.
While I am one of those folks that always knew I would be a parent, the experience I had that sealed the deal for me came the one time I went to a midnight party in your honor. I think it was Prisoner of Azkaban that was about to come out, and I found myself surrounded by hundreds of gleeful children and their parents, awaiting the stroke of midnight as if a great magical act was indeed about to occur. When the time came, the clerk at the front of the store began calling out the numbers given to people when they came in the door. One by one each made their way to the front to make their purchase. About an hour in, the number 254 was called (why I can remember that, I have no idea), and from the back of the store I heard a little boy scream "THAT'S ME! THAT'S ME!!!!". As if he had just one a lottery he wasn't expecting to win, the boy raced through the crowd and practically tackled the cashier.
At that moment, bearing witness to the excitement and shear joy in that child's face, the desire to be a parent was etched into my heart. From that point on, every time a new Potter book materialized, my imagination went first towards envisioning the scene on the page -- then second to envisioning me reading the story to my own children.
The dream of parenthood as become a reality -- but as you learned through your travels, Harry, sometimes the dream of family is marred with tragedy and unpleasantness. Recently, as my wife and I began our conversations about the future of our family, my wife suggested that we make a list of the things we want our son to experience. The goal is to focus as much attention as we can on making sure we take the time now to expose him to everything -- as we don't know how much time we have.
Of course, top on my list is the day when I can sit next to his bed and read to him about you. Having reached the end of your story and taken stock of it in total, I see a great many similarities between my son and you. First off, the scars -- although my son's lightning bolt is on the side of his head, and his forehead has a horseshoe-shaped one. Like you, my son earned his while fighting a terrible evil. While the end of my son's story is uncertain, you are no doubt kindred spirits in battle.
I used to run leadership camps for middle-school students, and during the closing activity of the final night I would always read to them about your discovery that you were a wizard. In the world of archetypes that you will no doubt be added to, for me you always represented the wizard in all of us. This is a secret so many miss out on; that we are beautiful beings capable of great things, who should never allow ourselves to be put into cupboards.
Rowling suggests that children be 7 years old before reading your story. Tonight, I gently placed Hallows next to the other 6 books in the bookcase in my son's room, and slid shut the door. Aside from the time my wife retrieves it to finish your story herself, they will sit waiting for the day when, like a newly discovered treasure, my son goes to claim your story for his own. With my own wand in hand, with every spell I can cast, I am working hard to see that day.
Yours in Wizardry,
VD
I guess I'm in the mood to write letters this week to amorphous concepts or, in your case, fictional characters. However, following her bliss is what gave JK Rowling the status of being richer than the Queen of England, so I suppose I should follow mine and see where it takes me. Forgive me if my letter takes some time to get to you. There are few owls where I live, and the crows don't take too kindly to having mail strapped to their legs.
When you first came on the scene I had just finished my graduate work. After two years of reading such riveting tomes as Theory and Practice of Group Psychotherapy and RD Lang's The Divided Self, I was desperate to get back to reading for pleasure. Since The Sorcerer's Stone (or, for the Anglo-file in me, The Philosopher's Stone) landed on my nightstand almost ten years ago, I have not stopped reading -- even though the speed of my hobby varies depending on life's other duties. Your story made me dream again -- it captured my imagination unlike anything else I had read since I was a teenager.
Tonight, while my wife and son are away at Chez Healing for the first of 3 remaining chemo rounds, I sat on the couch and came to "the end of all things" (to quote from another similar hero). That was an hour ago, and I've wandered around the house since in silence, taking in this profound moment. And, all the while, I think of my son.
While I am one of those folks that always knew I would be a parent, the experience I had that sealed the deal for me came the one time I went to a midnight party in your honor. I think it was Prisoner of Azkaban that was about to come out, and I found myself surrounded by hundreds of gleeful children and their parents, awaiting the stroke of midnight as if a great magical act was indeed about to occur. When the time came, the clerk at the front of the store began calling out the numbers given to people when they came in the door. One by one each made their way to the front to make their purchase. About an hour in, the number 254 was called (why I can remember that, I have no idea), and from the back of the store I heard a little boy scream "THAT'S ME! THAT'S ME!!!!". As if he had just one a lottery he wasn't expecting to win, the boy raced through the crowd and practically tackled the cashier.
At that moment, bearing witness to the excitement and shear joy in that child's face, the desire to be a parent was etched into my heart. From that point on, every time a new Potter book materialized, my imagination went first towards envisioning the scene on the page -- then second to envisioning me reading the story to my own children.
The dream of parenthood as become a reality -- but as you learned through your travels, Harry, sometimes the dream of family is marred with tragedy and unpleasantness. Recently, as my wife and I began our conversations about the future of our family, my wife suggested that we make a list of the things we want our son to experience. The goal is to focus as much attention as we can on making sure we take the time now to expose him to everything -- as we don't know how much time we have.
Of course, top on my list is the day when I can sit next to his bed and read to him about you. Having reached the end of your story and taken stock of it in total, I see a great many similarities between my son and you. First off, the scars -- although my son's lightning bolt is on the side of his head, and his forehead has a horseshoe-shaped one. Like you, my son earned his while fighting a terrible evil. While the end of my son's story is uncertain, you are no doubt kindred spirits in battle.
I used to run leadership camps for middle-school students, and during the closing activity of the final night I would always read to them about your discovery that you were a wizard. In the world of archetypes that you will no doubt be added to, for me you always represented the wizard in all of us. This is a secret so many miss out on; that we are beautiful beings capable of great things, who should never allow ourselves to be put into cupboards.
Rowling suggests that children be 7 years old before reading your story. Tonight, I gently placed Hallows next to the other 6 books in the bookcase in my son's room, and slid shut the door. Aside from the time my wife retrieves it to finish your story herself, they will sit waiting for the day when, like a newly discovered treasure, my son goes to claim your story for his own. With my own wand in hand, with every spell I can cast, I am working hard to see that day.
Yours in Wizardry,
VD
Monday, August 13, 2007
The Residents
Dear First-Years;
It has now been over a month since you began your Residency at Chez Healing -- Congratulations! I'm sure you're thrilled to be at such a fine institution. No doubt your medical career, much like your student loan debt, is off to a great start. As the Vampfamily is in the waning weeks of a year-and-a-half residency of our own, I thought it wise to bestow upon you some of our wisdom, observations and learnings from our time there. It is my hope that these pearls can only strengthen your effectiveness as a practitioner of the Medical Arts.
As Lisa said to Wendy..."Shall we begin?"
1. Doctor Torres is hot. There, I said it. But seriously -- what is it about medical dramas that make them as standard to the tv line-up as the evening news? I think it has something to do with the public's desire to see doctors as normal people. Whether that's to humanize you all and make you less scary, or to fill our fantasy of hot docs in every exam room, it seems like we can't get away from them. But no, I'm not so naive as to think your lives are like that. Duh.
2. Nurse know best. Doctor's may make all of the big decisions in a patients care, but the nurses are the ones that really get to know the patients, and see them on a daily (if not hourly) basis. Given this, those of us who enter into hospitals become quite attached to our nurses, and as parents of a child in their care we become quite protective. The message to you, dear Resident, is a word of caution: treat the nurses well. If you don't, they tell us -- and while they may not be able to respond, I am more than happy to impale you on an IV pole.
3. You may "wanna new drug", but we don't. I read somewhere a few months ago that the average hospital patient is given the incorrect dose of medication once a day. I wouldn't have believed it unless I'd seen it, but I have. See, while the nurses give the meds, you write the orders for them. And, although you might find this shocking, we are paying attention. So, you might want to consider actually reading the 30 copies we provide of our son's medication schedule every time we come to visit. Or, if you're feeling like accessing that rare mental process called "common sense", you could log on to his electronic medical file and see it for yourself. Just a thought.
4. Let me out. Let's face it -- you're busy people with a lot to do. Patients have needs constantly -- and somewhere in there you have to sleep. Why burden yourself with patients who don't need to be there? Of course, I am talking about those of us who are twiddling our thumbs, awaiting discharge. Normally, we can see the attending physician at 8am, and not have discharge paperwork completed until 2 in the afternoon. Once, while in the midst of what should have been a simple ER visit, we spent more time waiting for the discharge paperwork than we did actually being seen! I know you have a lot to do before getting to that paperwork, but the faster you get us out, the more money you save - both the insurance industry, and the hospital. Think of the brownie-points! NOTE: When completing paperwork, remember #3 -- correct medication instructions for the trip home would be helpful.
5. Parents - the anti-drug. There comes a time in the journey of families like ours when we know more about our children's medical conditions, and the nuances of his/her treatment, than you. Respect that -- it will prevent me from wanting to hit you when you ask something stupid. Oh, and asking me if I'm a doctor when I make suggestion as to my son's current condition is not really a compliment. In fact, it fills me with dread that something that would come out of my simple mind seems revolutionary to you.
6. One last thing. Anti-nausea medications are the cornerstone of effective cancer treatment. Having them available only in oral form for children with cancer is, to put it bluntly, stupid. Do something about that, would you? Patches, lotions, anything. Could you look into that? Thanks.
Now, get to work.
It has now been over a month since you began your Residency at Chez Healing -- Congratulations! I'm sure you're thrilled to be at such a fine institution. No doubt your medical career, much like your student loan debt, is off to a great start. As the Vampfamily is in the waning weeks of a year-and-a-half residency of our own, I thought it wise to bestow upon you some of our wisdom, observations and learnings from our time there. It is my hope that these pearls can only strengthen your effectiveness as a practitioner of the Medical Arts.
As Lisa said to Wendy..."Shall we begin?"
1. Doctor Torres is hot. There, I said it. But seriously -- what is it about medical dramas that make them as standard to the tv line-up as the evening news? I think it has something to do with the public's desire to see doctors as normal people. Whether that's to humanize you all and make you less scary, or to fill our fantasy of hot docs in every exam room, it seems like we can't get away from them. But no, I'm not so naive as to think your lives are like that. Duh.
2. Nurse know best. Doctor's may make all of the big decisions in a patients care, but the nurses are the ones that really get to know the patients, and see them on a daily (if not hourly) basis. Given this, those of us who enter into hospitals become quite attached to our nurses, and as parents of a child in their care we become quite protective. The message to you, dear Resident, is a word of caution: treat the nurses well. If you don't, they tell us -- and while they may not be able to respond, I am more than happy to impale you on an IV pole.
3. You may "wanna new drug", but we don't. I read somewhere a few months ago that the average hospital patient is given the incorrect dose of medication once a day. I wouldn't have believed it unless I'd seen it, but I have. See, while the nurses give the meds, you write the orders for them. And, although you might find this shocking, we are paying attention. So, you might want to consider actually reading the 30 copies we provide of our son's medication schedule every time we come to visit. Or, if you're feeling like accessing that rare mental process called "common sense", you could log on to his electronic medical file and see it for yourself. Just a thought.
4. Let me out. Let's face it -- you're busy people with a lot to do. Patients have needs constantly -- and somewhere in there you have to sleep. Why burden yourself with patients who don't need to be there? Of course, I am talking about those of us who are twiddling our thumbs, awaiting discharge. Normally, we can see the attending physician at 8am, and not have discharge paperwork completed until 2 in the afternoon. Once, while in the midst of what should have been a simple ER visit, we spent more time waiting for the discharge paperwork than we did actually being seen! I know you have a lot to do before getting to that paperwork, but the faster you get us out, the more money you save - both the insurance industry, and the hospital. Think of the brownie-points! NOTE: When completing paperwork, remember #3 -- correct medication instructions for the trip home would be helpful.
5. Parents - the anti-drug. There comes a time in the journey of families like ours when we know more about our children's medical conditions, and the nuances of his/her treatment, than you. Respect that -- it will prevent me from wanting to hit you when you ask something stupid. Oh, and asking me if I'm a doctor when I make suggestion as to my son's current condition is not really a compliment. In fact, it fills me with dread that something that would come out of my simple mind seems revolutionary to you.
6. One last thing. Anti-nausea medications are the cornerstone of effective cancer treatment. Having them available only in oral form for children with cancer is, to put it bluntly, stupid. Do something about that, would you? Patches, lotions, anything. Could you look into that? Thanks.
Now, get to work.
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