Wednesday, April 30, 2008
"just another tricky day" --pete townshend
Adam is writing a thank you note to my friend and coworker Marie and her husband. They gave Adam some awesome stuff. Adam has received many wonderful gifts and we continue to have to remind him to be thankful and to understand that these are not just gifts for the heck of it, but gifts of love and support. He gets it.....sometimes. He is 11 after all.
Adam had a good day yesterday, his birthday. We took him and his friend Antonio to PizzaPerfect. Our favorite. Adam's stomach was not feeling so hot but his mood stayed up. When we got home we finished off the cupcakes Adam and Martha had taken to Meigs earlier and then Adam, Antonio and me had a nerf gun war. Talk about therapeutic. Nerf guns are great, like paint ball with out all the mess. It was two on one, and I must say that I held my own.
Each good day counts. Today has been pretty good as well. Adam's home bound teacher came over and he is keeping up but I don't think he is in any real danger of not proceeding on to the 6th grade.
We had an impromptu dinner with our neighbors and friends, John, Julia and their kids, Fin and Morgan. Delicious lasagna provided by one of Martha's coworkers, Kris W. It was really good. And the apple pie was fantastic!
Tomorrow Adam goes for his weekly outpt chemo. Shouldn't be too bad. His white blood count is going down as expected so we will have to watch it for the next few days.
Have a good night.
ps--I would like to send a special (and belated) happy birthday to my nephews, Tucker and Scott. Welcome to the terrible twos.
Adam had a good day yesterday, his birthday. We took him and his friend Antonio to PizzaPerfect. Our favorite. Adam's stomach was not feeling so hot but his mood stayed up. When we got home we finished off the cupcakes Adam and Martha had taken to Meigs earlier and then Adam, Antonio and me had a nerf gun war. Talk about therapeutic. Nerf guns are great, like paint ball with out all the mess. It was two on one, and I must say that I held my own.
Each good day counts. Today has been pretty good as well. Adam's home bound teacher came over and he is keeping up but I don't think he is in any real danger of not proceeding on to the 6th grade.
We had an impromptu dinner with our neighbors and friends, John, Julia and their kids, Fin and Morgan. Delicious lasagna provided by one of Martha's coworkers, Kris W. It was really good. And the apple pie was fantastic!
Tomorrow Adam goes for his weekly outpt chemo. Shouldn't be too bad. His white blood count is going down as expected so we will have to watch it for the next few days.
Have a good night.
ps--I would like to send a special (and belated) happy birthday to my nephews, Tucker and Scott. Welcome to the terrible twos.
Tuesday, April 29, 2008
11
As it happens the closest thing I have to a spiritual advisor is an African American woman named Yolanda who works with me at the hospital. Who else could spiritually advise this old skeptical catholic other than a spirited woman from a Black non-denominational church? Every day Yo checks in on me. Every day she tells me that she is praying for Adam and my entire family. Today when I got to work Yo once again asked how I was doing and she could see the answer on my face. I told her about my anger (see previous post) and she listened. Then she asked a simple question. 'Is your anger about your pride?' She went on, 'Pride leads to destruction, and destruction leads to the fall.' She nailed me. I sat for a short while, thought, prayed and breathed. I met with the Medical Director as scheduled and then I ran to my car and drove home and made my apology. Yo had said 'Apologizing can be liberating.' Amen sister..... Yolanda is like the Buddha of the Black Church. She always has exactly the right thing to say at exactly the right moment. This wasn't the first time that I took action based on her input.
Adam turns 11 years old today. Yesterday Adam had a good day. His tummy wasn't hurting, his energy level increased throughout the day and his wonderful sense of humor was back. Today I think he will feel better still. This seems to be the pattern with the inpatient chemo. A few days out and he begins to come back to himself. Today he goes to Meigs Magnet to deliver Superman Cup Cakes to his class. I know he is excited to see his class mates and maybe, though he wouldn't put it this way, feeling bitter sweet that he can not stay with them. Adam told me yesterday he wants to have a spend the night party with his closest friends. I think we can make that happen.
Juju and Bear stayed until he woke up, which was a little late due to staying up a little late last night, and showered him with 'Happy Birthdays', gifts and love. They are now on the road back to Fairhope. It was a blessing having them here to help out.
Sitting on our mantel piece are many cards and gifts, maybe more than usual for a birthday, from near and far. Yesterday one of my coworkers, Marie, presented me with two care packages; one for Adam and one for Camille. How thoughtful to remember Camille. Marie's husband is a graphic artist and included in each package was a mounted illustration that he had designed. Superman for Adam (of course), which is way cool, and Tweety Bird for Camille (how appropriate).
I feel ashamed that I let my own petty ego lead to such anger yesterday and this morning in light of all the wonderful support we are getting from all corners. Today I am renewing my efforts to find tranquility moment by moment, while at the same time dealing with my own too fragile ego.
Adam turns 11 years old today. Yesterday Adam had a good day. His tummy wasn't hurting, his energy level increased throughout the day and his wonderful sense of humor was back. Today I think he will feel better still. This seems to be the pattern with the inpatient chemo. A few days out and he begins to come back to himself. Today he goes to Meigs Magnet to deliver Superman Cup Cakes to his class. I know he is excited to see his class mates and maybe, though he wouldn't put it this way, feeling bitter sweet that he can not stay with them. Adam told me yesterday he wants to have a spend the night party with his closest friends. I think we can make that happen.
Juju and Bear stayed until he woke up, which was a little late due to staying up a little late last night, and showered him with 'Happy Birthdays', gifts and love. They are now on the road back to Fairhope. It was a blessing having them here to help out.
Sitting on our mantel piece are many cards and gifts, maybe more than usual for a birthday, from near and far. Yesterday one of my coworkers, Marie, presented me with two care packages; one for Adam and one for Camille. How thoughtful to remember Camille. Marie's husband is a graphic artist and included in each package was a mounted illustration that he had designed. Superman for Adam (of course), which is way cool, and Tweety Bird for Camille (how appropriate).
I feel ashamed that I let my own petty ego lead to such anger yesterday and this morning in light of all the wonderful support we are getting from all corners. Today I am renewing my efforts to find tranquility moment by moment, while at the same time dealing with my own too fragile ego.
Monday, April 28, 2008
unfinished
I can't be all things to all people. Not that I ever thought I could but dealing with Adam's treatment has certainly underlined the point. At work I can be mr. congenial, friendly, problem solver, all around good guy, but there is only so much of that to go around. Today my own fuse has burned down. No, I did not go off on my kids. I went off on someone else (not Martha either).
On a positive note: Adam had a good day. His mood is up, way up, he had a visit from a couple of friends. he is excited that his birthday is tomorrow and he seemed eager to hang out with me and Camille when I got home from work.
On a positive note: Adam had a good day. His mood is up, way up, he had a visit from a couple of friends. he is excited that his birthday is tomorrow and he seemed eager to hang out with me and Camille when I got home from work.
Sunday, April 27, 2008
spirit
Fr. Maxi was the Concilibrant with Fr. Breen today. He spoke the homily. His point was that the holy spirit was present through history. He compared today's reading from the Gospel of John to earlier readings from scripture: Genesis etc. It was a pretty good talk. Fr. Maxi's Ghana-eze accent was charming. He was well spoken and preacherly. But talk of the 'holy spirit' range a little cold and distant despite the fact that the intent of the preaching was the opposite. Oh well. We got on with the day.
Adam is still recovering from what I consider his harrowing experience on Thursday, Friday and Saturday morning at Vandy Childrens Hospital on the cancer ward. He is feeling weak, out of sorts, asocial, and just plain shitty. Martha and I even talked about it earlier in the evening. 'I am worried about Adam', Martha said. 'What do you want me to do about it' I stupidly responded. There is no answer. Adam is feeling down. What the hell are we supposed to do?
Around 730 pm Adam's friend JP, and his friend Ty, showed up, unexpectedly, and asked to play with Adam. My gosh, here it was, the 'holy spirit' coming to visit at my house. Adam may not respond to our encouragements to talk, feel better, join us for dinner, but a couple of 10 year olds showing up was magic. Almost immediately Adam was playing, shooting his nerf gun, having fun, with JP and Ty. JP's dad showed up around 830 to pick him up. JP says he will be back tomorrow because the teachers are having 'inservice' so there is no school. Hopefully the holy spirit will stick around for a day or so.
Adam is still recovering from what I consider his harrowing experience on Thursday, Friday and Saturday morning at Vandy Childrens Hospital on the cancer ward. He is feeling weak, out of sorts, asocial, and just plain shitty. Martha and I even talked about it earlier in the evening. 'I am worried about Adam', Martha said. 'What do you want me to do about it' I stupidly responded. There is no answer. Adam is feeling down. What the hell are we supposed to do?
Around 730 pm Adam's friend JP, and his friend Ty, showed up, unexpectedly, and asked to play with Adam. My gosh, here it was, the 'holy spirit' coming to visit at my house. Adam may not respond to our encouragements to talk, feel better, join us for dinner, but a couple of 10 year olds showing up was magic. Almost immediately Adam was playing, shooting his nerf gun, having fun, with JP and Ty. JP's dad showed up around 830 to pick him up. JP says he will be back tomorrow because the teachers are having 'inservice' so there is no school. Hopefully the holy spirit will stick around for a day or so.
Saturday, April 26, 2008
2 down, 2 to go
Adam's second night at Vandy went well. He slept. He woke up a little nauseous but was ready, at last, to be discharged. Adam has two more inpatient stays ahead--thank God.
He is here now, hanging out with Camille and watching cartoons. Antonio may come over for a visit tomorrow afternoon. Antonio's energy may be 'what the doctor ordered'.
Juju and Bear are out getting tonight's dinner taken care of, Martha is taking a nap and I am recovering from the 13.1 I ran this morning (and every step was a prayer).
To Meg, "Vibes received."
Have a lovely Saturday.
He is here now, hanging out with Camille and watching cartoons. Antonio may come over for a visit tomorrow afternoon. Antonio's energy may be 'what the doctor ordered'.
Juju and Bear are out getting tonight's dinner taken care of, Martha is taking a nap and I am recovering from the 13.1 I ran this morning (and every step was a prayer).
To Meg, "Vibes received."
Have a lovely Saturday.
Friday, April 25, 2008
5 months
Pain in your child's face is hard to handle. Not a booboo in need of a kiss and a bandaid, but pure pain. Adam is still in the hospital tonight. We thought that this second inpt chemo treatment stay would be easier. He got in earlier. He was practically a pro. But last night was the torture we had feared. Adam was in pain. And short of holding him, encouraging him (which must have seemed completely useless to him), there was nothing I could do. This wasn't the nausea we had expected. This was pain coming from deep in his body. And I was impotent to do anything.
Adam is feeling a little better now but he is still nauseous and continues to have some GI pain. So he is spending a second night in a row at Vandy.
My folks are up here helping out with Camille. We continue to get loads of support from our friends and family across America (and the world--thanks Anton). But last night, what I saw in my son's face was loneliness. And not the loneliness of the friendless but that of the inaccessible. Adam's situation is not that unusual. There are thousands of kids with cancer, many with much worse forms, but Adam's own experience, his pain and anguish are his alone. Holding him last night, telling him that I was there, encouraging him, telling him that I loved him, all seemed like a limp response to the monster that was invading him.
Now he sleeps. And I hope he will stay asleep to make up for what he did not get last night and to let Martha sleep for more than 30 minutes at a time.
I run the country music half marathon tomorrow. I haven't trained like I should but I think I can finish. Every step will be a prayer for health, comfort and connection away from loneliness for my boy. The minor pain I am sure to feel will be a reminder of the very real pain inflicted on him. And the relief of reaching the end, the endorphin high, will be a preview of what is to come as Adam moves through this thing. On the cancer unit today I saw a colorful sign for a little girl who had reached her final chemo treatment; "Congratulations Michelle!" it read. We have five months left.
Please continue to send your good wishes and prayers. A special thanks to Meriam's family, especially John Paul and his class. The license plates are coming in nicely. It all counts.
Adam is feeling a little better now but he is still nauseous and continues to have some GI pain. So he is spending a second night in a row at Vandy.
My folks are up here helping out with Camille. We continue to get loads of support from our friends and family across America (and the world--thanks Anton). But last night, what I saw in my son's face was loneliness. And not the loneliness of the friendless but that of the inaccessible. Adam's situation is not that unusual. There are thousands of kids with cancer, many with much worse forms, but Adam's own experience, his pain and anguish are his alone. Holding him last night, telling him that I was there, encouraging him, telling him that I loved him, all seemed like a limp response to the monster that was invading him.
Now he sleeps. And I hope he will stay asleep to make up for what he did not get last night and to let Martha sleep for more than 30 minutes at a time.
I run the country music half marathon tomorrow. I haven't trained like I should but I think I can finish. Every step will be a prayer for health, comfort and connection away from loneliness for my boy. The minor pain I am sure to feel will be a reminder of the very real pain inflicted on him. And the relief of reaching the end, the endorphin high, will be a preview of what is to come as Adam moves through this thing. On the cancer unit today I saw a colorful sign for a little girl who had reached her final chemo treatment; "Congratulations Michelle!" it read. We have five months left.
Please continue to send your good wishes and prayers. A special thanks to Meriam's family, especially John Paul and his class. The license plates are coming in nicely. It all counts.
Thursday, April 24, 2008
Adam's favorite C&H quote from memory.
Calvin's Mom: How did you break these dishes?
Calvin: I was carrying too many and they fell.
Mom: You know what your problem is, you got no common sense!
Calvin: I have plenty of common sense, I just choose to ignore it.
Calvin: I was carrying too many and they fell.
Mom: You know what your problem is, you got no common sense!
Calvin: I have plenty of common sense, I just choose to ignore it.
random observations
People who don't know the story yet come up to me at work and comment on my very short hair cut. Sometimes they compliment or sometimes they joke about how extreme it is etc. At this moment I have to decide: do I chuckle and make some comment about getting a summertime doo or joke that this is my economical six month hair cut. Or do I lay the bomb on them, suck the air out of the room, and tell them that I got this cut in 'solidarity' with my son whose been in treatment for chemo and has lost his hair because he has been diagnosed with cancer. On the one hand, I am not interested in making folks feel uncomfortable, on the other, some of these people know me and would feel shorted some how if I wasn't willing to share this information. I don't know. Yesterday it happened several times. And each time I had to make a decision. Looking back I worry that I may be making a judgement about the person asking. Are they 'cancer news' worthy or not? (apologies to seinfeld).
This happened to Adam and Martha yesterday: They were going to the 'Donut Den' in Greenhills. Martha said that as they were pulling up she noticed a bunch of teenagers hanging out front. She thought, "Is this the moment when Adam will get harassed about his bald head?" She didn't tell me this but I also think she probably thought she was being a little paranoid. Who would say anything about a kid who is obviously getting chemo?
As Adam and Martha passed by the teens one of them said "Look at the bald kid." Or something to that effect. Well there it was. They both entered the donut shop. Adam muttered "stupid kid" but otherwise seemed nonplussed. Martha didn't handle it the same way. She went back out and stared the kid down; trying not to go 'medieval' on his ass. Martha wasn't sure exactly which kid had let loose with the idiot comment so she contained herself. Whoever that kid is he should consider himself lucky. Martha would have, could have, carved him up pretty good. She told me later, "I would have scratched his eyes out. I would have been arrested for assault." What cop would arrest the mother of a cancer patient for defending the honor of her kid. Who knows? The kid was lucky. Martha and I talked about it later and optimistically hoped that some other kid in the group got onto the idiot. Teens are teens, that's what I tell myself but in the same situation, if I had known who, I may have let all the sublimated feelings toward every idiot teen I have dealt with, and I have dealt with a few, come to the surface. And it could have been pretty ugly. When it comes to our kids I think we are all cave men, primal, like a bear and her cub, don't f%#k with the cub!
My good friend Kenny, not known for his soft cuddly side, left a voice mail on my cell. We had lunch together earlier yesterday but I guess he wanted to emphasize his concern. Kenny has his own well earned issues with religion and spirituality so when he left a message that he and his wife Andrea are thinking about Adam and us a lot and to the extent that he prays he will pray for Adam I knew Kenny was leaving a gift. Thanks Kenny (who by the way is balder than Adam).
Adam and I are at this very moment at Vandy Childrens. He is getting fluids in preparation for the chemo triple play later. This is the bad one, the chemo that makes Adam vomit. He is taking it as it comes. I noticed today that Adam is cooperative, but also a little passive resistant. Not in a 'difficult patient' sort of way but in his refusal to go along with pretending to have a good time during chemo he, in his own way, is giving the finger to cancer. Martha has made the point that even though Vandy Childrens wants you to think you are at Disney, this is still a hospital, this is still a cancer clinic, and it aint no fun.
To end today, a special 'shout out' to my sister in law in law Jeannette. Jeannette has been sending us frequent emails of support and has been trading comments with me about all this stuff. That helps. Jeannettes constant optimism, which even comes through in her emails, is encouraging and its own sort of miracle.
peace.
This happened to Adam and Martha yesterday: They were going to the 'Donut Den' in Greenhills. Martha said that as they were pulling up she noticed a bunch of teenagers hanging out front. She thought, "Is this the moment when Adam will get harassed about his bald head?" She didn't tell me this but I also think she probably thought she was being a little paranoid. Who would say anything about a kid who is obviously getting chemo?
As Adam and Martha passed by the teens one of them said "Look at the bald kid." Or something to that effect. Well there it was. They both entered the donut shop. Adam muttered "stupid kid" but otherwise seemed nonplussed. Martha didn't handle it the same way. She went back out and stared the kid down; trying not to go 'medieval' on his ass. Martha wasn't sure exactly which kid had let loose with the idiot comment so she contained herself. Whoever that kid is he should consider himself lucky. Martha would have, could have, carved him up pretty good. She told me later, "I would have scratched his eyes out. I would have been arrested for assault." What cop would arrest the mother of a cancer patient for defending the honor of her kid. Who knows? The kid was lucky. Martha and I talked about it later and optimistically hoped that some other kid in the group got onto the idiot. Teens are teens, that's what I tell myself but in the same situation, if I had known who, I may have let all the sublimated feelings toward every idiot teen I have dealt with, and I have dealt with a few, come to the surface. And it could have been pretty ugly. When it comes to our kids I think we are all cave men, primal, like a bear and her cub, don't f%#k with the cub!
My good friend Kenny, not known for his soft cuddly side, left a voice mail on my cell. We had lunch together earlier yesterday but I guess he wanted to emphasize his concern. Kenny has his own well earned issues with religion and spirituality so when he left a message that he and his wife Andrea are thinking about Adam and us a lot and to the extent that he prays he will pray for Adam I knew Kenny was leaving a gift. Thanks Kenny (who by the way is balder than Adam).
Adam and I are at this very moment at Vandy Childrens. He is getting fluids in preparation for the chemo triple play later. This is the bad one, the chemo that makes Adam vomit. He is taking it as it comes. I noticed today that Adam is cooperative, but also a little passive resistant. Not in a 'difficult patient' sort of way but in his refusal to go along with pretending to have a good time during chemo he, in his own way, is giving the finger to cancer. Martha has made the point that even though Vandy Childrens wants you to think you are at Disney, this is still a hospital, this is still a cancer clinic, and it aint no fun.
To end today, a special 'shout out' to my sister in law in law Jeannette. Jeannette has been sending us frequent emails of support and has been trading comments with me about all this stuff. That helps. Jeannettes constant optimism, which even comes through in her emails, is encouraging and its own sort of miracle.
peace.
Wednesday, April 23, 2008
What's the point of wearing your favorite rocketship underpants if nobody ever asks to see 'em?
--Calvin and Hobbes
Tomorrow Adam goes back into Vandy Childrens for his second overnight chemo treatment. This time Martha is taking a much deserved break and I will be with Adam until Friday morning.
I have left a message with Gilda's Club. It may be time for Adam to benefit from a support group. He is doing pretty good and even seems like he is in a better mood over the past couple of days but Martha and I think he probably needs to be around others who can truly identify with what he can't even express. He probably needs to be able to let loose with a few choice words about what he's going through without having to worry he will offend----not that we would blame him...
When Adam gets through this, maybe even years from now, he will be stronger and better. I am not ready to say that the pain, fear, and lonliness he is experiencing now is worth that future benefit but I think to deal with this in a healthy way I have to believe that. He will be Superman. He would have faced one of the greatest fears we have in the modern age---the big C. And he would have moved through it.
Martha and I are filling out these questionaires for a research study being run by Vandy graduates (I guess) focusing on how families communicate and cope when their child has been diagnosed. Clearly we are fortunate to have Adam. Based on the questions and survey items I read Adam must be doing really well compared to other folks in similar situations. This has almost nothing to do with us. Adam's natural disposition, his character, his own self is such a gift. From God? Nature/Nurture. I have to go with nature. Isn't that the same as saying God, Creator, Universe? Well, thanks Universe.
I'm pissed at the Universe, but I am also grateful for the blessing it has bestowed on our kids. Camille has been absolutely fantastic through all of this. Would I be so grateful for Adam's hidden strength if it wasn't for being so f'ing pissed that he has cancer. Being pissed or angry isn't really useful. I am not pissed at any one or even God. Words fail. Maybe anger isn't the emotion. Sad, regretful, what? How about 'vulnerable'? Or exposed? Or weak?
Ok enough, tonight Martha and I take another break. Elvis Costello is playing at the Ryman. You must think we are bad parents but living in 'music city' sometimes presents opportunities to see some great music. And besides Adam still loves us getting out of his hair. He has never been a clingy child. Camille's teacher, Ms. Kelley, is coming over again. For Camille, having Ms. Kelley come over is like Elvis Costello come over for us. She's like a rock star!
--Calvin and Hobbes
Tomorrow Adam goes back into Vandy Childrens for his second overnight chemo treatment. This time Martha is taking a much deserved break and I will be with Adam until Friday morning.
I have left a message with Gilda's Club. It may be time for Adam to benefit from a support group. He is doing pretty good and even seems like he is in a better mood over the past couple of days but Martha and I think he probably needs to be around others who can truly identify with what he can't even express. He probably needs to be able to let loose with a few choice words about what he's going through without having to worry he will offend----not that we would blame him...
When Adam gets through this, maybe even years from now, he will be stronger and better. I am not ready to say that the pain, fear, and lonliness he is experiencing now is worth that future benefit but I think to deal with this in a healthy way I have to believe that. He will be Superman. He would have faced one of the greatest fears we have in the modern age---the big C. And he would have moved through it.
Martha and I are filling out these questionaires for a research study being run by Vandy graduates (I guess) focusing on how families communicate and cope when their child has been diagnosed. Clearly we are fortunate to have Adam. Based on the questions and survey items I read Adam must be doing really well compared to other folks in similar situations. This has almost nothing to do with us. Adam's natural disposition, his character, his own self is such a gift. From God? Nature/Nurture. I have to go with nature. Isn't that the same as saying God, Creator, Universe? Well, thanks Universe.
I'm pissed at the Universe, but I am also grateful for the blessing it has bestowed on our kids. Camille has been absolutely fantastic through all of this. Would I be so grateful for Adam's hidden strength if it wasn't for being so f'ing pissed that he has cancer. Being pissed or angry isn't really useful. I am not pissed at any one or even God. Words fail. Maybe anger isn't the emotion. Sad, regretful, what? How about 'vulnerable'? Or exposed? Or weak?
Ok enough, tonight Martha and I take another break. Elvis Costello is playing at the Ryman. You must think we are bad parents but living in 'music city' sometimes presents opportunities to see some great music. And besides Adam still loves us getting out of his hair. He has never been a clingy child. Camille's teacher, Ms. Kelley, is coming over again. For Camille, having Ms. Kelley come over is like Elvis Costello come over for us. She's like a rock star!
Tuesday, April 22, 2008
karma and gratitude ganging up on me
It is strange to be the recipient of charity. It is humbling. I am humbled. Anna, our house keeper who has become our friend, has organized our friends and work mates to bring prepared meals to our home. This is incredibly helpful as Martha has had to take a lot of time home from work to look after Adam. Having a delicious dinner brought to your house makes it all a little bit more bearable. Tonight Sara, a physical therapist Martha works with, fixed us chicken soup, salad, bread and Adam's favorite, chocolate brownies.
Karma and gratitude are ganging up on me. As I said a few weeks ago, I will be spending a lot of time, perhaps the rest of my life, making up for all this good will, love and support.
To Anna, Sarah, our neighbors who have been so supportive, our distant friends and relatives and everyone else please know that we are thinking of and thanking you tonight. God bless you.
Adam is feeling better today. He seems a lot more at piece with his hairless head than I do. His mood is up today. He is asking more questions about his treatment. But still obsessed with legos and teasing his little sister. He is excited about his approaching birthday and the visit he will make to his class with cup cakes in hand.
Any routine I feel is illusionary and I continue to be both exhausted by the daily grind, depressed that we have many months ahead of us and strangely proud of my son's casual bravery.
In all of this I have neglected to give thanks to Martha. It is she who has stayed steady with Adam and even more amazingly, with me. It is my dark moods that she has tolerated, even more than usual, so well. Today I came home inexplicably in a crappy frame of mind. Martha was on the porch, drinking a beer, enjoying the day and waiting for me. She offered me a beer and invited me to join her. I initially blew her off, basically telling her to let me have my bad mood. She followed me with an open beer and invited me again to join her, saying, "It's more fun to drink a beer with somebody else, even when that somebody else is in a bad mood, than to drink a beer alone." Touche'. I love you Martha.
Karma and gratitude are ganging up on me. As I said a few weeks ago, I will be spending a lot of time, perhaps the rest of my life, making up for all this good will, love and support.
To Anna, Sarah, our neighbors who have been so supportive, our distant friends and relatives and everyone else please know that we are thinking of and thanking you tonight. God bless you.
Adam is feeling better today. He seems a lot more at piece with his hairless head than I do. His mood is up today. He is asking more questions about his treatment. But still obsessed with legos and teasing his little sister. He is excited about his approaching birthday and the visit he will make to his class with cup cakes in hand.
Any routine I feel is illusionary and I continue to be both exhausted by the daily grind, depressed that we have many months ahead of us and strangely proud of my son's casual bravery.
In all of this I have neglected to give thanks to Martha. It is she who has stayed steady with Adam and even more amazingly, with me. It is my dark moods that she has tolerated, even more than usual, so well. Today I came home inexplicably in a crappy frame of mind. Martha was on the porch, drinking a beer, enjoying the day and waiting for me. She offered me a beer and invited me to join her. I initially blew her off, basically telling her to let me have my bad mood. She followed me with an open beer and invited me again to join her, saying, "It's more fun to drink a beer with somebody else, even when that somebody else is in a bad mood, than to drink a beer alone." Touche'. I love you Martha.
Monday, April 21, 2008
checking in
Aunt Cathy sent Adam a 50 year old plate from Massachusetts. Very cool, gnarly old thing. My sister in law Jeannette wrote me telling me of her prayer routine.
Martha and I are going out tonight. We have tickets to see Nick Lowe and Ron Sexsmith. Both playing around the corner. Should be a great show. Camille's pre school teacher is baby sitting. Adam will have us out of his hair for a few hours.
To cover his bare head today Adam wore his Alabama straw hat as he and his mother walked to pick up Camille from school. It suits him.
Martha and I are going out tonight. We have tickets to see Nick Lowe and Ron Sexsmith. Both playing around the corner. Should be a great show. Camille's pre school teacher is baby sitting. Adam will have us out of his hair for a few hours.
To cover his bare head today Adam wore his Alabama straw hat as he and his mother walked to pick up Camille from school. It suits him.
Sunday, April 20, 2008
on Lu and God by email with apologies to my cousin
Carson to Us:
Lu died when William was about six weeks old. When he was a newborn, I had a horrible time leaving him to sleep, as I was worried about SIDS, choking, a really big booger getting stuck in his tiny nostril, invading aliens and any other horror one can imagine in a sleep deprived, new mother state. One of the few things that gave me comfort and allowed me to leave him to go to sleep was visualizing Lu standing at the foot of his bed, with her pocket book over her arm watching over my baby. I have read your blogs on prayer and breathing. For me, I often feel God in thinking and remembering Lu, Mimi and my other grandmother and their love for me. I offer my visualization of Lu watching over Adam, you and Martha and lending you strength and comfort. Carson
Me to Carson:
Carson,
Thanks for making me think of Lu. She was the ur-grand mother with her ever present purse and what I remember as constant good humor toward her grand children. An image of Lu looking over Adam as he is hooked up to chemo, or wondering if his hair will come back, or having what seems like the longest tummy ache in the world will be helpful. Adam will get through this. I think we will too. His hair suddenly falling out shook us out of our routine. Maybe that's a good thing, and maybe not.
peace and love
E
Lu died when William was about six weeks old. When he was a newborn, I had a horrible time leaving him to sleep, as I was worried about SIDS, choking, a really big booger getting stuck in his tiny nostril, invading aliens and any other horror one can imagine in a sleep deprived, new mother state. One of the few things that gave me comfort and allowed me to leave him to go to sleep was visualizing Lu standing at the foot of his bed, with her pocket book over her arm watching over my baby. I have read your blogs on prayer and breathing. For me, I often feel God in thinking and remembering Lu, Mimi and my other grandmother and their love for me. I offer my visualization of Lu watching over Adam, you and Martha and lending you strength and comfort. Carson
Me to Carson:
Carson,
Thanks for making me think of Lu. She was the ur-grand mother with her ever present purse and what I remember as constant good humor toward her grand children. An image of Lu looking over Adam as he is hooked up to chemo, or wondering if his hair will come back, or having what seems like the longest tummy ache in the world will be helpful. Adam will get through this. I think we will too. His hair suddenly falling out shook us out of our routine. Maybe that's a good thing, and maybe not.
peace and love
E
I had to get a couple of more pics from the Friday Night Pizza Party. Above Julia is artfully sculpting Adam's head and below the girls, Camille and Morgan, are admiring her handy work.
CROSSING OVER FIERCELYAdam crossed over last night. Really, he did. That's what they call the transition from Cub Scout to Boy Scout. He earned his Arrow of Light patch. This is the only insignia that is both part of the Cub Scout and Boy Scout uniform. There's a piece of trivia for you. Martha and I are proud because, as unscout like as either of us are, Adam has really stuck with it. Even when he changed schools this year he wanted to continue. He is now a Boy Scout.
It was actually a dramatic sight. Adam, in his mohawk, and his other scout buddies standing by the bonfire as the Scout Master changed their amulets from dark blue to red and gave them their Arrow of Light patches. I've never been accused of too much patriotism, but that did get to me. And Adam did that while feeling pretty bad. His stomach hurts, his mood is a little down and to top it off he had gotten into some kind of stick throwing battle with a scout group from another troop and had sustained a small but gnarly gash on the side of his head.
We had also brought one of Bear and Juju's flags to retire. Adam and his scout buddies Jack and Robbie solemnly placed the flag into the fire as Mr. Thompson read aloud about the history of the flag. It was truly a reverent occasion.
His hair is really falling out now. It's just about gone. Getting the shaved head with mohawk was fun; but there is just no way I can take away from Adm the pain of losing something so basic as your hair.....at age 10. And it happened so suddenly. I thought his hair would thin over time. He came home Friday saying his hair was falling out. By tomorrow it will be basically gone. I shaved his mohawk today because it too had gotten so splotchy.
It was actually a dramatic sight. Adam, in his mohawk, and his other scout buddies standing by the bonfire as the Scout Master changed their amulets from dark blue to red and gave them their Arrow of Light patches. I've never been accused of too much patriotism, but that did get to me. And Adam did that while feeling pretty bad. His stomach hurts, his mood is a little down and to top it off he had gotten into some kind of stick throwing battle with a scout group from another troop and had sustained a small but gnarly gash on the side of his head.
We had also brought one of Bear and Juju's flags to retire. Adam and his scout buddies Jack and Robbie solemnly placed the flag into the fire as Mr. Thompson read aloud about the history of the flag. It was truly a reverent occasion.
His hair is really falling out now. It's just about gone. Getting the shaved head with mohawk was fun; but there is just no way I can take away from Adm the pain of losing something so basic as your hair.....at age 10. And it happened so suddenly. I thought his hair would thin over time. He came home Friday saying his hair was falling out. By tomorrow it will be basically gone. I shaved his mohawk today because it too had gotten so splotchy.
Saturday, April 19, 2008
goddamned birds singing
We are going camping with the scouts today, after Camille's soccer game. I think our mohawks will be a hit. I hope everyone has a great Saturday. Here is a poem by Thomas Lux.
Poem in Thanks
Lord Whoever, thank you for this air
I'm about to in- and exhale, this hutch
in the woods, the wood for the fire,
the light--both lamp and the natural stuff
of leaf-back, fern and wing.
For the piano, the shovel
for ashes, the moth-gnawed
blankets, the stone-cold water
stone-cold: thank you.
Thank you, Lord, coming for
to carry me here--where I'll gnash
it out, Lord, where I'll calm
and work, Lord, thank you
for the goddamn birds singing!
Poem in Thanks
Lord Whoever, thank you for this air
I'm about to in- and exhale, this hutch
in the woods, the wood for the fire,
the light--both lamp and the natural stuff
of leaf-back, fern and wing.
For the piano, the shovel
for ashes, the moth-gnawed
blankets, the stone-cold water
stone-cold: thank you.
Thank you, Lord, coming for
to carry me here--where I'll gnash
it out, Lord, where I'll calm
and work, Lord, thank you
for the goddamn birds singing!
Friday, April 18, 2008
the future is unwritten/to hell with cancer
John and Julia invited us to their Friday night home made pizza party. Great time was had by all and after one or two glasses of red wine we decided to go punk rock on cancer. Adam was all for it. Julia, a surgeon in training, did the deed. I think she did a great job. Thanks to Stan for taking the pictures. My own punk rock fantasy come true. We rock! (and F. cancer!)
Fin looks 'Awesome'!
Thursday, April 17, 2008
Your courage will bring you honor
Good news. Adam's white blood count was good today. He will be able to go to school tomorrow. Adam is excited and we are excited. His put-on about being happy not to be in school has faded. Even one day would be great. Maybe he will be in school next week, Monday through Wednesday. Who knows. We've given up being sure of tomorrow. We are happy for today. Adam's chemo went well today. And he got to hang out with friends in the 'hood today. He studied for his spelling test tomorrow. How normal. How great.
Martha took Adam to our favorite Chinese restaurant, China Town, today. His fortune cookie message read "Your courage will bring you honor." What else can I say.
Thanks to Grand Ma for the cool lego race cars, Uncle Fred and Dee for all the great stuff and Jeannette and David for the Mississippi license plate.
Peace.
Martha took Adam to our favorite Chinese restaurant, China Town, today. His fortune cookie message read "Your courage will bring you honor." What else can I say.
Thanks to Grand Ma for the cool lego race cars, Uncle Fred and Dee for all the great stuff and Jeannette and David for the Mississippi license plate.
Peace.
Wednesday, April 16, 2008
E + R = O
The third chemo treatment is tomorrow. Adam is feeling better, I think, but is feeling a little down and bored. I think he misses school though he may not readily admit that. His school mates, and teachers, continue to give him many signs of support. The cards pour in and one of his class mates sent him a license plate from Louisiana. Many of the cards the home bound teacher brought him today had a SUPERMAN theme. I will post a couple as soon as Martha scans them at work. (Meigs is the best--thank you Ms. Dooley and Garman)
Shortly after I got home today and went out for a run, Adam's friend JP showed up. Which was super for Adam because I had just gotten on to him about getting the home bound 'home work' done. I had no problem loosening up for Adam to spend time with a good buddy. They are still out right now. It is a beautiful late afternoon!
Yesterday our friend Mel, who over the years has helped make our house livable (contractor extraordinaire), came to visit. Martha had asked him to look at our not yet completed new 'mud room'. He is going to help us install cabinets and tile. Mel and his wife Pam are really good people. Mel's oldest son Todd died of cancer in the 70s. Todd was diagnosed with Leukemia at age 6. The Leukemia was basically cured but Todd died of another type of cancer caused by the radiation therapy at age 18.
Mel had told us about Todd before but now of course hearing about his experience has a different feel. Mel had cautioned Martha a few weeks ago that some folks just wouldn't know how to handle the news that Adam had been diagnosed with cancer. This has been true to some extent but I think we have truly benefited from advances made not only in the science of cancer treatment but also the understanding of how to work with patients and families by the doctors, nurses, social workers and people in general. The Childrens Cancer Center has been very good about attending to our social and spiritual needs. They have created and gathered resources that Mel and his family just did not have. Mel told me that he and other parents started a group called "Parents for Heroes". They worked with kids with cancer, their siblings and their families. They even had Santa Claus come to visit not only the patients but their brothers and sisters. Santa would already know all the kids by name. Wow! This was before the Internet when information about cancer diagnoses and treatment options was hard to come by. Mel helped build a cancer resource library. We are the beneficiaries of parents like Mel. I know Mel is reading this blog........Thank You Mel!
I helped to interview a possible new director at work today. His name is Mark. Mark and I are acquaintances and have a mutual good friend. He had already called me to ask about Adam and if there was any thing he could do. (Again we have gained from Mel's experience.) During the interview today Mark explained a formula he uses in management: E+R=O. E is for 'Event', which is neutral and can not be controlled; R is for 'Response' which is what we do in response to the event; and O is for 'Outcome'. Mark was talking about his management style; I wondered if he also was trying to communicate directly to me about how to view Adam's cancer. The E is Adam's cancer. It is what it is. No one's fault. God didn't do it. I have no interest in being angry or mad about it. R is what we do about it. This includes everything. All the positive thoughts and prayers as you are reading this, the work of the doctors, nurses, social workers and other hospital staff, Adam's school mates sending homemade cards, emails and responses to this blog, tears, memories, favors like Jody baking use delicious bread or Regine letting (practically ordering us) to use her washer drier, Vivian inviting Martha to go see a play tonight.....you get the drift. It's the R in the equation that matters. I hope and pray for a good O....but we have no control over the O, only influence. I am very confident that there will be a positive Outcome but the only thing I can control is my response.
Peace.
Shortly after I got home today and went out for a run, Adam's friend JP showed up. Which was super for Adam because I had just gotten on to him about getting the home bound 'home work' done. I had no problem loosening up for Adam to spend time with a good buddy. They are still out right now. It is a beautiful late afternoon!
Yesterday our friend Mel, who over the years has helped make our house livable (contractor extraordinaire), came to visit. Martha had asked him to look at our not yet completed new 'mud room'. He is going to help us install cabinets and tile. Mel and his wife Pam are really good people. Mel's oldest son Todd died of cancer in the 70s. Todd was diagnosed with Leukemia at age 6. The Leukemia was basically cured but Todd died of another type of cancer caused by the radiation therapy at age 18.
Mel had told us about Todd before but now of course hearing about his experience has a different feel. Mel had cautioned Martha a few weeks ago that some folks just wouldn't know how to handle the news that Adam had been diagnosed with cancer. This has been true to some extent but I think we have truly benefited from advances made not only in the science of cancer treatment but also the understanding of how to work with patients and families by the doctors, nurses, social workers and people in general. The Childrens Cancer Center has been very good about attending to our social and spiritual needs. They have created and gathered resources that Mel and his family just did not have. Mel told me that he and other parents started a group called "Parents for Heroes". They worked with kids with cancer, their siblings and their families. They even had Santa Claus come to visit not only the patients but their brothers and sisters. Santa would already know all the kids by name. Wow! This was before the Internet when information about cancer diagnoses and treatment options was hard to come by. Mel helped build a cancer resource library. We are the beneficiaries of parents like Mel. I know Mel is reading this blog........Thank You Mel!
I helped to interview a possible new director at work today. His name is Mark. Mark and I are acquaintances and have a mutual good friend. He had already called me to ask about Adam and if there was any thing he could do. (Again we have gained from Mel's experience.) During the interview today Mark explained a formula he uses in management: E+R=O. E is for 'Event', which is neutral and can not be controlled; R is for 'Response' which is what we do in response to the event; and O is for 'Outcome'. Mark was talking about his management style; I wondered if he also was trying to communicate directly to me about how to view Adam's cancer. The E is Adam's cancer. It is what it is. No one's fault. God didn't do it. I have no interest in being angry or mad about it. R is what we do about it. This includes everything. All the positive thoughts and prayers as you are reading this, the work of the doctors, nurses, social workers and other hospital staff, Adam's school mates sending homemade cards, emails and responses to this blog, tears, memories, favors like Jody baking use delicious bread or Regine letting (practically ordering us) to use her washer drier, Vivian inviting Martha to go see a play tonight.....you get the drift. It's the R in the equation that matters. I hope and pray for a good O....but we have no control over the O, only influence. I am very confident that there will be a positive Outcome but the only thing I can control is my response.
Peace.
Tuesday, April 15, 2008
A prayer given by a friend at work
Creator,
Thank you for each and every day you have
blessed us here on earth.
Thank you for your tender mercies.
Thank you for giving us friends and family
to share these joys with.
I ask You to bless my friends, relatives
and those I care deeply for
who are reading this right now.
Where there is joy, give them continued joy,
Where there is pain, give them your peace and mercy.
Where there is self-doubt, release a renewed confidence.
Where there is need, fulfill their needs.
Bless their homes, families, finances,
their goings and their comings
Amen.
Thank you for each and every day you have
blessed us here on earth.
Thank you for your tender mercies.
Thank you for giving us friends and family
to share these joys with.
I ask You to bless my friends, relatives
and those I care deeply for
who are reading this right now.
Where there is joy, give them continued joy,
Where there is pain, give them your peace and mercy.
Where there is self-doubt, release a renewed confidence.
Where there is need, fulfill their needs.
Bless their homes, families, finances,
their goings and their comings
Amen.
Monday, April 14, 2008
wishful thinking
Martha took Adam to Dr. Kuttesch's office this morning and as we suspected his white blood count is low. This means no school this week and probably he won't be able to go back for the rest of the school year. We were holding out hope and it seemed as if Adam was holding up pretty well last week. But the weekend seems to have depleted him a little. Where would we be without wishful thinking?
On a more positive note Adam's stomach is feeling better. He and Martha walked down to Belmont University earlier today, right down the street, to see what all the hoopla was about. There is a band stand set up and a gathering crowd. As it turns out the Country Music Awards or some such thing is being filmed there later today and Hannah Montana and Billy Ray Cyrus are to make a red carpet appearance. One lady told Martha they had come from Massachusetts just to get a glimpse. Adam is going to ask his friend JP to join him to go spot celebs. JP is a great kid and is being raised by TV resisters, god bless 'em, so he probably wont know who Hannah Montana is.
Martha pointed out yesterday that Adam went from having no prescriptions to having the most in the family by a long shot. Currently the count is 5 (not including the 3 chemo meds).
Adam got another license plate today from Celia and Ward in Mississippi. His collection is growing.
On a more positive note Adam's stomach is feeling better. He and Martha walked down to Belmont University earlier today, right down the street, to see what all the hoopla was about. There is a band stand set up and a gathering crowd. As it turns out the Country Music Awards or some such thing is being filmed there later today and Hannah Montana and Billy Ray Cyrus are to make a red carpet appearance. One lady told Martha they had come from Massachusetts just to get a glimpse. Adam is going to ask his friend JP to join him to go spot celebs. JP is a great kid and is being raised by TV resisters, god bless 'em, so he probably wont know who Hannah Montana is.
Martha pointed out yesterday that Adam went from having no prescriptions to having the most in the family by a long shot. Currently the count is 5 (not including the 3 chemo meds).
Adam got another license plate today from Celia and Ward in Mississippi. His collection is growing.
Sunday, April 13, 2008
catholic buddhist
Adam went to spend the night with his friend Antonio last night. It was Antonio's annual birthday sleep over and I am happy Adam felt up to going (and I am really happy he was invited). When Camille and I picked him up from Antonio's after church he was clearly dragging. Adam's stomach has been hurting (constipation), he is probably anemic and tomorrow we will see where his white blood cell count is. We expect it to be low and that will probably mean he will not go to school this week as we had hoped. These are all predictable effects of the chemo therapy. I just gave him some orange juice with a prescribed laxative mixed in. I hope it does the trick.
At church today the deacon was speaking on prayer. He made the point that often we think of prayer as a way of controlling or contracting God. I don't really know what prayer is. I think I have tended to pray to avoid trouble or to ask for things--like a raise or a good grade. The deacon made a joke saying, "God, I know you are busy, but if you could just sign this contract you could be on your way." It's funny and true, that is how I have thought of prayer in the past. I am not interested in foxhole spirituality; Adam's situation, our situation, has given me an opportunity to explore spirituality but I am making no bargains with God--if you would just take care of Adam I will be a good catholic. No, that is not what this is about. And besides I am happily a bad catholic. I am trying my hardest to pray without asking for things. I can't find the words so often I picture in my mind what or who I want to hold up. I breathe in what is harmful or oppressing and I breathe out what is healthy and empowering. Today when we were on our knees at church I ignored Fr. Breen as he consecrated the bread and wine and just breathed; Buddhists call this Tonglen practice. I don't expect God to make Adam better (I expect this damned chemo to do that). So when I close my eyes or bow my head or turn off the radio on the way to work and just breathe what am I doing? The deacon said that prayer is building a relationship. Prayer is a process. It is not about outcomes or favors. In the mass there are the prayer petitions; 'Please hear our prayer." This lends itself to the very thing I am trying not to do. Please fix this, please fix that. At least it seems that way. I guess the prayer petitions aren't so much a request that these problems be fixed but a prayer that our own compassionate action be called forth---not because that would guarantee a particular outcome but would add loving, kind, and positive energy into the universal mix. Oh brother.....
I am still a Catholic for a couple of reasons: 1) "I know I am not worthy, but only say the word and I shall be healed." That phrase use to thrill me when I was a child because I knew mass was almost over. Now when I hear it I think it is beautiful and underlies that we are all broken; we are all equally not whole, we are all brothers and sisters in God's love. It is a call to humility. At its best Catholicism embraces human weakness and eschews the 'fire and brimstone' focus I see else where. And 2) The Church is so vast and diverse it has room for both folks like me (commie symps, bleeding hearts---face it, Jesus was a leftist) and folks like my Dad (conservative, right wing kooks--I love you Dad; face it, Jesus was a monarchist). But you never know; We had dinner last night with some neighbors at Bill and Tanya's house (great people), both are active Unitarians. Bill is actually in the choir---I know what you are thinking, "Unitarians have a choir!!" Fr. Breen is about the best priest I have ever had as a pastor. When he is gone maybe I will give the Unitarians a try :))
Have a great week. When you are driving to work or play or shopping remember to breathe in and out; and if you could picture Adam, feeling good, running, laughing, (pooping)......
At church today the deacon was speaking on prayer. He made the point that often we think of prayer as a way of controlling or contracting God. I don't really know what prayer is. I think I have tended to pray to avoid trouble or to ask for things--like a raise or a good grade. The deacon made a joke saying, "God, I know you are busy, but if you could just sign this contract you could be on your way." It's funny and true, that is how I have thought of prayer in the past. I am not interested in foxhole spirituality; Adam's situation, our situation, has given me an opportunity to explore spirituality but I am making no bargains with God--if you would just take care of Adam I will be a good catholic. No, that is not what this is about. And besides I am happily a bad catholic. I am trying my hardest to pray without asking for things. I can't find the words so often I picture in my mind what or who I want to hold up. I breathe in what is harmful or oppressing and I breathe out what is healthy and empowering. Today when we were on our knees at church I ignored Fr. Breen as he consecrated the bread and wine and just breathed; Buddhists call this Tonglen practice. I don't expect God to make Adam better (I expect this damned chemo to do that). So when I close my eyes or bow my head or turn off the radio on the way to work and just breathe what am I doing? The deacon said that prayer is building a relationship. Prayer is a process. It is not about outcomes or favors. In the mass there are the prayer petitions; 'Please hear our prayer." This lends itself to the very thing I am trying not to do. Please fix this, please fix that. At least it seems that way. I guess the prayer petitions aren't so much a request that these problems be fixed but a prayer that our own compassionate action be called forth---not because that would guarantee a particular outcome but would add loving, kind, and positive energy into the universal mix. Oh brother.....
I am still a Catholic for a couple of reasons: 1) "I know I am not worthy, but only say the word and I shall be healed." That phrase use to thrill me when I was a child because I knew mass was almost over. Now when I hear it I think it is beautiful and underlies that we are all broken; we are all equally not whole, we are all brothers and sisters in God's love. It is a call to humility. At its best Catholicism embraces human weakness and eschews the 'fire and brimstone' focus I see else where. And 2) The Church is so vast and diverse it has room for both folks like me (commie symps, bleeding hearts---face it, Jesus was a leftist) and folks like my Dad (conservative, right wing kooks--I love you Dad; face it, Jesus was a monarchist). But you never know; We had dinner last night with some neighbors at Bill and Tanya's house (great people), both are active Unitarians. Bill is actually in the choir---I know what you are thinking, "Unitarians have a choir!!" Fr. Breen is about the best priest I have ever had as a pastor. When he is gone maybe I will give the Unitarians a try :))
Have a great week. When you are driving to work or play or shopping remember to breathe in and out; and if you could picture Adam, feeling good, running, laughing, (pooping)......
Saturday, April 12, 2008
Friday, April 11, 2008
cost benefit
The day started with threats of tornadoes and torrential down pours. It has ended with the sun coming out on a beautiful April day.
The wonderful Ms. Dooley at Meigs sent Adam a manila envelope filled with creative homemade get well cards from from his classmates. They came in all shapes and sizes. Some of them were really quite well done and they were all very sweet. Ms. Dooley's own card lamented that Adam not being in school will bring down her class average on the TCAP test. Ms. Dooley teaches science and math; definitely Adam's best subjects. For me Adam missing school is one of the biggest hits he's taking. Adam may not see it that way. I think he is still liking his extended 'holiday.' On the other hand when we mentioned that he may be able to go to school for a few days next week he seemed enthusiastic. Please keep your fingers crossed for a good white blood cell count on Monday morning.
Now that we are 4 weeks into Adam's diagnosis and treatment it almost seems normal and routine. I told my friend Susan at work that I feel guilty for not being as sad, shocked and angry as I was a couple of weeks ago. (Being a bad Catholic gives me a good sense of unearned guilt.) How can living with your child having cancer become routine and normal? Well it does. One can only stay sad, shocked and angry for so long. Adam had his second chemo this week. It went smoothly. He will have his third next week and I am betting it will be just as smooth. At some point in this I expect that Adam will be so at ease at the Cancer Center he will fall back on his usual habit of befriending all the little kids who are getting their chemo at the same time. Adam's natural charm is a little dampened at the moment; who can blame him.
Good stuff that has happened as a result of Adam's diagnosis: realizing how much people love and care for Adam and our family; increased appreciation for good days or even moments; taking nothing for granted (really); making closer connections with friends, workmates and neighbors; getting closer to God/Higher Power/Universe/Buddha; re-reading "When Things Fall Apart"; going to church; breathing/meditation; putting things in perspective (especially at work); being less cynical (so far).
Bad stuff that has happened: hearing that Adam had cancer, watching Martha breakdown at the news, becoming familiar with Vanderbilt Childrens Hospital (it's a great hospital but I hate being there) , watching Adam get stuck for an IV, hearing that Adam will have to get radiation therapy, Adam having to stay home from school, realizing that Adam will have to worry about cancer for the rest of his life, summer plans out the window, summer camp for Adam cancelled, no soccer, the first time I saw Adam vomit from chemo, worrying about side effects.
Add it up.
The wonderful Ms. Dooley at Meigs sent Adam a manila envelope filled with creative homemade get well cards from from his classmates. They came in all shapes and sizes. Some of them were really quite well done and they were all very sweet. Ms. Dooley's own card lamented that Adam not being in school will bring down her class average on the TCAP test. Ms. Dooley teaches science and math; definitely Adam's best subjects. For me Adam missing school is one of the biggest hits he's taking. Adam may not see it that way. I think he is still liking his extended 'holiday.' On the other hand when we mentioned that he may be able to go to school for a few days next week he seemed enthusiastic. Please keep your fingers crossed for a good white blood cell count on Monday morning.
Now that we are 4 weeks into Adam's diagnosis and treatment it almost seems normal and routine. I told my friend Susan at work that I feel guilty for not being as sad, shocked and angry as I was a couple of weeks ago. (Being a bad Catholic gives me a good sense of unearned guilt.) How can living with your child having cancer become routine and normal? Well it does. One can only stay sad, shocked and angry for so long. Adam had his second chemo this week. It went smoothly. He will have his third next week and I am betting it will be just as smooth. At some point in this I expect that Adam will be so at ease at the Cancer Center he will fall back on his usual habit of befriending all the little kids who are getting their chemo at the same time. Adam's natural charm is a little dampened at the moment; who can blame him.
Good stuff that has happened as a result of Adam's diagnosis: realizing how much people love and care for Adam and our family; increased appreciation for good days or even moments; taking nothing for granted (really); making closer connections with friends, workmates and neighbors; getting closer to God/Higher Power/Universe/Buddha; re-reading "When Things Fall Apart"; going to church; breathing/meditation; putting things in perspective (especially at work); being less cynical (so far).
Bad stuff that has happened: hearing that Adam had cancer, watching Martha breakdown at the news, becoming familiar with Vanderbilt Childrens Hospital (it's a great hospital but I hate being there) , watching Adam get stuck for an IV, hearing that Adam will have to get radiation therapy, Adam having to stay home from school, realizing that Adam will have to worry about cancer for the rest of his life, summer plans out the window, summer camp for Adam cancelled, no soccer, the first time I saw Adam vomit from chemo, worrying about side effects.
Add it up.
Thursday, April 10, 2008
Go Pat
Cousin Patrick took the plunge for the cause (StBaldricks.org). Shave or Donate! Pat has raised $555 so far. Way to go Pat!
Adam went to his first outpt chemo treatment today. It went surprisingly well. It only took a few minutes. Probably the shortest time Adam has ever spent at Vandy. The name of the medicine is Vincristine. Its main side effect so far seems to be jaw soreness due to neuropathy. The folks at Vandy are worried that this may cause Adam to not eat and lose weight so he has been prescribed some neurontin. Constipation could also be an issue but that has not been a problem so far.
Wednesday, April 9, 2008
superman
Tonight at work the woman who hired me 13 plus years ago without speaking came up and gave me a hug. I hadn't seen her since Adam was diagnosed. Kathy has dealt with her own family health issues. Just when I thought, 'hey every thing is cool, I can handle this', I couldn't speak for crying. God damn. The COO happened to be around and not much later 'invited' me to go on home. I resisted a little and then took her up on it. 7pm was late enough.
I arrived home to realize it was another good day on Beechwood Avenue. I pulled in the drive way to see Adam and Fin walking down the side walk. Adam was wearing the superman shirt that Jared and Heather gave him. He says it's going to be his summer get-up; along with jeans and a matching superman baseball cap. Man of steel kicking cancer's ass!
This thing is teaching me to really appreciate a good day.
'Enjoy every sandwich.' -- Warren Zevon
Tomorrow, Adam goes for his first outpt chemo. We are hoping the effects will be significantly less than last week's inpt chemo visit. We now have to start looking out for cumulative effects; especially low white blood cell count as this will make Adam more susceptible to infection. He has been having jaw pain which we've been told is normal and is actually being caused by the least potent of the three chemo meds.
I arrived home to realize it was another good day on Beechwood Avenue. I pulled in the drive way to see Adam and Fin walking down the side walk. Adam was wearing the superman shirt that Jared and Heather gave him. He says it's going to be his summer get-up; along with jeans and a matching superman baseball cap. Man of steel kicking cancer's ass!
This thing is teaching me to really appreciate a good day.
'Enjoy every sandwich.' -- Warren Zevon
Tomorrow, Adam goes for his first outpt chemo. We are hoping the effects will be significantly less than last week's inpt chemo visit. We now have to start looking out for cumulative effects; especially low white blood cell count as this will make Adam more susceptible to infection. He has been having jaw pain which we've been told is normal and is actually being caused by the least potent of the three chemo meds.
Tuesday, April 8, 2008
more Gratitude
Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful.---Buddha
Thanks to Uncle Jared & Aunt Heather for the nerf hoop, superman gear and chess set and Uncle Jay & Aunt Lucy for the Alaska license plate, and Juju & Bear for more webkinz, and Mary and Tom for generous offers and Marie for last night's dinner.
Adam had a great day. Martha said, "He was like himself today, it was like having Adam back."
Thanks to Uncle Jared & Aunt Heather for the nerf hoop, superman gear and chess set and Uncle Jay & Aunt Lucy for the Alaska license plate, and Juju & Bear for more webkinz, and Mary and Tom for generous offers and Marie for last night's dinner.
Adam had a great day. Martha said, "He was like himself today, it was like having Adam back."
Monday, April 7, 2008
Cowboy Church
Yesterday was beautiful. A perfect April day after what seemed like 40 days worth of rain over just 4 days. Adam was still feeling down but by the afternoon he had enough energy to join us outside for a spontaneous street gathering.
There was talk of another street film party, which would be great now that we have so many kids on the street. Tanya's daughter Joanna let us borrow their Mr. Bean collection. Regine, our next door neighbor, insisted we take her house key so that we could use her washer and dryer; the laundromat having lost its charm when Martha was asked if she was the attendant the other day. Carolyn taking Camille for a couple of hours and when we picked her up she had made Chinese scallion pancakes for us. Very delicious. John making his usual goofy observations and extolling the virtues of an old fashioned push mower. He had me convinced as my mower had just broken down not an hour prior. Fin selling pencils, he said for his school, but he would skim a little off the top. Folks talking about summer plans. Adam, Fin and Tanya's boys talking about whatever they were talking about. It was almost a perfect afternoon.
This morning at work we had our Monday morning leadership meeting, recently blessedly moved from 430 in the afternoons, and were joined by the Skyline Medical Center pastor, Harry Yates. Harry is an interesting guy. He started the local Cowboy Church, nashvillecowboychurch.org, check it out, and he is married to Johnny Cash's sister. No kidding. He is also a great guy. He opened our meeting with a prayer and devotion. He told a story which I can't quite remember the details of but the lesson was clear. "A place with all sunshine all the time is a desert. " It may be too early to find meaning it what Adam is going through. But Harry's comment made me think about Adam's life, cancer, the future, all the rain we have had in Nashville and the beautiful Sunday afternoon yesterday. Harry ended with a joining of hands and a prayer for Adam and for me. I teared up a little. Sometimes letting people care for you is hard.
There was talk of another street film party, which would be great now that we have so many kids on the street. Tanya's daughter Joanna let us borrow their Mr. Bean collection. Regine, our next door neighbor, insisted we take her house key so that we could use her washer and dryer; the laundromat having lost its charm when Martha was asked if she was the attendant the other day. Carolyn taking Camille for a couple of hours and when we picked her up she had made Chinese scallion pancakes for us. Very delicious. John making his usual goofy observations and extolling the virtues of an old fashioned push mower. He had me convinced as my mower had just broken down not an hour prior. Fin selling pencils, he said for his school, but he would skim a little off the top. Folks talking about summer plans. Adam, Fin and Tanya's boys talking about whatever they were talking about. It was almost a perfect afternoon.
This morning at work we had our Monday morning leadership meeting, recently blessedly moved from 430 in the afternoons, and were joined by the Skyline Medical Center pastor, Harry Yates. Harry is an interesting guy. He started the local Cowboy Church, nashvillecowboychurch.org, check it out, and he is married to Johnny Cash's sister. No kidding. He is also a great guy. He opened our meeting with a prayer and devotion. He told a story which I can't quite remember the details of but the lesson was clear. "A place with all sunshine all the time is a desert. " It may be too early to find meaning it what Adam is going through. But Harry's comment made me think about Adam's life, cancer, the future, all the rain we have had in Nashville and the beautiful Sunday afternoon yesterday. Harry ended with a joining of hands and a prayer for Adam and for me. I teared up a little. Sometimes letting people care for you is hard.
Sunday, April 6, 2008
Sunday morning
Saturday was wet, cold and lazy. Adam slept late and woke up a little nauseous. He threw up a little. Eventually he felt good enough to eat an apple and by the early afternoon his friend JP called and then came on over. JP and Adam went outside to play tag with the Alley kids and another boy named Gray who is in a different 'clan' than the Alley kids from the other side of Oakland St. There is peace in the valley.
Adam and JP played for a while, then came in and hung out for a few more hours playing with bionicals and watching cartoons.
Martha and I got take-out Thai food. We all watched Mr. Bean on Holiday. Pretty damn funny.
Today is supposed to be warmer and sunny. Hopefully Adam will feel better.
Adam and JP played for a while, then came in and hung out for a few more hours playing with bionicals and watching cartoons.
Martha and I got take-out Thai food. We all watched Mr. Bean on Holiday. Pretty damn funny.
Today is supposed to be warmer and sunny. Hopefully Adam will feel better.
Saturday, April 5, 2008
Perspective
I was able to relieve Martha at about 12pm yesterday. Adam was doing better, but after a rough morning we were happy to stay put, watch cartoons, play on webkinz, do a crossword puzzle and just hang out.
Adam's appetite eventually kicked back in around 2pm. He requested pizza from the food court on the second floor.
We waited 3 more hours for Dr. Collier to make a brief visit. His observation: "If Adam can hold down pizza he can go home." An hour later we were leaving. They sent Adam home with prescriptions for an antibiotic which he will be on for the duration of his chemo and the anti nausea medication he had been given prior to chemo starting.
Volunteers had stopped by earlier and let Adam pick out a hat made by the volunteers meant to cover balding heads. Most of the selection was a little girlie, Adam picked out the hat with the hand painted panda.
I remember when Martha was waiting to be discharged after having Camille 4 years ago and how anxious and impatient I was to get her and us out of there. Really there was none of that with this prolonged day of waiting. Maybe the effort to show more patience is paying off. Maybe just being happy that Adam seemed comfortable and past the worst aspects of the nausea were good enough. This tri-weekly admission will seem routine, I guess, at some point so I might as well accept the pace at which the hospital moves.
After two and half weeks of build up and hearing 'all about it' this was the first 'real' experience for Adam as a cancer patient. This wasn't more imaging or blood work; this was Adam being admitted on the 6th floor of Vandy Childrens Hospital, the cancer ward. He was amazingly good. Yes, he has been handling the whole thing well with big servings of 10 (almost 11) year old sarcasm, 'I'm bored' chants and ear buds in ears ignoring, but with this admission, with the chemo and the vomit, Adam dropped just about all of that and dealt with it.
On the night Adam was getting his first round of chemo an adolescent boy down the hall was dying. I think he passed away in the early morning. The boy's whole family was there. They had been dealing with their beloved child's illness for a while. You could tell because there wasn't the anguish, weeping, rage or denial but from the distance that we saw the loving acceptance that the fight was done and it was time. We found out later he had leukemia.
Friday, April 4, 2008
gratitude
I awoke this morning with devout thanksgiving for my friends, the old and the new.
--EMERSON
Adam finally started chemo. First he was given some anti nausea medicine and then about 1 hour later, around 930pm, the chemo began. Adam responded pretty well. He did experience some nausea around 6am but was given some benedryl and went back to sleep. Hopefully this means he will tolerate the chemo pretty well. We will have to see about longer term effects like hair loss, muscle weakness, mouth sores and the rest of it when we get there. (Not 5 minutes after I wrote that Adam threw up.) He is resting quietly now.
I have gone too long without thanking some really good folks. Our neighbors, Carolyn and Felix, have been incredibly generous and kind. Their daughter Nora and ours, Camille, are very good friends and attend the same preschool. When we found out that Adam needed eye surgery and shortly after, that he had cancer, Carolyn immediately offered to keep Camille, pick her up from school and even let her spend the night (which she did last night). Thank you very much Carolyn and Felix (and Nora and little Adam).
We have had generous offers from many of our neighbors and friends. (Heathie even offered to do our laundry the other day. Martha joked, 'That is a line I am not willing to cross.' ) And before this thing is done I am sure we will be taking them up on their offers. During times like this, when we just can't do it alone, it becomes clear how much we depend on others. I can fool myself into thinking I am independent, I don't really need anybody else, but the reality is that I need others profoundly. Whether it is being spontaneously invited to dinner this week by John and Julia or my friend Kenny calling and inviting me to lunch or Nan continuously offering Adam and our family prayerful concern or my parents insisting that they are ready to come up and help anytime or my sister in law Jeannette sending sweet and silly emails, I need and appreciate the help, the readiness to help and the support. (Our friend Anton, who lives in the Philippines, offered prayers from the 3rd world--that way even we are asleep folks are praying for us on the other side of the planet.)
From the bottom of our hearts, Martha and I thank you!
--EMERSON
Adam finally started chemo. First he was given some anti nausea medicine and then about 1 hour later, around 930pm, the chemo began. Adam responded pretty well. He did experience some nausea around 6am but was given some benedryl and went back to sleep. Hopefully this means he will tolerate the chemo pretty well. We will have to see about longer term effects like hair loss, muscle weakness, mouth sores and the rest of it when we get there. (Not 5 minutes after I wrote that Adam threw up.) He is resting quietly now.
I have gone too long without thanking some really good folks. Our neighbors, Carolyn and Felix, have been incredibly generous and kind. Their daughter Nora and ours, Camille, are very good friends and attend the same preschool. When we found out that Adam needed eye surgery and shortly after, that he had cancer, Carolyn immediately offered to keep Camille, pick her up from school and even let her spend the night (which she did last night). Thank you very much Carolyn and Felix (and Nora and little Adam).
We have had generous offers from many of our neighbors and friends. (Heathie even offered to do our laundry the other day. Martha joked, 'That is a line I am not willing to cross.' ) And before this thing is done I am sure we will be taking them up on their offers. During times like this, when we just can't do it alone, it becomes clear how much we depend on others. I can fool myself into thinking I am independent, I don't really need anybody else, but the reality is that I need others profoundly. Whether it is being spontaneously invited to dinner this week by John and Julia or my friend Kenny calling and inviting me to lunch or Nan continuously offering Adam and our family prayerful concern or my parents insisting that they are ready to come up and help anytime or my sister in law Jeannette sending sweet and silly emails, I need and appreciate the help, the readiness to help and the support. (Our friend Anton, who lives in the Philippines, offered prayers from the 3rd world--that way even we are asleep folks are praying for us on the other side of the planet.)
From the bottom of our hearts, Martha and I thank you!
Thursday, April 3, 2008
Patient patient
The day started out pretty well. Adam had a 10am appointment with the radiation oncologist, Dr. Tenenholz, at the Vanderbilt Cancer Center to learn more about what we can expect when Adam begins radiation therapy. Adam was listening to his video player with his ipod ear buds. This has become his habit, or is it coping, whenever we are in these meetings. Dr. Tenenholz examined Adam and asked him the same set of questions that Adam has heard and I guess will hear over and over. Martha and I had to get on to Adam to pull the ear buds out, look up from the portable video screen and answer the doctor's questions.
Dr. T was actually great! Hearing a couple of days ago that Adam would require radiation sent us down, Martha especially. Dr. T was charming and optimistic. Qualities that can be lacking in many of the folks we have been dealing with--good and well intentioned as they are. Dr. T explained that though we can expect side effects these are likely to be relatively mild. The radiation treatments will not hurt and will only take a few minutes per treatment. Adam will probably lose his eye lashes and some of his brow but these will grow back. He may have some 'dry eye' as explained before, but Dr. T says this will be mildly irritating and will probably, though not definitely, be temporary. Dr. T did say that radiation therapy does increase the risk for some forms of cancer down the road but he reiterated that Adam would be getting a low dose. Technically the dose is called '36 Gray'. Apparently this is a fairly safe dose with little threat to his eye or brain. It's not that his information was so different from what we heard from Dr. Kuttesch and Dr. Mawn, but the way it was delivered and his emphasis on Adam as a very low risk for future complications resulting from radiation made a big difference. Style matters. Martha and I left his office feeling good. He even gave us a tour of the facility and showed Adam the 'mask' his staff would make that would keep Adam's head still during the treatments. It was pretty cool and Adam will be able to keep it when he is done. Future wall art!
Then we went to the Childrens Cancer Center where Adam would be processed to be admitted to get his first chemo infusion. We were a little early so we were hoping that Adam could get started a little sooner than expected. It is 8pm right now as I write and Adam's first chemo treatment has yet to begin. He finally got admitted to a room around 530pm. They did start the IV through his port-o-cath to push fluids which is apparently very necessary for chemo. He has been great all day. Patient, hanging out with mom, playing webkinz or watching The Simpsons and seemingly ok with all the waiting.
Patience, patience.
The nurses have been good, the room is relatively comfortable, but it would be great to get this thing going!
Dr. T was actually great! Hearing a couple of days ago that Adam would require radiation sent us down, Martha especially. Dr. T was charming and optimistic. Qualities that can be lacking in many of the folks we have been dealing with--good and well intentioned as they are. Dr. T explained that though we can expect side effects these are likely to be relatively mild. The radiation treatments will not hurt and will only take a few minutes per treatment. Adam will probably lose his eye lashes and some of his brow but these will grow back. He may have some 'dry eye' as explained before, but Dr. T says this will be mildly irritating and will probably, though not definitely, be temporary. Dr. T did say that radiation therapy does increase the risk for some forms of cancer down the road but he reiterated that Adam would be getting a low dose. Technically the dose is called '36 Gray'. Apparently this is a fairly safe dose with little threat to his eye or brain. It's not that his information was so different from what we heard from Dr. Kuttesch and Dr. Mawn, but the way it was delivered and his emphasis on Adam as a very low risk for future complications resulting from radiation made a big difference. Style matters. Martha and I left his office feeling good. He even gave us a tour of the facility and showed Adam the 'mask' his staff would make that would keep Adam's head still during the treatments. It was pretty cool and Adam will be able to keep it when he is done. Future wall art!
Then we went to the Childrens Cancer Center where Adam would be processed to be admitted to get his first chemo infusion. We were a little early so we were hoping that Adam could get started a little sooner than expected. It is 8pm right now as I write and Adam's first chemo treatment has yet to begin. He finally got admitted to a room around 530pm. They did start the IV through his port-o-cath to push fluids which is apparently very necessary for chemo. He has been great all day. Patient, hanging out with mom, playing webkinz or watching The Simpsons and seemingly ok with all the waiting.
Patience, patience.
The nurses have been good, the room is relatively comfortable, but it would be great to get this thing going!
Radiation Therapy Information
As much as we are 'freaked out' that Adam will have to get radiation therapy, according to the literature the outcomes are better. Adam fits into 'Group II' of this article.
Radiation Therapy Management Options
Radiation therapy is an effective method for achieving local control of tumor for patients with microscopic or gross residual disease following biopsy, initial surgical resection, or chemotherapy. Patients with completely resected tumors (Group I) of embryonal histology do well without radiation therapy,[44,45] but radiation therapy benefits patients with Group I tumors with alveolar or undifferentiated histology.[69] A review of European trials conducted by the Cooperative Soft Tissue Sarcoma Study Group between 1981 and 1998 in which radiation therapy was omitted for some Group II patients demonstrated a benefit to using radiation therapy as a component of local tumor control for all Group II patient subsets (defined by tumor histology, tumor size, and tumor site).[70] Local failure is the predominant type of relapse for patients with Group III disease. Patients with tumor-involved regional lymph nodes at diagnosis have a higher risk of local and distant failure compared with patients whose lymph nodes are negative.[71] As with the surgical management of patients with rhabdomyosarcoma, recommendations for radiation therapy are dependent on the site of primary tumor and on the amount of residual disease, if any, following surgical resection. For patients with head and neck rhabdomyosarcoma, one study reported excellent local control in 28 patients treated with intensity-modulated radiotherapy (IMRT) and chemotherapy over a 4-year period. Further study is needed, but the use of IMRT and chemotherapy in patients with head and neck rhabdomyosarcoma may result in less severe late effects.[72]
For optimal care of pediatric patients undergoing radiation treatments, it is imperative to have a radiation oncologist, radiation technicians, and nurses who are experienced in treating children. An anesthesiologist may be necessary to help sedate and immobilize young patients. The facility should be equipped with a linear accelerator and have the capabilities to administer electron beam therapy. Computerized treatment planning with a three-dimensional planning system should be available. Techniques to deliver radiation specifically to the tumor while sparing normal tissue (e.g., conformal radiation, intensity-modulated radiation therapy, or proton-beam therapy) should be considered.[73,74]
Standard treatment options
The radiation therapy dose depends predominantly on the amount of residual disease, if any, following the primary surgical resection. In general, patients with microscopic residual disease (Group II) receive radiation therapy to approximately 41 Gy,[69,75] though doses from 30 to 40 Gy may be adequate in patients receiving effective multiagent chemotherapy.[76] IRS-II patients with gross residual disease (Group III) who received 40 Gy to more than 50 Gy had locoregional relapse rates greater than 30%; higher doses of radiation (>60 Gy) have been associated with unacceptable long-term toxic effects.[77,78] Group III patients on the IRS-IV standard treatment arm received 50.4 Gy.[79]
The treated volume should be determined by the extent of tumor at diagnosis prior to surgical resection and prior to chemotherapy. A margin of 2 cm is generally used, including clinically involved regional lymph nodes.[69] While the volume irradiated may be modified based on guidelines for normal tissue tolerance, gross residual disease at the time of radiation should receive full-dose treatment.
The timing of radiation therapy generally allows for chemotherapy to be given for 1 to 3 months prior to the initiation of radiation therapy. In current COG protocols, patients with parameningeal disease who have evidence of meningeal extension start radiation therapy at the beginning of treatment.[45,80,81] A prospective trial of 26 patients with Group III parameningeal rhabdomyosarcoma achieved good local control and survival with radiation therapy administered at the conventional time.[82] Radiation therapy is usually given for 5 to 6 weeks (e.g., 1.8 Gy per day for 28 treatment days), during which time chemotherapy is usually modified to avoid the radiosensitizing agents dactinomycin and doxorubicin.
Radiation Therapy Management Options
Radiation therapy is an effective method for achieving local control of tumor for patients with microscopic or gross residual disease following biopsy, initial surgical resection, or chemotherapy. Patients with completely resected tumors (Group I) of embryonal histology do well without radiation therapy,[44,45] but radiation therapy benefits patients with Group I tumors with alveolar or undifferentiated histology.[69] A review of European trials conducted by the Cooperative Soft Tissue Sarcoma Study Group between 1981 and 1998 in which radiation therapy was omitted for some Group II patients demonstrated a benefit to using radiation therapy as a component of local tumor control for all Group II patient subsets (defined by tumor histology, tumor size, and tumor site).[70] Local failure is the predominant type of relapse for patients with Group III disease. Patients with tumor-involved regional lymph nodes at diagnosis have a higher risk of local and distant failure compared with patients whose lymph nodes are negative.[71] As with the surgical management of patients with rhabdomyosarcoma, recommendations for radiation therapy are dependent on the site of primary tumor and on the amount of residual disease, if any, following surgical resection. For patients with head and neck rhabdomyosarcoma, one study reported excellent local control in 28 patients treated with intensity-modulated radiotherapy (IMRT) and chemotherapy over a 4-year period. Further study is needed, but the use of IMRT and chemotherapy in patients with head and neck rhabdomyosarcoma may result in less severe late effects.[72]
For optimal care of pediatric patients undergoing radiation treatments, it is imperative to have a radiation oncologist, radiation technicians, and nurses who are experienced in treating children. An anesthesiologist may be necessary to help sedate and immobilize young patients. The facility should be equipped with a linear accelerator and have the capabilities to administer electron beam therapy. Computerized treatment planning with a three-dimensional planning system should be available. Techniques to deliver radiation specifically to the tumor while sparing normal tissue (e.g., conformal radiation, intensity-modulated radiation therapy, or proton-beam therapy) should be considered.[73,74]
Standard treatment options
The radiation therapy dose depends predominantly on the amount of residual disease, if any, following the primary surgical resection. In general, patients with microscopic residual disease (Group II) receive radiation therapy to approximately 41 Gy,[69,75] though doses from 30 to 40 Gy may be adequate in patients receiving effective multiagent chemotherapy.[76] IRS-II patients with gross residual disease (Group III) who received 40 Gy to more than 50 Gy had locoregional relapse rates greater than 30%; higher doses of radiation (>60 Gy) have been associated with unacceptable long-term toxic effects.[77,78] Group III patients on the IRS-IV standard treatment arm received 50.4 Gy.[79]
The treated volume should be determined by the extent of tumor at diagnosis prior to surgical resection and prior to chemotherapy. A margin of 2 cm is generally used, including clinically involved regional lymph nodes.[69] While the volume irradiated may be modified based on guidelines for normal tissue tolerance, gross residual disease at the time of radiation should receive full-dose treatment.
The timing of radiation therapy generally allows for chemotherapy to be given for 1 to 3 months prior to the initiation of radiation therapy. In current COG protocols, patients with parameningeal disease who have evidence of meningeal extension start radiation therapy at the beginning of treatment.[45,80,81] A prospective trial of 26 patients with Group III parameningeal rhabdomyosarcoma achieved good local control and survival with radiation therapy administered at the conventional time.[82] Radiation therapy is usually given for 5 to 6 weeks (e.g., 1.8 Gy per day for 28 treatment days), during which time chemotherapy is usually modified to avoid the radiosensitizing agents dactinomycin and doxorubicin.
Wednesday, April 2, 2008
'c' day
Adam had his spinal tap today. This was the first 'procedure' that Martha and I were not both with Adam. I stayed at work and Martha went with Adam. Martha tells me it went well as far as the procedure itself is concerned. On time and with little pain for Adam. He has been prescribed this anesthetizing cream that is supposed to be applied about an hour before his skin is to be stuck. Apparently it really works. Again, small blessings. The results of the spinal tap will be known before his chemo starts tomorrow.
We found out just yesterday that chemo and chicken pox are a really bad combination. We emailed Adam's teachers asking about any outbreaks. Ms. Dooley promptly replied that yes there have been significant outbreaks. Adam's home room teacher, Ms. Garman, says that the student sitting next to Adam in some class had chicken pox. Adam will have to get a titer prior to getting chemo. Martha told me she came close to losing her temper today at the Cancer Center because it seems like we could have been told about this chicken pox concern prior to two days before chemo is to begin, $1800 of the wrong medicine was sent to our house because of poor communication between the Center and the aetna pharmacy which was then billed to our insurance and nobody seems to know the exact dosage of radiaton Adam will be getting. It's enough to make you holler...
The pressure is building. I came close to losing my own temper with Martha when she called me at work urging me to get someone in HR to go to bat for us with aetna. I work for HCA and only HCA hospitals are considered 'in network'. We are facing many procedures so it would do us a lot of good to convince aetna to understand that there are no HCA hospitals in the area that provide pediatric oncology and therefore we should be able to get 'in network' co pay rates. Whatever. It's only money. The point being that it will take more effort, at least for me, to remain calm and practice loving kindness toward Martha and the kids. I will make the effort and when I fail I will try again. (And of course Martha was right, it will help if I can get the HR director to be an advocate.)
Our neighbors, John and Julia, are really great. They took Adam and Camille in while I had to stay at work late and Martha went to go work out (which is not a luxury). When I finally got home and went to pick Adam and Camille up I was invited to stay for dinner. It was delicious, I probably wasn't the best conversationalist, and John, Julia and their kids were incredibly hospitable. I take nothing for granted.
Tomorrow is 'c' day. Chemo begins. The anxiety and stress mount. I am hoping that Adam will somehow be 'above average' in his ability to tolerate what he has to go through.
Please pray for us, please think of us, please breathe for us.
peace
We found out just yesterday that chemo and chicken pox are a really bad combination. We emailed Adam's teachers asking about any outbreaks. Ms. Dooley promptly replied that yes there have been significant outbreaks. Adam's home room teacher, Ms. Garman, says that the student sitting next to Adam in some class had chicken pox. Adam will have to get a titer prior to getting chemo. Martha told me she came close to losing her temper today at the Cancer Center because it seems like we could have been told about this chicken pox concern prior to two days before chemo is to begin, $1800 of the wrong medicine was sent to our house because of poor communication between the Center and the aetna pharmacy which was then billed to our insurance and nobody seems to know the exact dosage of radiaton Adam will be getting. It's enough to make you holler...
The pressure is building. I came close to losing my own temper with Martha when she called me at work urging me to get someone in HR to go to bat for us with aetna. I work for HCA and only HCA hospitals are considered 'in network'. We are facing many procedures so it would do us a lot of good to convince aetna to understand that there are no HCA hospitals in the area that provide pediatric oncology and therefore we should be able to get 'in network' co pay rates. Whatever. It's only money. The point being that it will take more effort, at least for me, to remain calm and practice loving kindness toward Martha and the kids. I will make the effort and when I fail I will try again. (And of course Martha was right, it will help if I can get the HR director to be an advocate.)
Our neighbors, John and Julia, are really great. They took Adam and Camille in while I had to stay at work late and Martha went to go work out (which is not a luxury). When I finally got home and went to pick Adam and Camille up I was invited to stay for dinner. It was delicious, I probably wasn't the best conversationalist, and John, Julia and their kids were incredibly hospitable. I take nothing for granted.
Tomorrow is 'c' day. Chemo begins. The anxiety and stress mount. I am hoping that Adam will somehow be 'above average' in his ability to tolerate what he has to go through.
Please pray for us, please think of us, please breathe for us.
peace
Tuesday, April 1, 2008
webkinz
Several friends and cousins have asked about Adam's webinz status.
His user name is KennelKing.
His user name is KennelKing.
Donate or Shave
http://www.stbaldricks.org/about_us/index.html
Adam's first cousin, Patrick Brown, is going to shave his head for the cause. Click on the web site above, and then click on the Find a Participant tab. Enter Patrick Brown and support his efforts.
Way to go Pat!
Adam's first cousin, Patrick Brown, is going to shave his head for the cause. Click on the web site above, and then click on the Find a Participant tab. Enter Patrick Brown and support his efforts.
Way to go Pat!
Long Distance Run Around
I picked Adam up from school at 120pm. I actually had to wait while the school secretary figured out where he was. He and his class were in health, which is apparently what they call recess now. He was outside playing games with his school mates. I hated to have to pick him up only to take him to the oncologist.
Our appointment was for 2pm. We were seen around 245. Dr. Kuttesch told us that the bone marrow test was negative. Very good news. But he also told us that Adam would have to get a 'spinal tap' tomorrow because he 'forgot' to order it last Friday when Adam was admitted to get a bone marrow biopsy and have his port-o-cath implanted. Oh well, every body's human, even world renown pediatric oncologists. All that was ok. What's disheartening is that Adam will have to get radiation therapy. Martha and I had figured, based on what we thought we were hearing, that Adam would be spared this particular treatment. But no, Dr. Kuttesch says that there could be microscopic pieces of the tumor left over from the surgery and this would require about 20 treatments of radiation over a one month period.
Before this gets too confusing, here is the schedule.
Adam starts chemo this Thursday. He will be admitted at 1pm for about 24 hours. Adam will receive chemo infusions every three weeks on Thursdays. The first 12 weeks will include three medications. They are all pretty nasty but one in particular has some serious long term side effects that this 'low risk' protocol is supposed to reduce. After the first 12 weeks his chemo meds will be reduced to the two less dangerous meds but radiation therapy will be added for one month. Radiation treatments will occur Monday through Friday for 4 weeks. Twenty treatments in all.
This so called 'low risk' protocol will last about 6 months. The alternative is 9 months and I have to keep telling myself how much worse that would be.
Because Adam will be getting radiation we now have additional side effects to worry about. These include 'dry eye' while Adam is getting radiation and possibly for a while afterward or even permanently. 'Dry eye' is what it sounds like. The radiation treatment interferes with the eye's ability to produce tears. It is a painful and irritating condition. Dr. Mawn, whom we also saw today (remember she was the eye surgeon who removed the tumor), says that there are effective medications to help with the side effects. More medications. Because of the radiation he will always have to be wary of the sun and wear extra protection. He will have a higher risk of skin cancer for the rest of his life.
Just last night I was letting myself imagine the end of this thing and the party we are going to throw when this cancer is smashed, destroyed, eliminated, cured. Denial creeps in silently and without opposition. These appointments today brought me once again to reality. I put some of what I have been reading to use. Dr. Kuttesch's 'confession' that he forgot to order the spinal tap, Dr. Mawn's front desk staff's obliviousness to customer service basics and finally Dr. Mawn's honest, but distressing, opinions about radiation and its effects on the eye could have all sent me off. Instead I just focused on my 'in breath' and my 'out breath.'
This thing is a long distance run, not a sprint. There will be hills, ups and downs, straight aways. Martha and I have to stay steady. For Adam and for Camille and for ourselves.
Peace.
Our appointment was for 2pm. We were seen around 245. Dr. Kuttesch told us that the bone marrow test was negative. Very good news. But he also told us that Adam would have to get a 'spinal tap' tomorrow because he 'forgot' to order it last Friday when Adam was admitted to get a bone marrow biopsy and have his port-o-cath implanted. Oh well, every body's human, even world renown pediatric oncologists. All that was ok. What's disheartening is that Adam will have to get radiation therapy. Martha and I had figured, based on what we thought we were hearing, that Adam would be spared this particular treatment. But no, Dr. Kuttesch says that there could be microscopic pieces of the tumor left over from the surgery and this would require about 20 treatments of radiation over a one month period.
Before this gets too confusing, here is the schedule.
Adam starts chemo this Thursday. He will be admitted at 1pm for about 24 hours. Adam will receive chemo infusions every three weeks on Thursdays. The first 12 weeks will include three medications. They are all pretty nasty but one in particular has some serious long term side effects that this 'low risk' protocol is supposed to reduce. After the first 12 weeks his chemo meds will be reduced to the two less dangerous meds but radiation therapy will be added for one month. Radiation treatments will occur Monday through Friday for 4 weeks. Twenty treatments in all.
This so called 'low risk' protocol will last about 6 months. The alternative is 9 months and I have to keep telling myself how much worse that would be.
Because Adam will be getting radiation we now have additional side effects to worry about. These include 'dry eye' while Adam is getting radiation and possibly for a while afterward or even permanently. 'Dry eye' is what it sounds like. The radiation treatment interferes with the eye's ability to produce tears. It is a painful and irritating condition. Dr. Mawn, whom we also saw today (remember she was the eye surgeon who removed the tumor), says that there are effective medications to help with the side effects. More medications. Because of the radiation he will always have to be wary of the sun and wear extra protection. He will have a higher risk of skin cancer for the rest of his life.
Just last night I was letting myself imagine the end of this thing and the party we are going to throw when this cancer is smashed, destroyed, eliminated, cured. Denial creeps in silently and without opposition. These appointments today brought me once again to reality. I put some of what I have been reading to use. Dr. Kuttesch's 'confession' that he forgot to order the spinal tap, Dr. Mawn's front desk staff's obliviousness to customer service basics and finally Dr. Mawn's honest, but distressing, opinions about radiation and its effects on the eye could have all sent me off. Instead I just focused on my 'in breath' and my 'out breath.'
This thing is a long distance run, not a sprint. There will be hills, ups and downs, straight aways. Martha and I have to stay steady. For Adam and for Camille and for ourselves.
Peace.
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