Juju suggested that Adam think of hobbies he can practice even while laid up from time to time.
Adam has a small collection of state license plates already. We thought it would be a great idea to have folks send in their old plates. We could plaster Adam's room with them. It would a wonderful visual representation of all the love and support Adam is getting.
Adam went to school today and will go back tomorrow. Wednesday his home bound tutor comes for her first visit and Thursday chemo starts.
Adam grumbled about school but this afternoon he seemed very happy that he went.
One of his carpool mates, Hadley, sent him a hilarious card, filled with knock knock jokes and art work.
Have a great week.
"When you wish someone joy, you wish them peace,love, prosperity, happiness... all the good things.”
Maya Angelou
Monday, March 31, 2008
Sunday, March 30, 2008
The Alley Kids
Adam has recovered from his surgeries on Friday quicker than we anticipated. He had to take one dose of pain killer yesterday morning but has not had anything since. We've asked, but he says he is not feeling any real pain.
So today he was ready for action. First Fin, the little boy who lives down the street and loves Adam came to visit and play, and then later Antonio, Adam's best friend, came over. It didn't take long before they were outside engaging in battle with the 'Alley' kids. Over the past several months Adam, Antonio and another friend JP, have been at war with the kids who live off the back alley. Mostly girls by the way. After many weeks of being beat, Adam et al, who call themselves the Alley Clan, decided to try and join forces. Adam also invited Joanna, a cute 11 year old girl who lives down the street, to join them. She immediately joined the other side---true to her gender. They were in the middle of negotiations when I had to retrieve them because Antonio's dad had arrived to pick him up.
The three boys were walking ahead of me on the way home. Antonio was complaining about having to go back to school after spring break tomorrow. Adam said he has to go to school too even though he is starting treatment this week. Antonio asked about Adam's treatment and Adam responded that he was starting 'chemo.' 'What's chemo?' Antonio asked. Adam went on to matter of factly explain that chemo was when he would have to start getting medicine that would make him feel sick to his stomach and he wouldn't be able to go to school much. Fin was looking up slightly bewildered by what was being explained. Antonio shook his head with understanding. I just watched and listened with no comment, thinking how amazing it was to have Adam so calmly explain, much better than I am describing here, how his life is changing.
Juju and Bear arrived a short while later with Camille. We are so happy to have Camille back. Adam has even missed her! She has not stopped talking since she got here and has naturally injected her own positive energy back into our family. Welcome home Camille.
So today he was ready for action. First Fin, the little boy who lives down the street and loves Adam came to visit and play, and then later Antonio, Adam's best friend, came over. It didn't take long before they were outside engaging in battle with the 'Alley' kids. Over the past several months Adam, Antonio and another friend JP, have been at war with the kids who live off the back alley. Mostly girls by the way. After many weeks of being beat, Adam et al, who call themselves the Alley Clan, decided to try and join forces. Adam also invited Joanna, a cute 11 year old girl who lives down the street, to join them. She immediately joined the other side---true to her gender. They were in the middle of negotiations when I had to retrieve them because Antonio's dad had arrived to pick him up.
The three boys were walking ahead of me on the way home. Antonio was complaining about having to go back to school after spring break tomorrow. Adam said he has to go to school too even though he is starting treatment this week. Antonio asked about Adam's treatment and Adam responded that he was starting 'chemo.' 'What's chemo?' Antonio asked. Adam went on to matter of factly explain that chemo was when he would have to start getting medicine that would make him feel sick to his stomach and he wouldn't be able to go to school much. Fin was looking up slightly bewildered by what was being explained. Antonio shook his head with understanding. I just watched and listened with no comment, thinking how amazing it was to have Adam so calmly explain, much better than I am describing here, how his life is changing.
Juju and Bear arrived a short while later with Camille. We are so happy to have Camille back. Adam has even missed her! She has not stopped talking since she got here and has naturally injected her own positive energy back into our family. Welcome home Camille.
Saturday, March 29, 2008
Saturday
Today is quiet. Adam is recovering from his surgeries of yesterday and playing on the Webkinz site. We just had our direct tv fixed and the repair man just left. I am drinking a beer and listening to the YES anthology. Martha is at the laundromat (what I have not mentioned is that right before we found out about Adam we embarked on a redo of our utility room and front porch, so we have no washer and drier).
Our neighbor Vivian came over and requested a picture of Adam. She is taking it to her yoga/chanting group tonight. She says about 40 folks will be chanting a Hindu prayer of positive healing energy and they would like a picture to focus on. I picked a picture of Adam taken last winter after he had been out in the snow--ruddy cheeked, hair a little tossled, looking very healthy.
Have a great Saturday.
Our neighbor Vivian came over and requested a picture of Adam. She is taking it to her yoga/chanting group tonight. She says about 40 folks will be chanting a Hindu prayer of positive healing energy and they would like a picture to focus on. I picked a picture of Adam taken last winter after he had been out in the snow--ruddy cheeked, hair a little tossled, looking very healthy.
Have a great Saturday.
what cancer cannot do
CANCER IS SO LIMITED....
IT CANNOT CRIPPLE LOVE,
IT CANNOT SHATTER HOPE,
IT CANNOT CORRODE FAITH,
IT CANNOT DESTROY PEACE,
IT CANNOT KILL FRIENDSHIP,
IT CANNOT SUPPRESS MEMORIES,
IT CANNOT INVADE THE SOUL,
IT CANNOT STEAL ETERNAL LIFE,
IN CANNOT CONQUER THE SPIRIT.
--anonymous
(quoted in Psalms and Compassions by Timothy Brown, SJ--thanks Kevin)
IT CANNOT CRIPPLE LOVE,
IT CANNOT SHATTER HOPE,
IT CANNOT CORRODE FAITH,
IT CANNOT DESTROY PEACE,
IT CANNOT KILL FRIENDSHIP,
IT CANNOT SUPPRESS MEMORIES,
IT CANNOT INVADE THE SOUL,
IT CANNOT STEAL ETERNAL LIFE,
IN CANNOT CONQUER THE SPIRIT.
--anonymous
(quoted in Psalms and Compassions by Timothy Brown, SJ--thanks Kevin)
Friday, March 28, 2008
port-o-cath
We are only two weeks into this thing and already it seems like Vandy Childrens Hospital is our home away from home. At first hospitals always seem like daunting places--you'll never know your way around. It doesn't take long to get pretty familiar.
We checked in at 9am to the 3rd floor. This is the surgical floor. We filled out paper work, paid the co pay, and hung out. Outwardly we probably appeared at ease but inwardly it still really sucks. I think in my own mind the denial process is still in place. I have to will my brain to remember that this procedure today is only the beginning. Adam had bone marrow sampled to rule out metastasis and for research which we consented to on our first visit to Dr. Kuttesch's and he had a 'port-a-cath' implanted into his chest. This will provide a less painful and more stable vein to inject chemo medications over the next 6 months. We think '6 months' because during Adam's operations today Dr. K sat down with us and explained that it looks as if the tumor Adam had was successfully removed and from the imaging tests so far there is no metastasis. The bone marrow scan could still show spread but Dr. K seems optimistic, as much as he is willing to show optimism, that Adam will qualify for a 'low risk' study group and will be able to participate in a treatment protocol that uses less intensive chemo. What this means is that for the first 3 months he will get the standard cocktail of three medications, and for the second 3 months he will get only two of those medications. This regimen is also shorter than the standard protocol which I believe is 9 months. Dr. K explained that this will reduce his exposure to the harsh side effects, short term and long term.
Make no mistake, Adam will still go through what most of us know about chemo: nausea, hairloss, weakness, etc. But the alternative is worse. Small blessings count!
Today, as usual, Adam handled things with grace and charm---and a little detachment. The one thing he was excited about was that the nurse, Meredith who was with Adam yesterday, made a special trip to see Adam and brought him the FLARP Noise Putty that he lost yesterday which had been given to Adam by the CT tech who thought he was a clown. Adam couldn't stop laughing yesterday when he was making fart sounds and was thrilled that Meredith went to the trouble. Hail Meredith.....
The surgery went fine. Adam had a little nausea from the morphine and was sleepy of course but no other problems. We just got back home a little while ago. Adam and I are sitting watching Rattatouie.
We have an appt with Dr. K on Tuesday. I think at that point we will seal the deal with regards to the 'low risk' regimen. Adam's chemotherapy starts next Thursday. Dr. K says he will be getting treatments about every 3 weeks but will be seen in the office weekly. The first chemo treatment will be a hospital admission. Depending on how Adam handles that he may have outpt sessions going forward. I am not really sure.
We checked in at 9am to the 3rd floor. This is the surgical floor. We filled out paper work, paid the co pay, and hung out. Outwardly we probably appeared at ease but inwardly it still really sucks. I think in my own mind the denial process is still in place. I have to will my brain to remember that this procedure today is only the beginning. Adam had bone marrow sampled to rule out metastasis and for research which we consented to on our first visit to Dr. Kuttesch's and he had a 'port-a-cath' implanted into his chest. This will provide a less painful and more stable vein to inject chemo medications over the next 6 months. We think '6 months' because during Adam's operations today Dr. K sat down with us and explained that it looks as if the tumor Adam had was successfully removed and from the imaging tests so far there is no metastasis. The bone marrow scan could still show spread but Dr. K seems optimistic, as much as he is willing to show optimism, that Adam will qualify for a 'low risk' study group and will be able to participate in a treatment protocol that uses less intensive chemo. What this means is that for the first 3 months he will get the standard cocktail of three medications, and for the second 3 months he will get only two of those medications. This regimen is also shorter than the standard protocol which I believe is 9 months. Dr. K explained that this will reduce his exposure to the harsh side effects, short term and long term.
Make no mistake, Adam will still go through what most of us know about chemo: nausea, hairloss, weakness, etc. But the alternative is worse. Small blessings count!
Today, as usual, Adam handled things with grace and charm---and a little detachment. The one thing he was excited about was that the nurse, Meredith who was with Adam yesterday, made a special trip to see Adam and brought him the FLARP Noise Putty that he lost yesterday which had been given to Adam by the CT tech who thought he was a clown. Adam couldn't stop laughing yesterday when he was making fart sounds and was thrilled that Meredith went to the trouble. Hail Meredith.....
The surgery went fine. Adam had a little nausea from the morphine and was sleepy of course but no other problems. We just got back home a little while ago. Adam and I are sitting watching Rattatouie.
We have an appt with Dr. K on Tuesday. I think at that point we will seal the deal with regards to the 'low risk' regimen. Adam's chemotherapy starts next Thursday. Dr. K says he will be getting treatments about every 3 weeks but will be seen in the office weekly. The first chemo treatment will be a hospital admission. Depending on how Adam handles that he may have outpt sessions going forward. I am not really sure.
Thursday, March 27, 2008
Mostly waiting
No big news today, just a lot of waiting for various imaging tests. Adam got a whole body bone scan, a CT scan and another MRI. This time he was sedated for the MRI. The nurse asked that Martha and I come in to the MRI room while she and the doctor gave Adam the sedative (a thick white liquid--not exactly what we expected). It only took a few seconds for Adam to go limp which was a little disconcerting all by itself. But at least it made it easy for Adam and he didn't squirm during the hour long imaging session. Martha and I went to go wait and after an hour he woke up, a little drunk, and was discharged in a wheelchair (a first for Adam).
Adam had not eaten since 630am so after we were all done, about 6pm, we made a bee line to Perfect Pizza.
That's it.
We read your responses and continue to take heart in your love and support. Thank you.
Adam had not eaten since 630am so after we were all done, about 6pm, we made a bee line to Perfect Pizza.
That's it.
We read your responses and continue to take heart in your love and support. Thank you.
Wednesday, March 26, 2008
there it goes
What a difference two weeks make. It seems like a long time.
Adam came home from school with a plastic microscope from science class, the class he does best in, excited to tell me about the properties of Epsom salt, grits and sugar. No kidding. His science teacher, Ms. Dooley, said Adam was talking about his cancer and chemotherapy with other boys in class and seemed at ease. He was most disappointed that just as he is ending his at-school time for the year the microscopes were being brought out. Wouldn't you know it!
Adam had said yesterday that he wanted to get his hair cut super short, so while the iron was hot I had the deed done.
I went to the book store yesterday to load up on comics and thank you cards. The comic books are for Adam (He loves the Simpsons at the moment) and the thank you notes are for me to write to the many many great folks who have been sending us their good energy, thoughts and prayers. I credit that for Adam's graceful attitude toward his circumstances.
Dr. Kuttesch wants to take a look at the bone marrow before Adam begins chemo so he will not be in the hospital all weekend as we had thought. We hope this is good news.
Tuesday, March 25, 2008
buzz cuts
Adam was at the same meeting that Martha and I were when we got the news about his diagnosis. He heard, but clearly it didn't register. A few days ago I spoke with Adam about why folks were sending him gifts, words of encouragement and putting him on prayer lists. He began to understand and cried a little but didn't ask any questions.
Today he called me from the bus on his way home from school. He asked when he was going back to the hospital and when he would be getting surgery again. I told him and he said "ok, thanks dad" and hung up.
When he and Martha were hanging out after school he began to ask more questions; what is going to happen, will it hurt, what is a central line, what will the side effects be? Adam is dealing with this in his own way. I can only guess how I would have handled this at this age and I can honestly say it wouldn't have been pretty. Martha and I have often remarked over the years how Adam's personality is so different than ours. Adam is a Cub scout and has to sell pop corn every year. He goes door to door talking folks out of their money for what is basically only slightly above average microwave popcorn. He does that willingly and even seems to enjoy it. It's a small thing but to me it indicates Adam's courage. I can barely even watch him selling out of my own fear of rejection and embarrassment. Adam has none of that. He just gets on with it.
Well he is just getting on with it now. Adam wants to get his hair cut short so that when he begins to lose it, it won't be as dramatic. My hair is already short but I will get it even shorter with him tomorrow. Buzz cuts for both of us.
He goes to school tomorrow for the last time this year. I had to get on to him only a little to finish a science project that is due. He is home bound for the rest of the school season.
Today he called me from the bus on his way home from school. He asked when he was going back to the hospital and when he would be getting surgery again. I told him and he said "ok, thanks dad" and hung up.
When he and Martha were hanging out after school he began to ask more questions; what is going to happen, will it hurt, what is a central line, what will the side effects be? Adam is dealing with this in his own way. I can only guess how I would have handled this at this age and I can honestly say it wouldn't have been pretty. Martha and I have often remarked over the years how Adam's personality is so different than ours. Adam is a Cub scout and has to sell pop corn every year. He goes door to door talking folks out of their money for what is basically only slightly above average microwave popcorn. He does that willingly and even seems to enjoy it. It's a small thing but to me it indicates Adam's courage. I can barely even watch him selling out of my own fear of rejection and embarrassment. Adam has none of that. He just gets on with it.
Well he is just getting on with it now. Adam wants to get his hair cut short so that when he begins to lose it, it won't be as dramatic. My hair is already short but I will get it even shorter with him tomorrow. Buzz cuts for both of us.
He goes to school tomorrow for the last time this year. I had to get on to him only a little to finish a science project that is due. He is home bound for the rest of the school season.
Monday, March 24, 2008
visiting the Woodstock family
I can't put in words how wonderful it has been for Adam to receive so much loving support from family. On our way back from Atlanta we made a quick stop in Woodstock, Georgia to say hello to Laura and Mark. Apparently their place has become the central hub of the Paul and Jean side of the family. And I can see why, what a beautiful home. We were only able to stop by for a little while but were able not only to see, hug and catch up (a little) but also got the benefit of staying for grace and a healing prayer for Adam. I have already said it but Adam, his mom, his sister and me could use all the prayers we can get.
We love you and we thank you, Laura, Mark, Morgan, Sara, Ashley, Heather, Janet, Craig, Miriam, John, their kids, Mark, Sue, Ben, Paul, Jean, all of Mark's family, and Paul III (who was not there). I really hope that the B. family reunion apparently being planned by Laura and Perry comes to fruition.
Nobody has ever before asked the nuclear family to live all by itself in a box the way we do. With no relatives, no support, we've put it in an impossible situation. ~Margaret Mead
We love you and we thank you, Laura, Mark, Morgan, Sara, Ashley, Heather, Janet, Craig, Miriam, John, their kids, Mark, Sue, Ben, Paul, Jean, all of Mark's family, and Paul III (who was not there). I really hope that the B. family reunion apparently being planned by Laura and Perry comes to fruition.
Nobody has ever before asked the nuclear family to live all by itself in a box the way we do. With no relatives, no support, we've put it in an impossible situation. ~Margaret Mead
petscan results
Dr. Kuttesch called Martha. The petscan that Adam went through last Friday reveals no other tumors in his orbitals or his brain. There is some density in his neck but Dr. Kuttesch is optimistic that this is not a problem, though he couldn't be unequivocal. The petscan is an excellent imaging test but does have some limitations and so the tests Adam will have on Thursday will confirm these results.
This is good news. Dr. Kuttesch will be rounding at Childrens Hospital on Friday and will meet with us then to discuss the extent of the chemo after Adam's procedures. Adam will be getting a 'central line' implanted, having a bone marrow sample taken and starting chemotherapy.
This is good news. Dr. Kuttesch will be rounding at Childrens Hospital on Friday and will meet with us then to discuss the extent of the chemo after Adam's procedures. Adam will be getting a 'central line' implanted, having a bone marrow sample taken and starting chemotherapy.
Sunday, March 23, 2008
call out from the Presbyterians
Happy Easter! We went to Jared and Heather's church this morning; the First Alpharetta Presybterian Church. The service was lovely. I was impressed by the music. At St. Edwards, where we go, the music is very contemporary. There is nothing wrong with that but it was nice to hear Bach and Wagner. The choir was good and the musicians were first class.
Adam was very dapper in dress but I had to keep nudging him to focus and stay awake. What did get his attention was when the associate pastor reminded folks to keep in mind their own prayer intentions and then announced that special prayers should be said for "Adam Brinson, the nephew of Jared and Heather Brinson." She went on to give a basically accurate account of what is going on with Adam. I teared up and gave Adam a hug. It's strange having folks you don't even know giving your son a prayerful 'call out' at church. It is strange, but moving all the same.
The pastor gave a very timely sermon. I wondered later if he had taken Adam into account or if it was just happenstance. He spent some time speaking on 'what are we looking for' in the risen Christ. He mentioned that sometimes 'our own bodies betray us' and that despite so much good being in the world there is so much pain and suffering. He asked have we ever wept, like Mary did at the opened tomb. Three weeks ago I would have said No. But when he asked, I remembered back to the day at Dr. Kuttesch's office, when Martha began to weep. I remembered my own weeping moment in the car driving home from the hospital that day. The pastor said that having wept is not the same as having cried. It involved anguish and a shocking realization that things will not be the same. It even involves anger at God. 'God, this can not be', as the pastor said. I am still there. My own faith is at best very fragile. And to the degree that I truly believe I am very angry. Pissed even.
I am reading a book called "When Things Fall Apart". It is written by a Buddhist nun. It teaches that to breathe, to focus on the out breath, is a way to connect with other beings, the universe, God. It may not be conventionally Christian but I think that right now it's the best I can do. To breathe. There is a Buddhist practice called Tonglen. It is very simple. You breathe in all that hurts, disables, impoverishes and you breathe out all that heals, connects and enriches. It calls for you to focus on someone you love or on all who suffer. When I kneel down at church this is what I do. I breathe in all of Adam's cancer and future pain from chemo and I breathe out all that will help him endure and, once medically healed, grow strong again.
Happy Easter.
I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me. --Thomas Merton
Adam was very dapper in dress but I had to keep nudging him to focus and stay awake. What did get his attention was when the associate pastor reminded folks to keep in mind their own prayer intentions and then announced that special prayers should be said for "Adam Brinson, the nephew of Jared and Heather Brinson." She went on to give a basically accurate account of what is going on with Adam. I teared up and gave Adam a hug. It's strange having folks you don't even know giving your son a prayerful 'call out' at church. It is strange, but moving all the same.
The pastor gave a very timely sermon. I wondered later if he had taken Adam into account or if it was just happenstance. He spent some time speaking on 'what are we looking for' in the risen Christ. He mentioned that sometimes 'our own bodies betray us' and that despite so much good being in the world there is so much pain and suffering. He asked have we ever wept, like Mary did at the opened tomb. Three weeks ago I would have said No. But when he asked, I remembered back to the day at Dr. Kuttesch's office, when Martha began to weep. I remembered my own weeping moment in the car driving home from the hospital that day. The pastor said that having wept is not the same as having cried. It involved anguish and a shocking realization that things will not be the same. It even involves anger at God. 'God, this can not be', as the pastor said. I am still there. My own faith is at best very fragile. And to the degree that I truly believe I am very angry. Pissed even.
I am reading a book called "When Things Fall Apart". It is written by a Buddhist nun. It teaches that to breathe, to focus on the out breath, is a way to connect with other beings, the universe, God. It may not be conventionally Christian but I think that right now it's the best I can do. To breathe. There is a Buddhist practice called Tonglen. It is very simple. You breathe in all that hurts, disables, impoverishes and you breathe out all that heals, connects and enriches. It calls for you to focus on someone you love or on all who suffer. When I kneel down at church this is what I do. I breathe in all of Adam's cancer and future pain from chemo and I breathe out all that will help him endure and, once medically healed, grow strong again.
Happy Easter.
I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me. --Thomas Merton
Saturday, March 22, 2008
Roller coaster rider
We took Adam to Six Flags Over Georgia today. Uncle Jared and Adam's young cousin Kira joined us. We are sort of amusement park junkies but generally Adam has been a little nervous about riding the newer, more extreme roller coasters. Today Adam road every one of the coasters we could get on; from the Scream Machine, to Mind Bender, to Batman the Ride and a lot of others I can't remember the names for. It was a beautiful day too. Perfect temp and all sunshine.
It was a great day.
It was a great day.
Friday, March 21, 2008
Fell asleep
Adam did great at his petscan. The radioactive isotope injection hurt, the waiting for an hour was boring, but when he actually had to be strapped onto the petscan table he was calm, cool and collected. He actually fell asleep! The technician said it could not have gone better as far as Adam's 'performance'.
We will know the results next week. We are optimistic that this scan will reveal no other tumors but are also well aware that we don't know nothin'.
We drove to Atlanta, or should I say Alpharetta, tonight to spend Easter weekend with Jared, Heather, Kira and Scott. Tomorrow we are going to Six Flags. Camille is still hanging out with Bear and Juju. Hopefully she is not wearing them out too much....
We will know the results next week. We are optimistic that this scan will reveal no other tumors but are also well aware that we don't know nothin'.
We drove to Atlanta, or should I say Alpharetta, tonight to spend Easter weekend with Jared, Heather, Kira and Scott. Tomorrow we are going to Six Flags. Camille is still hanging out with Bear and Juju. Hopefully she is not wearing them out too much....
Thursday, March 20, 2008
Not like Christmas
The love people give is great. I would like to thank everyone for your outpouring. Adam would think this was like Christmas if he didn't know the real deal, which he does. But still, the books, books on cd, cards, games and simple words of encouragement are much appreciated.
Thanks Mary, Ben, Uncle Jared, Aunt Heather, Aunt Lucy, Uncle Jay, Miriam, David, Jeanette, Kevin, Lyn, Doug, Alisa, Scott, Carson, Mark, Nan, Kay, Susan, Terry, Yolanda, Marie, Jean, Ann, Luis, Michael, Kenny, John, Carolyn, Felix, Anna, Jane, Lucky, Mr. Hubble, Ms. Dooley, Ms. Garman, Juju, Bear, Grand Ma, Cathy, David, Rob and the Gallagers, Carter and the Gregorys, Betty Lou, Jim, William, Cecile, Ms. Michelle, Heathy, Chip, Trip, John, Julia, Fin, JP, Susie, Dr. Christy, Frances, Mel, Pam, Antonio and Ron........I know I have missed folks.
We are only at the beginning of this thing. People ask "How is Adam?" He's fine. He is slowly coming to terms I think. But the reality won't set in until next weekend when the chemo starts.
I keep on thinking "where will we be a month from now?", 6 months.....I realize it's best to think One day at a time, at least that's what Nan would say....but I am only human. I, we need you. We need you to tell us you care and ask how things are even when we or I seem to minimize, "everything is ok", so please keep checking in. It will never be taken for granted.
"The love you take is equal to the love you make" or something like that. We will be taking a lot. And I will work forever to make it up.
We are going to an Olympic Qualitfying soccer game downtown tonight; USA v. Canada. We may be the only ones there. I don't think pro soccer will ever take off in the USA. Tomorrow Adam cannot eat past 915am due to the Pet scan at 345. He'll eat a humongous breakfast. His old friend William is coming over to hang out. That's cool. They haven't seen each other in a while and William deals with his own chronic illness and may have some 11 year old words of wisdom for Adam.
Thanks Mary, Ben, Uncle Jared, Aunt Heather, Aunt Lucy, Uncle Jay, Miriam, David, Jeanette, Kevin, Lyn, Doug, Alisa, Scott, Carson, Mark, Nan, Kay, Susan, Terry, Yolanda, Marie, Jean, Ann, Luis, Michael, Kenny, John, Carolyn, Felix, Anna, Jane, Lucky, Mr. Hubble, Ms. Dooley, Ms. Garman, Juju, Bear, Grand Ma, Cathy, David, Rob and the Gallagers, Carter and the Gregorys, Betty Lou, Jim, William, Cecile, Ms. Michelle, Heathy, Chip, Trip, John, Julia, Fin, JP, Susie, Dr. Christy, Frances, Mel, Pam, Antonio and Ron........I know I have missed folks.
We are only at the beginning of this thing. People ask "How is Adam?" He's fine. He is slowly coming to terms I think. But the reality won't set in until next weekend when the chemo starts.
I keep on thinking "where will we be a month from now?", 6 months.....I realize it's best to think One day at a time, at least that's what Nan would say....but I am only human. I, we need you. We need you to tell us you care and ask how things are even when we or I seem to minimize, "everything is ok", so please keep checking in. It will never be taken for granted.
"The love you take is equal to the love you make" or something like that. We will be taking a lot. And I will work forever to make it up.
We are going to an Olympic Qualitfying soccer game downtown tonight; USA v. Canada. We may be the only ones there. I don't think pro soccer will ever take off in the USA. Tomorrow Adam cannot eat past 915am due to the Pet scan at 345. He'll eat a humongous breakfast. His old friend William is coming over to hang out. That's cool. They haven't seen each other in a while and William deals with his own chronic illness and may have some 11 year old words of wisdom for Adam.
Wednesday, March 19, 2008
Here we go
Adam is doing great. He seems healthy and although he basically knows that he has an illness and will be getting treatment his mood is up and he is just being Adam. Goofing around, playing with the neighbor kids, watching tv (of course) and playing video games and not eating what he should. It's like the calm before the storm.
It feels like we are waiting for Adam to go get totured for his own good. The more we read about chemo and its effects the more this seems to be true. The folks who will do it will be loving, good people who have Adam's best interests at heart. But to Adam it will be a nightmare. He hasn't even begun this thing yet and my heart aches for him.
Ok enough....
Adam gets to skip an appt tomorrow with Dr. Collier because the tests, which he will get Friday and next Thursday, have not occured yet so there is no reason to go. He will actually be able to go back to school for a two days next week before having to go into home bound.
Next Friday, March 28th, he goes into surgery. He will have a 'central line' inplanted, a bone marrow sample taken and he will start his chemotherapy. He will be in Vanderbilt Childrens Hospital for more than one night, but we don't actually know beyond that.
We have received so many good wishes, prayers, offers to help, baby sit or pick up Camille from her pre school. People really are good. And Martha and I can't say how much we feel cared for and loved. How many love Adam. One of my coworker's mother wants to paint a portrait of Adam kicking a soccer ball, one of his favorite things; another has a plan to send several of those silly singing get well cards. Adam must be on a hundred prayer lists. The more the better! People are really good, but I wish I could trade all of that good feeling and love for Adam to be healthy and not facing this terrible reality.
It feels like we are waiting for Adam to go get totured for his own good. The more we read about chemo and its effects the more this seems to be true. The folks who will do it will be loving, good people who have Adam's best interests at heart. But to Adam it will be a nightmare. He hasn't even begun this thing yet and my heart aches for him.
Ok enough....
Adam gets to skip an appt tomorrow with Dr. Collier because the tests, which he will get Friday and next Thursday, have not occured yet so there is no reason to go. He will actually be able to go back to school for a two days next week before having to go into home bound.
Next Friday, March 28th, he goes into surgery. He will have a 'central line' inplanted, a bone marrow sample taken and he will start his chemotherapy. He will be in Vanderbilt Childrens Hospital for more than one night, but we don't actually know beyond that.
We have received so many good wishes, prayers, offers to help, baby sit or pick up Camille from her pre school. People really are good. And Martha and I can't say how much we feel cared for and loved. How many love Adam. One of my coworker's mother wants to paint a portrait of Adam kicking a soccer ball, one of his favorite things; another has a plan to send several of those silly singing get well cards. Adam must be on a hundred prayer lists. The more the better! People are really good, but I wish I could trade all of that good feeling and love for Adam to be healthy and not facing this terrible reality.
words to live by
Do not fear what may happen tomorrow. The same loving Father who cares for you today will care for you tomorrow and everyday. Either he will shield you from suffering or He will give you unfailing strength to bear it. Be at peace then and put aside all anxious thoughts and imaginings.
St. Francis de Sales
thanks Frances de SJRI
St. Francis de Sales
thanks Frances de SJRI
Tuesday, March 18, 2008
PETscan
A petscan is supposed to be the 'gold standard' for diagnosis. Adam has one scheduled this Friday at 345. Apparently a petscan can see much better than a CTscan, distinguishing between different kinds of densities. In other words not confusing tumors with other more benign things like histoplasmosis.
Positron emission tomography (PET) is a nuclear medicine imaging technique which produces a three-dimensional image or map of functional processes in the body. The system detects pairs of gamma rays emitted indirectly by a positron-emitting radioisotope, which is introduced into the body on a metabolically active molecule. Images of metabolic activity in space are then reconstructed by computer analysis, often in modern scanners aided by results from a CT X-ray scan performed on the patient at the same time, in the same machine.
Got that, there'll be a test later.....
Positron emission tomography (PET) is a nuclear medicine imaging technique which produces a three-dimensional image or map of functional processes in the body. The system detects pairs of gamma rays emitted indirectly by a positron-emitting radioisotope, which is introduced into the body on a metabolically active molecule. Images of metabolic activity in space are then reconstructed by computer analysis, often in modern scanners aided by results from a CT X-ray scan performed on the patient at the same time, in the same machine.
Got that, there'll be a test later.....
Monday, March 17, 2008
Update
We have a meeting with Dr. Kuttesch's colleague, Dr. Collier, this Thursday at 115. Unfortunately Adam will not start his tests until Friday. He has a PET scan at 345 on Friday. I am not exactly sure what a PET scan is but I am sure we will hear all about it on Thursday.
We were planning, and we know what God says about man and plans, to take Adam on a Lego adventure this Friday. Cindy, the social worker at the Cancer Center, says having a child in cancer treatment is like always being about to give birth. You never know when you will have to go to the hospital and you should always have a bag ready to go, and 'that's the way it will be until his treatement is complete.' Great.
After Friday's scan Adam does not have another appointment until Thursday, March 27th. He has to be at Vandy Childrens that day from 12 until whenever. He has a bone scan, a CT scan body scan and an MRI.
I am used to knowing what is going on, or at least pretending like I know what is going on. I have no idea right now what is going on. I still assume that if these scans turn up clean Adam will be spared the worst but will still have to go through chemo. But I don't really know that either. After Thursday hopefull I will know more.
We have heard from so many people. Family, friends, old friends, folks we really don't even know. Your messages, your calls and your thoughts, prayers and meditations are all very much appreciated and absolutely not taken for granted. Thank you from the bottom of my heart.
We were planning, and we know what God says about man and plans, to take Adam on a Lego adventure this Friday. Cindy, the social worker at the Cancer Center, says having a child in cancer treatment is like always being about to give birth. You never know when you will have to go to the hospital and you should always have a bag ready to go, and 'that's the way it will be until his treatement is complete.' Great.
After Friday's scan Adam does not have another appointment until Thursday, March 27th. He has to be at Vandy Childrens that day from 12 until whenever. He has a bone scan, a CT scan body scan and an MRI.
I am used to knowing what is going on, or at least pretending like I know what is going on. I have no idea right now what is going on. I still assume that if these scans turn up clean Adam will be spared the worst but will still have to go through chemo. But I don't really know that either. After Thursday hopefull I will know more.
We have heard from so many people. Family, friends, old friends, folks we really don't even know. Your messages, your calls and your thoughts, prayers and meditations are all very much appreciated and absolutely not taken for granted. Thank you from the bottom of my heart.
Sunday, March 16, 2008
Just waiting
Went to church today, and really meant it. My own spirituality is always in doubt, but that's no reason to not take advantage of whatever God, Greater Power or the Universe can offer.
Going to St. Edwards always makes me feel good. Fr. Breen is the best. Adam even paid attention today, which was a little unusual. Happy Palm Sunday.
We are just waiting now. Dr. Kuttesch told us that we should hear from his office by 1pm tomorrow concerning appt times for the body scan and MRI. Hoping it will be in the beginning of the week so that we can take Adam on a fun trip next weekend. But we will deal with whatever comes down.
Going to St. Edwards always makes me feel good. Fr. Breen is the best. Adam even paid attention today, which was a little unusual. Happy Palm Sunday.
We are just waiting now. Dr. Kuttesch told us that we should hear from his office by 1pm tomorrow concerning appt times for the body scan and MRI. Hoping it will be in the beginning of the week so that we can take Adam on a fun trip next weekend. But we will deal with whatever comes down.
More info on Rhabdo
Rhabdomyosarcoma
Recommended: NCI PDQ for rhabdomyosarcoma
On this site: Warning Signs of Childhood Cancer: Rhabdomyosarcoma
Rhabdomyosarcoma is a fast-growing, highly malignant tumor which accounts for over half of the soft tissue sarcomas in children. Less frequently, other soft tissue sarcomas are found in children: fibrosarcoma, mesenchymoma, synovial sarcoma, and liposarcoma.
Rhabdomyosarcoma often causes a noticeable lump on a child's body. If the tumor is located internally, the symptoms depend on its location. For example, tumors in the nasal passage may put pressure on the eustachian tubes; a bladder tumor can cause trouble urinating; an orbital tumor may cause the eye to protrude.
About Rhabdomyosarcoma
Rhabdomyosarcoma tumors arise from a cell called a "rhabdomyoblast", which is a primitive muscle cell. Instead of differentiating into striated muscle cells, the rhabdomyoblasts grow out of control. Since this type of muscle is located throughout the body, the tumors can appear at numerous locations. The four major sites in which rhabdomyosarcoma is found are:
head and neck; around the eyes -- 35-40%
genitourinary tract -- 20%
extremities -- 15-20%
trunk (chest and lungs) -- 10-15%
Depending on the "histology" of the cells (how they look under a microscope), the tumors are classified as one of the following:
Embryonal rhabdomyosarcoma. Most common type, usually found in children under 15 and in the head and neck region and genitourinary tract.
Botryoid type. A variant of the embryonal type; the tumor arises as a grape-like lesion in mucosal-lined hollow organs such as the vagina and urinary bladder.
Alveolar type. A more aggressive tumor which usually involves the muscles of the extremities or trunk.
Pleomorphic type. Usually seen in adults and arises in muscles of the extremities.
Embryonal rhabdomyosarcoma is considered the most treatable form of the disease. The prognosis is also affected by the location of the primary tumor. Orbital and genitourinary track rhabdomyosarcomas have a better prognosis than do tumors which originate in the head and neck, extremity, pelvic, and trunk locations.
Prognosis also depends on the stage of the tumor. The Intergroup Rhabdomyosarcoma Study Group has defined a set of guidelines, which assign the tumor to groups 1-4 depending on the extent of the disease. For more information, see the PDQ on the staging of rhabdomyosarcoma.
Treatment
Rhabdomyosarcoma is treated by a combination of surgery, chemotherapy, and radiation.
Surgery. Resection (removal) of the primary tumor. If necessary after chemotherapy or radiation has shrunk the tumor.
Chemotherapy. The following chemotherapy agents are commonly used: vincristine, cyclophosphamide, dactinomycin, adriamycin, ifosfamide, VP-16.
Radiation. External beam radiation is used in some cases of rhabdomyosarcoma.
Rhabdomyosarcoma clinical trials, NCI search form
Statistics
Heavey stuff, but the form of Rhabdo that Adam has, the embryonal type, is very treatable.
Recommended: NCI PDQ for rhabdomyosarcoma
On this site: Warning Signs of Childhood Cancer: Rhabdomyosarcoma
Rhabdomyosarcoma is a fast-growing, highly malignant tumor which accounts for over half of the soft tissue sarcomas in children. Less frequently, other soft tissue sarcomas are found in children: fibrosarcoma, mesenchymoma, synovial sarcoma, and liposarcoma.
Rhabdomyosarcoma often causes a noticeable lump on a child's body. If the tumor is located internally, the symptoms depend on its location. For example, tumors in the nasal passage may put pressure on the eustachian tubes; a bladder tumor can cause trouble urinating; an orbital tumor may cause the eye to protrude.
About Rhabdomyosarcoma
Rhabdomyosarcoma tumors arise from a cell called a "rhabdomyoblast", which is a primitive muscle cell. Instead of differentiating into striated muscle cells, the rhabdomyoblasts grow out of control. Since this type of muscle is located throughout the body, the tumors can appear at numerous locations. The four major sites in which rhabdomyosarcoma is found are:
head and neck; around the eyes -- 35-40%
genitourinary tract -- 20%
extremities -- 15-20%
trunk (chest and lungs) -- 10-15%
Depending on the "histology" of the cells (how they look under a microscope), the tumors are classified as one of the following:
Embryonal rhabdomyosarcoma. Most common type, usually found in children under 15 and in the head and neck region and genitourinary tract.
Botryoid type. A variant of the embryonal type; the tumor arises as a grape-like lesion in mucosal-lined hollow organs such as the vagina and urinary bladder.
Alveolar type. A more aggressive tumor which usually involves the muscles of the extremities or trunk.
Pleomorphic type. Usually seen in adults and arises in muscles of the extremities.
Embryonal rhabdomyosarcoma is considered the most treatable form of the disease. The prognosis is also affected by the location of the primary tumor. Orbital and genitourinary track rhabdomyosarcomas have a better prognosis than do tumors which originate in the head and neck, extremity, pelvic, and trunk locations.
Prognosis also depends on the stage of the tumor. The Intergroup Rhabdomyosarcoma Study Group has defined a set of guidelines, which assign the tumor to groups 1-4 depending on the extent of the disease. For more information, see the PDQ on the staging of rhabdomyosarcoma.
Treatment
Rhabdomyosarcoma is treated by a combination of surgery, chemotherapy, and radiation.
Surgery. Resection (removal) of the primary tumor. If necessary after chemotherapy or radiation has shrunk the tumor.
Chemotherapy. The following chemotherapy agents are commonly used: vincristine, cyclophosphamide, dactinomycin, adriamycin, ifosfamide, VP-16.
Radiation. External beam radiation is used in some cases of rhabdomyosarcoma.
Rhabdomyosarcoma clinical trials, NCI search form
Statistics
Heavey stuff, but the form of Rhabdo that Adam has, the embryonal type, is very treatable.
Saturday, March 15, 2008
'Rhabdomyosarcoma'
Dr. Kuttesch, to his everlasting credit, called us around 7 on Friday night, 3/14. He had received the initial path report. He said Adam had something called Rhabdomyosarcoma. This is a soft tissue tumor found not uncommonly in the orbital sockets. Dr. Kuttesch specializes in these kinds of tumors. He also said that the surgery really had gone as well as it could have and according to Dr. Mawn's notes she had done a 'Gross Total Resection' meaning that from what she could tell she got the whole thing out.
Even so Adam will have to undergo chemo but according to Dr. K the gross total resection indicates that as long as his total body scan and MRI come back clean the chemo will be less intensive.
The next steps for Adam is to get his scans next week, visit with Dr. K's colleague Dr. Collier, and then to go back into surgery to get a bone marrow sample and inplant a 'central line' into his chest where the chemo medicine will be injected.
Martha thought that we should do something fun with Adam next weekend: we may go to Lego Land in San Diego. Adam would love it.
Camille is going down to stay with Juju and Bear for the next week or so. She knows her brother had surgery but is blissfully unaware of all the other mess. She will have a blast with Juju and Bear....as long as they can keep up.
Adam's best friend Antonio is coming to spend the night. Adam went to his soccer practice yesterday, despite his eye still being a little tender, but his game has been rained out. We want to give Adam a chance to do as many normal things as possible.
His school, Meigs Magnet, has been great about getting him his work and helping us understand how to set him up in Homebound. The principal and the teachers obviously care about Adam and we really appreciate their concern.
Even so Adam will have to undergo chemo but according to Dr. K the gross total resection indicates that as long as his total body scan and MRI come back clean the chemo will be less intensive.
The next steps for Adam is to get his scans next week, visit with Dr. K's colleague Dr. Collier, and then to go back into surgery to get a bone marrow sample and inplant a 'central line' into his chest where the chemo medicine will be injected.
Martha thought that we should do something fun with Adam next weekend: we may go to Lego Land in San Diego. Adam would love it.
Camille is going down to stay with Juju and Bear for the next week or so. She knows her brother had surgery but is blissfully unaware of all the other mess. She will have a blast with Juju and Bear....as long as they can keep up.
Adam's best friend Antonio is coming to spend the night. Adam went to his soccer practice yesterday, despite his eye still being a little tender, but his game has been rained out. We want to give Adam a chance to do as many normal things as possible.
His school, Meigs Magnet, has been great about getting him his work and helping us understand how to set him up in Homebound. The principal and the teachers obviously care about Adam and we really appreciate their concern.
'Bad news'
It started with a bump on Adam's left eye. It looked like it was just in his eye lid. That was about three weeks ago. We took him to his doctor who then referred us to an eye specialist, Dr. Debra Sherman. She thought it was probably a benign dermoid cyst and scheduled surgery for March 31st. She also ordered a CT Scan on Adam's orbital sockets to see what we were dealing with. It all seemed very controllable and planned out. She had also taken pictures of Adam's eye in her office. The CT Scan went very well. The nurses were great and Adam never flinched when the nurse put in his IV. He did cringe a little when the IV tape was taken off before we left. The CT Scan seemed to confirm what Dr. Sherman was thinking. It looked like a dermoid cyst.
The problem was that the bump on his eye kept growing. Adam said he didn't feel anything but he looked like he had been popped in the eye except there was no bruising. Adam has never complained about this thing and through all that was about to go down over the next 48 hours he only complained of being bored.
Martha and I didn't know if we were just seeing things but it seemed to be growing fast. Martha made another appointment with Dr. Sherman. She took another set of pictures. The comparison indicated that there had been significant growth. Enough for her to call her friend, Dr. Louise Mawn, an eye surgery specialist at Vanderbilt, to ask that she take a look. We found out later that Dr. Sherman had already guessed what was going on and had told Dr. Mawn.
On Wednesday, 3/12, we went to Dr. Mawn's office. She examined Adam of course, but what really hit home was the pictures from a couple of weeks prior with the pictures taken the day before. Looking back on it I can tell she was very concerned about what she was seeing. She didn't let on that she pretty much already knew, but she was very pro getting this thing out. She reviewed the pros and cons, but it was clear, Adam was going to surgery that day. She went on and on about how great Vanderbilt is for this kind of thing. Reassuring us that Adam was in the best place he could be for this kind of procedure. Looking back, it seems clear she was getting us ready for some really bad news. But we were still in, 'this is just a simple cyst that needs to be removed and everything will go back to normal land', I already miss that place very much.
He would have to get an 'orbital' MRI first. And she went ahead and scheduled a post surgery appoitntment with her colleauge, Dr. John Kuttesch, for 2pm on 3/13. We didn't really consider at that point what kind of specialist Dr. Kuttesch was. It's not that she didn't say 'oncologist' we just didn't connect it. I was thinking that must just be a precaution that Dr. Mawn was taking.
The worst experience for Adam so far was the MRI. The tech was not particularly great with getting the IV in as the nurse had been when Adam got his CT Scan. He had to 'stay still' for over one hour in this very powerful and very loud magnet. The Vanderbilt MRI staff weren't on their A game that day. Generally our experience with Children Hospital has so far been very positive (except for the fact that we hate to have to be there), most of the staff are good with kids and empathic toward families, but the MRI staff seemed more like a factory line, moving em in and moving em out.
The MRI completed, we went directly to the third floor of Childrens Hospital to get Adam into surgery. Still thinking that we were getting close to being done with this nuisance I was thinking about eating. Adam had been NPO since eating a poptart at 630am. Martha and I had had nothing to eat. I was starving and even thinking that the Taco Bell on the 2nd floor was looking pretty good. It took a little while to prep Adam. Adam was continuing his usual stoic thing throughout all of this. He got into his gown. He got in the special hospital bed for eye surgery. He watched cartoons. Several folks came by to talk and ask questions, mostly of the giving consent for treatment and family history type. Around 230pm Adam was taken back to surgery.
Martha and I went to get something to eat. Taco Bell was a disappointment but did the trick. Martha, being the smarter one, got a salad from the deli. We were almost done. Adam would be out of surgery and would spend the night on a '23 hour' stay. And then we would go home.
Adam's surgery went very well. The 'bump' came out fine. This was part of what we heard from Dr. Mawn in the post op meeting. What we didn't hear as well was that what she took out did NOT appear to be benign but there was nothing else she could really tell us. The tissue sample would be sent out to be tested. The pathology report would give us more information. And Dr. Kuttesch would tell us more specifics. Even then, though I heard what she said, it didn't hit home at all.
I had called my parents earlier that day and told them that unexpectedly Adam had to go into surgery and we anticipated he would have to stay out of school for a few days. I asked if they could come up and help baby sit. Of course, they were on the road within an hour of the call. By the time Adam was out of surgery and waiting to be taken to his room my parents were entering Nashville. I went to go meet them at home. Adam's nurse in the recovery area was great, as were the nurses up on the unit.
My parents and myself went to buy Adam some comic books and because he was still not in his room we went to get some pizza. After he got into his room we went over to park and go up. We delayed for a few minutes when a doctor asked us to give him a jump in the parking lot. His battery was too dead and would not start even with our help.
We went up, comic books and pizza in hand, and met Adam and Martha in his room. Adam was pretty out of it, but not enough not to be watching cartoons. He wasn't in a really chatty mood understandably. We hung out for a little while and then left them in peace.
The next day I went to join Adam and Martha to wait for his discharge. At about 1030am we left. We had an appointment with Dr. Kuttesch that afternoon at 2pm so we went home and hung out with Juju and Bear. At this point we were all assuming that our meeting with Dr. Kuttesch would be just a perfunctory meeting letting us know that Adam was ok.
We arrived at Vanderbilt Childrens Hospital at about 130. We went up to the 6th floor to the Child Cancer Center (not pediatric oncology). That was the beginning for me of what we were dealing with. Sitting and waiting I notice other families. Some of them were like us, probably just got diagnosed but looked very heatlthy. Others were is some stage of treatment. Partial or complete hair loss. It also struck me that clearly for many of these families this visit was routine, a part of their lives. They didn't look anxious or worried. This was just the way it is.
Adam's name is called and I have to go retreave him from playing with the video games. We are led to an examination room where we wait. The wait seems long but really isn't. Dr. Kuttesch, a short round man with suspenders and a big mustache, comes into the room and notices that Adam still has his IV from the hospital. We requested they leave it in so that Adam wouldn't have to get another stick. Dr. K seemed a little annoyed because he wouldn't be needing any more blood than was already collected at the hospital and they should have known to tell us that.
Dr. K introduced himself, sat down and spoke directly to Adam. He reviewed our family histories. Then he got to business. Dr. K said that he was the Cancer Doctor and that was what we were there to talk about. He said Adam's tumor was malignant and would require treatment by chemotherapy at the very least. The treatments will go on for a year at least. The type and intensity of treatment will be determined once he gets the full pathology report and once Adam gets a full body CT Scan and yet another MRI. Dr. K was kind and patient and repetitive throughout our meeting with him. As the information hit, and as we truly heard, Martha began to cry, I was still and Adam listened. The social worker, Cindy, also joined the meeting. She immediately started to tell us about the resources available; support groups, counseling, financial aid if one of us would have to quit work, help with getting Adam on Homebound status at school. She encouraged us not to let the Clinic become our whole life.
It was all too fucking much. Quitting jobs, homebound schooling, not having a life outside treatment. God Damn! I am sure from their perspective we are typical. F. Scott Fitzgerald was asked how he went broke, 'Gradually, then suddenly.' That was what it was like a trickle of awareness, then a deluge. As my own denial of the situation faded I stood up saw that Martha was sinking and went to sit by her and hold her. Adam had earlier said he was bored and wanted to go eat some treats and watch tv. We let him. But he had heard and would talk to me later.
Dr. K emphasized that we still didn't know a lot. We still didn't know what type of tumor precisely we were dealing with. He repeatedly told us about types and subtypes and how this would determine treatment.
We hadn't gone to Dr. Kuttesch for a routine summary of how Adam had no problems and could be on his way.
We went to Dr. Kuttesch becasue Adam has been diagnosed with Cancer and even though we are still looking for the precise type, this diangosis was not in doubt. Dr. Kuttesch is the Cancer Doctor.
The problem was that the bump on his eye kept growing. Adam said he didn't feel anything but he looked like he had been popped in the eye except there was no bruising. Adam has never complained about this thing and through all that was about to go down over the next 48 hours he only complained of being bored.
Martha and I didn't know if we were just seeing things but it seemed to be growing fast. Martha made another appointment with Dr. Sherman. She took another set of pictures. The comparison indicated that there had been significant growth. Enough for her to call her friend, Dr. Louise Mawn, an eye surgery specialist at Vanderbilt, to ask that she take a look. We found out later that Dr. Sherman had already guessed what was going on and had told Dr. Mawn.
On Wednesday, 3/12, we went to Dr. Mawn's office. She examined Adam of course, but what really hit home was the pictures from a couple of weeks prior with the pictures taken the day before. Looking back on it I can tell she was very concerned about what she was seeing. She didn't let on that she pretty much already knew, but she was very pro getting this thing out. She reviewed the pros and cons, but it was clear, Adam was going to surgery that day. She went on and on about how great Vanderbilt is for this kind of thing. Reassuring us that Adam was in the best place he could be for this kind of procedure. Looking back, it seems clear she was getting us ready for some really bad news. But we were still in, 'this is just a simple cyst that needs to be removed and everything will go back to normal land', I already miss that place very much.
He would have to get an 'orbital' MRI first. And she went ahead and scheduled a post surgery appoitntment with her colleauge, Dr. John Kuttesch, for 2pm on 3/13. We didn't really consider at that point what kind of specialist Dr. Kuttesch was. It's not that she didn't say 'oncologist' we just didn't connect it. I was thinking that must just be a precaution that Dr. Mawn was taking.
The worst experience for Adam so far was the MRI. The tech was not particularly great with getting the IV in as the nurse had been when Adam got his CT Scan. He had to 'stay still' for over one hour in this very powerful and very loud magnet. The Vanderbilt MRI staff weren't on their A game that day. Generally our experience with Children Hospital has so far been very positive (except for the fact that we hate to have to be there), most of the staff are good with kids and empathic toward families, but the MRI staff seemed more like a factory line, moving em in and moving em out.
The MRI completed, we went directly to the third floor of Childrens Hospital to get Adam into surgery. Still thinking that we were getting close to being done with this nuisance I was thinking about eating. Adam had been NPO since eating a poptart at 630am. Martha and I had had nothing to eat. I was starving and even thinking that the Taco Bell on the 2nd floor was looking pretty good. It took a little while to prep Adam. Adam was continuing his usual stoic thing throughout all of this. He got into his gown. He got in the special hospital bed for eye surgery. He watched cartoons. Several folks came by to talk and ask questions, mostly of the giving consent for treatment and family history type. Around 230pm Adam was taken back to surgery.
Martha and I went to get something to eat. Taco Bell was a disappointment but did the trick. Martha, being the smarter one, got a salad from the deli. We were almost done. Adam would be out of surgery and would spend the night on a '23 hour' stay. And then we would go home.
Adam's surgery went very well. The 'bump' came out fine. This was part of what we heard from Dr. Mawn in the post op meeting. What we didn't hear as well was that what she took out did NOT appear to be benign but there was nothing else she could really tell us. The tissue sample would be sent out to be tested. The pathology report would give us more information. And Dr. Kuttesch would tell us more specifics. Even then, though I heard what she said, it didn't hit home at all.
I had called my parents earlier that day and told them that unexpectedly Adam had to go into surgery and we anticipated he would have to stay out of school for a few days. I asked if they could come up and help baby sit. Of course, they were on the road within an hour of the call. By the time Adam was out of surgery and waiting to be taken to his room my parents were entering Nashville. I went to go meet them at home. Adam's nurse in the recovery area was great, as were the nurses up on the unit.
My parents and myself went to buy Adam some comic books and because he was still not in his room we went to get some pizza. After he got into his room we went over to park and go up. We delayed for a few minutes when a doctor asked us to give him a jump in the parking lot. His battery was too dead and would not start even with our help.
We went up, comic books and pizza in hand, and met Adam and Martha in his room. Adam was pretty out of it, but not enough not to be watching cartoons. He wasn't in a really chatty mood understandably. We hung out for a little while and then left them in peace.
The next day I went to join Adam and Martha to wait for his discharge. At about 1030am we left. We had an appointment with Dr. Kuttesch that afternoon at 2pm so we went home and hung out with Juju and Bear. At this point we were all assuming that our meeting with Dr. Kuttesch would be just a perfunctory meeting letting us know that Adam was ok.
We arrived at Vanderbilt Childrens Hospital at about 130. We went up to the 6th floor to the Child Cancer Center (not pediatric oncology). That was the beginning for me of what we were dealing with. Sitting and waiting I notice other families. Some of them were like us, probably just got diagnosed but looked very heatlthy. Others were is some stage of treatment. Partial or complete hair loss. It also struck me that clearly for many of these families this visit was routine, a part of their lives. They didn't look anxious or worried. This was just the way it is.
Adam's name is called and I have to go retreave him from playing with the video games. We are led to an examination room where we wait. The wait seems long but really isn't. Dr. Kuttesch, a short round man with suspenders and a big mustache, comes into the room and notices that Adam still has his IV from the hospital. We requested they leave it in so that Adam wouldn't have to get another stick. Dr. K seemed a little annoyed because he wouldn't be needing any more blood than was already collected at the hospital and they should have known to tell us that.
Dr. K introduced himself, sat down and spoke directly to Adam. He reviewed our family histories. Then he got to business. Dr. K said that he was the Cancer Doctor and that was what we were there to talk about. He said Adam's tumor was malignant and would require treatment by chemotherapy at the very least. The treatments will go on for a year at least. The type and intensity of treatment will be determined once he gets the full pathology report and once Adam gets a full body CT Scan and yet another MRI. Dr. K was kind and patient and repetitive throughout our meeting with him. As the information hit, and as we truly heard, Martha began to cry, I was still and Adam listened. The social worker, Cindy, also joined the meeting. She immediately started to tell us about the resources available; support groups, counseling, financial aid if one of us would have to quit work, help with getting Adam on Homebound status at school. She encouraged us not to let the Clinic become our whole life.
It was all too fucking much. Quitting jobs, homebound schooling, not having a life outside treatment. God Damn! I am sure from their perspective we are typical. F. Scott Fitzgerald was asked how he went broke, 'Gradually, then suddenly.' That was what it was like a trickle of awareness, then a deluge. As my own denial of the situation faded I stood up saw that Martha was sinking and went to sit by her and hold her. Adam had earlier said he was bored and wanted to go eat some treats and watch tv. We let him. But he had heard and would talk to me later.
Dr. K emphasized that we still didn't know a lot. We still didn't know what type of tumor precisely we were dealing with. He repeatedly told us about types and subtypes and how this would determine treatment.
We hadn't gone to Dr. Kuttesch for a routine summary of how Adam had no problems and could be on his way.
We went to Dr. Kuttesch becasue Adam has been diagnosed with Cancer and even though we are still looking for the precise type, this diangosis was not in doubt. Dr. Kuttesch is the Cancer Doctor.
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