28 plates

The generosity of folks we don't even know continues to astound me. The 3 foreign plates, one from Italy (it's actually an Italian 'tourist plate') and two from Belgium were given by Mrs. Rockafellow (great name!). She is the great aunt of Camille's friend Amalla. Adam is also friends with Gray, Mrs. Rockafellow's great nephew. Mrs. Rockafellow also gave Adam the New York 64 plate which commemorates the Worlds Fair of that year. These are artifacts that have meaning to the Rockafellow family and here they are giving them to Adam. I don't even know what to say to that.

But thank you.

3 chords

Martha took Adam and Camille to the Greenhills Y pool today. Adam apparently had a very good time despite getting tired easily. He will be able to spend the night with JP tomorrow night. And Camille will be with Suzie. Both need time apart.

I am very glad the work week is over. I can only pray, hope and visualize things getting easier at work....but I aint countin' on it. Things are tough all over and the psych hospital business in no exception.

Still practicing guitar. It's been a week now and I have trained my fingers to play exactly three chords. Now if I could just make songs out of them. Mick Jones, watch out.

Take care and have a great weekend.

I've been beat up,
I've been thrown out,
But I'm not down,
Oh I'm not down
I've been shown up,
but I've grown up
And I'm not down,
Oh I'm not down
--the clash

I'm not down.

Adam had his outpt chemo today. His blood count is very low and he may have to have a transfusion on Monday if it remains so. Martha thinks it is on the rebound. Personally I think Adam may benefit from a transfusion. His energy level has been down and his moodiness has been up.
This weekend Martha and I are going out Saturday night and staying in a local hotel. We are celebrating her birthday a week late. Adam will spend the night with JP, assuming he is healthy enough. Getting away from us may be helpful to Adam. Martha's friend Suzie offered to keep Camille for that night. Camille will be going to stay with Jared and Heather for two weeks this Sunday. She is very much looking forward to this trip and getting to hang out with Kira and Scott. She and Adam need a little apart time.

After next Thursday Adam goes on a two week chemo holiday. He goes to camp during the second week and we are planning a surprise for him in the first week. Hopefully it will work out. I have gotten time off work and Martha is trying to arrange everything else. She is the master at this kind of thing!

http://www.notesfromacrankydaddy.blogspot.com/

Our friend John is travelling across the country in a homemade teardrop trailer with his kids and his mother in law. I am not kidding. Check out his blog above.

garbage

I have really been trying to nurture a sense of inner peace and tranquility lately; especially at work. Sometimes I feel like George Castanza's father in Seinfeld when he looks up in a rage and screams, 'TRANQUILITY NOW!' My dad forwarded me one of the many junk emails that he is wont to send, but this one actually made sense. I am not going to forward it, I am going to post it.




Garbage Truck.

One day I hopped in a taxi and we took off for the airport. We were driving in the right lane when suddenly a black car jumped out of a parking space right in front of us. My taxi driver slammed on his brakes, skidded, and missed the other car by just inches! The driver of the other car whipped his head around and started yelling at us. My taxi driver just smiled and waved at the guy. And I mean, he was really friendly.So I asked, 'Why did you just do that? This guy almost ruined your car and sent us to the hospital!'
This is when my taxi driver taught me what I now call, 'The Law of the Garbage Truck.'He explained that many people are like garbage trucks. They run around full of garbage, full of frustration, full of anger, and full of disappointment. As their garbage piles up, they need a place to dump it and sometimes they'll dump it on you. Don't take it personally. Just smile, wave, wish them well, and move on. Don't take their garbage and spread it to other people at work, at home, or on the streets. The bottom line is that successful people do not let garbage trucks take over their day. Life's too short to wake up in the morning with regrets, so..... 'Love the people who treat you right. Pray for the ones who don't.' Life is ten percent what you make it and ninety percent how you take it!

memorial day

On this Memorial Day when I run in a few minutes I will not take my ipod. Instead I will focus on my breath, pray and remember all the soldiers who have given their lives for worthy and unworthy causes. I will remember warriors who believed in what they fought for and those that were reluctant to fight. I will remember warriors who gave their lives so others could be liberated from fascism and oppression. I will remember warriors who fought for peace and justice at home and paid a price. I will remember the children, women and men who died in war all across the world. I will pray for peace. And I will re-commit to work for justice.
Have a peaceful Memorial Day.

On this Memorial Day I wish peace and joy to all who read this blog.

Two Sundays after inpt chemo have been the days of bounce back for Adam. Yesterday was no different. It started off slowly. Adam was still dragging and down in mood. But as the day passed and we ate our dinner on the back porch Adam's mood was definitely improving. It improved more when we watched a movie together later.

A Prayer for Peace

Pope John XXIII

Lord Jesus Christ,
who are called the Prince of Peace,
who are yourself our peace and reconciliation,
who so often said,
"Peace to you,"
grant us peace.
Make all men and women witnesses of truth,
justice, and brotherly love.
Banish from their hearts whatever might endanger peace.
Enlighten our rulers that they may guarantee
and defend the great gift of peace.
May all peoples of the earth becomes as brothers and sisters.
May longed-for peace blossom forth
and reign always over us all.

soccer solidarity

We found out about Adam's diagnosis just as spring YMCA soccer was getting started. I remember Martha and I sitting on the field watching Adam practice. That was two days after the diagnosis was given. We knew he wouldn't be able to play in the season but wanted him to go to that practice anyway just to live normally a little bit longer. That was back in the slack-jawed stunned phase of all of this. We didn't know what to expect and it all seem surreal. That was Adam's last practice. He couldn't play in the season.

Adam really likes soccer. It's not that he is a great athlete but he has always enjoyed being on the teams. Coach Jason is an excellent coach. Very good with the boys, disciplined, but fun and always focuses on the fundamentals.

We ran into Jason at the Maryland Farms Y pool in Brentwood. Jason actually came up to us. He said he had something to give Adam. Jason went to his car and pulled this year's team jersey, signed by all the players, a trophy and a certificate. Jason said all the players voted to give Adam the "Bravest Player" award for the season and they are hoping Adam will be back in the fall.

Jason is a great coach, not just because he knows the game, but because he knows what it means to the kids. To Adam.

Stomach ache blues, but managing a sly smile.
New hair cut, like cousin Kira's.
Freshly painted house. Trying to grow grass.

http://www.tennessean.com/apps/pbcs.dll/article?AID=/20080525/NEWS06/805250412

Fr. Breen is one of the reasons I still consider myself Catholic. Check out this story. (click on the post above)

Sunday morning

Adam came home yesterday early afternoon from spending the night with Antonio. As I expected he was wiped out. He came home and went right sleep. Adam says he threw up once while at the cabin but didn't seem stressed. That has become normal. Today is his blood count 'nadir', about 11 days out from his last inpt chemo, and I hope to see Adam begin to bounce back. This has been the pattern. But he's not eating like he should and Martha and I are trying to figure out to 'make' him eat. His 'bounce' may be a little muted if he doesn't have the nutritional energy he needs. I don't know. Adam's never been a big eater to begin with but being sick has taken all his appetite.

It's been a beautiful holiday weekend so far. Last night we enjoyed ourselves at our neighbor's cookout. Martha made frequent checks on Adam but we still had a good time.

The summer is really here for the kids. Camille is excited, and at times a little scared, that in a couple of months she will be going to a new school for kindergarten. Adam has received his summer reading list. I suggested to Martha that we begin to expect Adam to read daily, not just comics, to get him ready. He has three real novels he has to read. Adam is a reader, but like most boys I think he needs a little nudge. And he can read even when he is feeling less energized than he would like.

Have a lovely Sunday. Please pray for Adam.

peace

The practice of peace and reconciliation is one of the most vital and artistic of human actions.”--Thich Nhat Hanh

plate count

27 and counting

two from paraguay

attitude choice

Yesterday was Adam's weekly outpt chemo visit. It was also one week since the last inpt chemo. As expected Adam was feeling down, fatigued and just out of sorts. This contrast with only the day before when he was practically hyper kinetic. Today he is still feeling tired (and actually had a pretty rough night) but that has been buoyed by being invited by his friend Antonio to spend the night at Antonio's grandmother's cabin. She had called earlier today to ask how Adam was doing and if it was ok to call and ask if Adam could come over and play with Antonio from time to time. I told her it was always, always, ok to call and ask. Adam's mood and energy level is so varied day to day you just never know. It is definitely a lift for me and Martha when Adam is able to get out with friends while he has been in treatment. JP came over on Wednesday afternoon, the day Adam was feeling so good, because Adam wanted to make a movie with JP (Adam has discovered the video function on our digital camera). Adam had been filming his Speed Racer hotwheels all afternoon and wanted some live actors. When Adam is engaged with others, and not being pulled down by his illness, all is right with the world.

Camille's and Adam's last day of school was yesterday. Here comes the summer. The Summer of 2008 will always be our Cancer Summer. I pray, hope and beg that it is the only summer we have with that title. Adam is about to have his chemo holiday in two weeks; right after his next inpt chemo. The second week of the holiday he will go to Camp Horizon. Then he starts radiation and continues with weekly chemo; but then we will be in the home stretch to the end. Adam will be going back to school, regular school not homebound, in the fall.

I am working on my guitar daily (of course, I just got it two days ago). I am also continuing to work on my breathing, attitude choice and reflectiveness (as opposed to reactiveness). This has paid off some this week but I am still very glad that the weekend is here. I need to run more. I have been lazy in the morning and it's too hot in the afternoon. Tomorrow is Martha's birthday but we are not going to celebrate until the next weekend. My folks are coming back up and I have a special plan for Martha. It's been another tough week at work but it is ending well. The boss even said to go home early, which is what I am about to do.

Tomorrow we are going to Regine and Todd's cookout. Maybe we will even go to the swimming pool this weekend; just have to make sure Adam is lathered up with sunscreen.

Have a good one!

good day

It's hard to tell when Adam is going to have a good day. A few days out from his last inpatient stay and today he had a really great day. Adam went to school! He went to get his yearbook signed and hang out with his school buds. I was nervous all day about how this would go. Adam could have been in a sour mood, he could have felt bad, his friends could have felt uncomfortable around the kid with cancer, who knows. But it was good. He was like a rock star, all the kids wanted to sit with him. He got his Meigs hat signed along with his yearbook. Martha got to touch base with the teachers and the guidance counselor. At this point we are planning to have him start with the rest of the rising 6th graders in August.

My cheap acoustic guitar arrived in the mail. Now all I have to do is tune it and learn to play it. Yee haw!

It's a day like to day that I think prayers and the sending of good vibes really does work.

Thank you.

new friends

Jody and Michael are some new friends of ours. Jody is a teacher at Camille's school and Michael is a professional musician. Some of my old fan boy friends would say he's living the dream. But he's really a regular guy with a lot of talent. Check out his band's website: www.mechanicalbirds.com. They live around the corner and since Jody found out about Adam she has been sending us fresh baked goodies on a regular basis. It's this kind of thing that is so strange about Adam's illness. I don't think we would have met them if Adam had not gotten sick. I can't wait for Adam to be finished with chemo and feeling better, and I am glad we had a chance to connect with folks like Jody and Michael. I am trying to use 'but' less. This family is so talented. Their youngest boy, Rye, plays drums in a rock duo (white stripes but smaller and the girl is on guitar, Rye on drums) and they rocked at Camille's school picnic. Michael just stopped by with some fresh baked bread and a cd of his band, which I am listening to right now.

peace

11 year old birtday sleep over recovery.

"Most folks are about as happy as they make up their minds to be." Abraham Lincoln

I work in psychiatry, so part of me knows that this quote isn't entirely factual, but part of me also knows that there is a lot of truth in it. Dealing with Adam's illness and his resulting mood etc., dealing with work or dealing with myself could all lead to the opposite of happiness. It's not hard to sink, all you have to do is stop swimming. But swimming can be fun, even though it makes you tired....it's tired in a good way. Times are tough all over but I notice that when I choose to express myself in pleasant ways, not over react, be gentle, even if I have to fake it, this has a real effect on my own mood. I could probably use an anti-depressant from time to time but honestly I just need to buck up. Fake 'til I make it, as my friend Nan would probably say. Adam is still feeling pretty bad today. That may be due to the antibiotics more than the recent chemo. Work is a mf'er sometimes. But this morning as I was walking from my car into the hospital I decided to be happy. Good thing too because lots of stuff has been thrown my way today....but it ain't stickin.

People I appreciate today: Martha, Marie, Stephanie, Jay W., Sara Grace, Mark, Yvette, Nan and Dr. Sastry.

picnic

Camille's school picnic was yesterday. It rained and shined and rained and shined all day....but ended up being a great day for a school picnic. This school was also Adam's preschool so we were hoping that Adam would join us despite the fact that he only got out of inpatient the day before. Surprisingly Adam was in a good mood yesterday and also seemed relatively full of energy. He went with us and I am very glad he did. We hardly saw him at the picnic. He was hanging around other kids, playing on the playground, and generally living the life of an 11 yr old.
We had a great time too. Sometimes these picnics are a little stiff but this was exceptionally fun. Got to hang with my friend Michael and made a new friend, also named Michael. The new Michael is a professional musician and told me that as I learn geetar he will help me tune up and show me some pointers any time. Cool guy!

Today Adam went to work with Martha and promptly threw up. That doesn't take anything away from yesterday and he is actually doing ok now but only shows how unpredictable his feeling good moments are. Nothing is taken for granted.

Have a great week.

memory

Adam returned home a little after 6pm yesterday. He had mostly slept all day at the hospital and continued to sleep here until this morning. I think the anti-nausea medicine makes him sleepy. He is up now, watching cartoons. He says his stomach still hurts. His mood is down. We have one more inpatient chemo to go. This inpatient stay, despite being one full day late, was the least traumatic. Adam still had to work through pain and nausea, but he slept more and the pain seemed less intense than the last stay. We also had the best nurse, Rochelle, and that makes things a little easier.

While Adam was in the hospital he received two more license plates......from Paraguay. Former Jesuit Volunteer Dennis C Jr. must have told his dad, Dennis C Sr. , about Adam's collection because Dennis Sr. sent the plates. The Paraguay plates are much more 'primitive' than the US plates. I think they are hand painted and the metal is thicker and seems hand tooled. They are very cool. I am curious how Dennis and family came to have these plates.

We also received two mix home burned cds from our friend, and former JV, Tom W. Very thoughtful and very groovy music (by the way I have decided to learn to play the geetar....I ordered a cheap acoustic, a tuner and some picks....youtube has some very easy to follow lessons....I am hoping this will be another way to manage my stress.) Thanks Tom and Susie.

Another piece of good news is that we finally have a washer and dryer again and the various house projects are almost complete; just some finish carpentry and the exterior painting continues. We set out on a big house improvement project about a week and a half before hearing about Adam's diagnosis. I guess we will always associate the two things. When we are sitting on our new porch it will always remind us of the year Adam got cancer. Martha points out that Camille's first retained memories will probably revolve around Adam's treatment.

We would like to thank Regine and Todd for letting us use their washer/dryer.

Saturday morning

It's Saturday morning, 750am, and Adam is still asleep. His chemo got started earlier in the day (about 615pm) than the last two times (but still one day late). Adam complained of stomach ache but it was not as bad as the last hospitalization. He has been nauseous, throwing up one time in the middle of the night. Luckily Rochelle his nurse happened to be in the room at the time and got his pale to him in time. She also got anti nausea medicine in him very quickly. He and I were then able to sleep (mostly) the rest of the night. It could of been worse. Now we have to wait all day because he can not leave until 24 hrs after chemo begins.

fools rush in

Calmness is constructive of good. Agitation is destructive of good. I will not rush into action. I will first "be still and know that He is God." Then I will act only as God directs me through my conscience. Only trust, perfect trust in God can keep me calm when all around me are agitated. Calmness is trust in action. I will seek all things which can help me cultivate calmness. To attain material things, the world learns to attain speed. To attain spiritual things, I have to learn to attain a state of calm.from..Twenty-Four Hours a Day (quote given by Nan.....just in time)

I suppose this beautiful quote is another way of saying 'fools rush in'. It is Friday morning and I am supposed to be at the hospital with Adam. Because there was no bed available Adam was 'allowed' to go home and wait for a bed this morning. I think we will back at the Cancer Center around 11am. Waiting around at home is infinitely better than waiting around at Childrens Hospital.

Adam is feeling ok physically but you can tell that his anxiety is rising as we await this third inpatient chemo visit. When I was running this morning, trying to focus on my breathing, I kept begging God, please make this a one night-er. Please please please. Amen. Breathe breathe.

Martha's sister Mary is up here helping us. Last time my mom and dad helped out. Having that kind of family support is really terrific. Mary accompanied Martha and Adam as they waited yesterday to be admitted. She told me last night how amazed she was that we can deal with all the delay and lack of communication as we wait for a bed to open up on top of dealing with everything else. Martha had said earlier that she can't remember how she felt when we first got the news about Adam. I do but I know what she means. That feeling of shock, helplessness, anger and denial seems like a long long time ago. Now we just deal with it, with a lot of help from others. Not because we are extraordinary people but because there is no alternative. We are incredibly fortunate that we have family, friends and jobs with benefits. But we are just regular folks...no better and no worse. This week's horrible events in Burma and China really underscore that regular folks deal with catastrophe all the time; what else can they do. Mary and I argued a little about this. She insisting that she couldn't do it. Well, she could, probably has, and probably will. We all have to deal with something sooner or later.

Work has been sort of tough but I still love what I do and am fortunate to be able to say that. Folks like Susan, Mike, Shuwanna, Shelia, Jadrian, Nan and Kay (only to name a few) make the rough parts bearable but mostly it's is good work with a capital G. Without going into boring detail I can say that he last couple of weeks have been hard. Taking a step back I think this has to do with the economy tanking and the fact that I have chosen to work in a tough field. So I won't complain. I am thankful for what I am able to do. I appreciate it when I fail or make a mistake and am able to take action(when I am able to reflect). I need to learn to not over react or over respond to 'bad news'. This happened yesterday and luckily Nan was there to see it and give some great advice summed up in the quote above. Thank you Nan.

And the Oscar goes to.......

Last night we were watching a movie; Martha, Adam, Camille and myself. Out of no where Camille starts retching. She's coughing, making choking sounds. Sounds like she's gagging. She says she is going to throw up. Initially Martha and I were both rattled. Maybe she had swallowed a puzzle piece or a lego. We took her to the bathroom and stood by her at the sink. She continue to make a lot of retching sounds. But she is also looking at herself in the mirror. And she is not throwing up and does not appear to be in any pain. That was when Martha and I realized we were in the midst of a class A performance. Meryl Streep would have been proud. Camille went on that she wasn't sure if she could go to school tomorrow and oh by the way could she sleep with us tonight. Very clever indeed.

Martha and I realized that we should be on the look out for a little acting out on Camille's part. We have tried very hard to show her love and attention, but inevitably Adam is getting most of that right now. I thought though that Camille's behavioral attention seeking would be a little more subtle and not the full blown thespian put on of last night. It was hilarious and we had to muffle our guffaws. This morning Camille continued that she wasn't' sure if she should go to school and maybe she should take the square bucket in case she threw up. Martha assured her that she was OK and told her how much we loved that she was healthy and happy. We'll see what the next act brings.

We met with Dr. Tenenholtz today and, just like our first visit, he was very communicative and positive while at the same time laying out the possible side effects of radiation therapy. Short term effects include dry eye, hair loss around the eye--lash and brow, skin irritation, sun sensitivity and possibly but unlikely a lacerated cornea (from a malformed eye lash). Long term effects include permanent dry eye, sun sensitivity, cataracts, and soft muscle tumors around the eye. Dr. T emphasized that the worst of these side effects are rare but still need to be taken into consideration. Adam also got another CT scan and had a fitting for the mask he will wear when getting the treatments. The radiation therapist said he was her best patient! Radiation starts at the end of June after he gets back from Camp Horizon.

Tomorrow Adam goes back for his third inpatient chemo. Aargh. Just keep repeating, chemo is our friend, chemo is our friend......

1st Boy Scout meeting

Adam went to his first real Boy Scout meeting last night. The leader, Mr. Gregory, told us when we came to pick him up that they 'start on time at 7pm and end on time at 830pm, and he would be ready to be picked up.' We were 30 minutes early, oops. Boy Scouts is different from Cub Scouts. Much less parental interaction. Which is cool. There is also greater expectation that Adam will be in uniform, including issue socks and pants, and that he will demonstrate proper respect, etc. This is just what Adam needs now. Perhaps one of the worse things about cancer is the social isolation. Adam can't go to school and has had to drop out of soccer. He is lonely and needs more than mom and dad can offer. I hope that he can go to the meeting next Monday even though it is usually not a good day (being the Monday after inpatient chemo).

We have a visit tomorrow with Dr. Tennenholtz, the radiation oncologist. Adam's radiation treatment will start in late June. The good news is that after this Thursday and Friday he only has one more inpatient chemo and we hope this means he will be feeling better over all. The bad news is the radiation is a big unknown. Dr. T did a good job describing the potential side effects and in being positive but there are still many unknowns.

Adam received some more gifts yesterday. Another of Ward II's friends, Bob P., sent Adam a New Jersey plate and a penny from 1804. Very cool. I think the penny must be for luck.

A good frined of mine at work, a friend who has been very supportive during this time and many times in the past, had chest pains yesterday and had to be admitted. She is having cardio stress tests this morning. I don't think this person would want me to broadcast this news so I will not say the name but please say a prayer anyway.


peace

rhizome

Ward II has sent out the word on Adam and his collection (his buddy Ned responded and I hear we are about to get some more plates from other Ward friends). Jody, a teacher at Camille's Montessori school and a neighbor, has told her journalist father about Adam and he in turn has told many of his far flung journalist friends. My sister in law Jeannette has told her friend, Fr. Francis, who is a missionary in Taiwan, and he sent Adam a spiritual care package, a very supportive note, a 'iconic' image of Jesus, Mary and Joseph and a picture of he and his Taiwanese school children (very cute). Support for Adam is like a rhizome....spreading across the planet. My friend Anton, who lives in the Philippines and traveled to Viet Nam, Laos and Cambodia sent us a email on his trip because he wanted to make sure we got a email from that part of the world.

Adam had a sleep over last night. The boys are still here munching on donuts and playing a few more rounds on the wii. Based on my own exhaustion it was a success. Good thing birthdays only happen once a year!


HAPPY MOTHERS DAY!

Mother's Day: A wiki history

The United States celebrates Mother's Day on the second Sunday in May. In the United States, Mother's Day was loosely inspired by the British day and was imported by social activist Julia Ward Howe after the American Civil War. However, it was intended as a call to unite women against war. In 1870, she wrote the Mother's Day Proclamation as a call for peace and disarmament. Howe failed in her attempt to get formal recognition of a Mother's Day for Peace. Her idea was influenced by Ann Jarvis, a young Appalachian homemaker who, starting in 1858, had attempted to improve sanitation through what she called Mothers' Work Days. She organized women throughout the Civil War to work for better sanitary conditions for both sides, and in 1868 she began work to reconcile Union and Confederate neighbors.
When Jarvis died in 1907, her daughter, named Anna Jarvis, started the crusade to found a memorial day for women. The first such Mother's Day was celebrated in Grafton, West Virginia, on 10 May 1908, in the church where the elder Ann Jarvis had taught Sunday School. Originally the Andrews Methodist Episcopal Church, this building is now the International Mother's Day Shrine (a National Historic Landmark). From there, the custom caught on — spreading eventually to 45 states. The holiday was declared officially by some states beginning in 1912. In 1914 President Woodrow Wilson declared the first national Mother's Day, as a day for American citizens to show the flag in honor of those mothers whose sons had died in war.
Nine years after the first official Mother's Day, commercialization of the U.S. holiday became so rampant that Anna Jarvis herself became a major opponent of what the holiday had become. Mother's Day continues to this day to be one of the most commercially successful U.S. occasions. According to the National Restaurant Association, Mother's Day is now the most popular day of the year to dine out at a restaurant in the United States.

saturday morning at the Y

21 states so far.
Peace/Victory
Getting ready.
Action.
More action. Big Blue Wins!

here comes the weekend

Yeah, all those things, responsibility, pressure. It's a bit stressful. I try and come to terms with it by not thinking about it. --Joe Strummer



It's been a pretty good week at home, Adam has been feeling mostly healthy, but an unholy pressure cooker at work. I am not sure I am cutout for the corporate life. I am glad the weekend is here. Tonight Adam is having a birthday sleep over. Five 11 year old boys spending the night, please pray for us. Adam's red cell blood count is a little down and he is slightly fatigued, but he really wants his sleep over so I told him he needed to be friendly and engaged with his friends. He will have to buck up a little. He readily agreed. We'll see.

Tomorrow is Mother's Day. I think this year Martha has been the mother of mothers. I don't expect Adam and Camille to appreciate that right now, but one day they will realize what a fantastic mom they have. I have a pretty fantastic one too (Happy Mother's Day Juju!)

Our friends and family continue to be so thoughtful and generous. Thank you Mark (the shark) for the plates. Adam's collection is coming along beautifully. Thank you Lucy and Jay for the jigsaw puzzle. That puzzle really helped Adam get out of his funk last Sunday. He didn't stop working on it until it was finished. Thank you Jay for the cd....my main form of stress mgt these days is either quiet solitude on the way to and from work, or blasting the stereo to and from work. Thank god for the commute! Thank you Mary, Carson and Cecile for your frequent comments on the blog. Thanks Mom and Dad for figuring out how to make comments on the blog.....we read them all. Thanks Jeannette for your unfailing positivity. Thanks Dan for your email........the Waits video is great (see link below). Thanks John and Julia for feeding us last night. The wine was pretty good too. Thanks Susan for keeping me sane at work. Thanks Kay (my boss) for letting me see more of the whole you....you are hilarious! Thanks Martha's workmates, and Anna, for all the dinners. And thanks to the Amercian Cancer Society for providing Camp Horizon. Adam is all signed up. I know I am forgetting. Please forgive me.




http://www.youtube.com/watch?v=EOrG1r3S6ZA&eurl=http://beat.bodoglife.com/entertainment/tom-waits-announces-tour-96813.html

keeping faith

Adam is working on his erector set that Grandma sent him. He's kind of a geek for these things, which is great actually, now I have to go get on to him to go to bed.

An old and dear friend emailed us today. It's funny how you may have friends that you rarely see or even talk to but they remain your very good friends. Simpatico. He said he and his wife have been following this open letter and it has cheered them up a little. Her good friend has cancer and has withdrawn from the world. Adam is not alone, and by god we would not let him withdraw. The Vandy social worker told me today that some kids refuse to even leave their room while going through treatment. I'm not sure how I would respond if I was diagnosed. I know I have learned that there just ain't no way to do this, deal with it, alone. But I also have learned, am learning, that Adam can be a little shit some times. And I have to be patient with that. It's ok. His mood grows dark, he gets mean, and it's like a wave that washes over all of us. Martha and I bicker more at each other. Our patience for Camille diminishes. But we have to maintain. We have to see through those times. There is a little boy down the street. This kid worships Adam, the way little boys do. He constantly wants to hang out. Some times Adam is ok with that, plays with him, sometimes Adam can be down right rude. But this little boy keeps coming over. We worry that Adam may be pushing away people that care about him. And he does. But they keep coming back. Antonio, JP, Finn.....I guess that is love.

My prayer tonight is that all those who have felt pushed away by their friends or those they love who are suffering from cancer, depression, whatever don't give up, don't quit on their friend. This may be the time to reach out again and if that fails, reach again...

bouncing back

Adam has had a string of good days in a row. Today he is back for his weekly outpt chemo and we hope to keep on truckin'. I had an email conversation with the Cancer Center social worker, Cindy. I was conveying some of my concerns about Adam's mood, fatigue and dropping energy level after his last inpatient stay. She asked if Adam was staying in contact with his friends and getting out of the house when he felt up to it. I told her that after the 'nadir' of his white cell blood count he seemed to bounce back. I had emailed her because I was worried that Adam may be dealing with depression, in addition to everything else. Cindy assured me that not only was Adam's fatigue and moodiness to be expected but based on my answers to her questions Adam was doing better than expected. Needless to say, this is relieving.

Cindy was also very happy that we are taking advantage of Camp Horizon. Apparently the Camp is so good that kids continue to want to go even after their cancer has been in remission. She also assures me that there will be a kids support group starting soon at Gilda's Club. This is good to know and Adam, I think, would benefit.

Martha has been doing the lions share and more of daily caring for Adam. This is becoming more challenging as she still has big responsibilities at work. I am going to try to contribute a little more on this front. I think during these upswings in Adam's mood and health he can stay home by himself and I can come home to have lunch with him, make sure he is not destroying the house and encourage him to get his school work done. I think we can make this work.

Adam has been honored by his cousin, and Godparent, Eddie. He is being asked to be the ring bearer at Eddie's wedding in August. The wedding is going to be in Memphis. Talk about HOT. That is very cool and I think Adam will look smashing in a tux!

I was right to be optimistic yesterday. Adam has had a couple of really good days. His mood has turned the corner. I realize we will be going through the same pattern after the next inpatient chemo but the flip side of that is that there are only two more inpatient chemo sessions left. That means that the summer may actually be fun for Adam. He will start it with Camp Horizon and end it with a vacation on the coast. Adam goes to his first Boy Scout meeting next Monday. His homebound schooling is hopping along. The immediate future looks good. Again I say thank you to all who have been sending your good wishes, prayers, vibes, energy.....from near and far. Even Taiwan. More on that later.

Dig the plate wall art. We have receive a lot more than this but are keeping it to one plate per state. So now you know which ones we need :)

Ned in Maine

I had to make a marketing trip today. The census at Skyline is a little low so I had planned to visit several therapists and doctors in their offices in Wilson and Rutherford counties. Just trying to drum up some business. I thought this would be a hassle but it turned out to be very therapeutic. The drive was really relaxing. The air is a little cool and dry, and the day was beautiful. I had the windows down and the stereo cranked (REM's new cd accelerate).

The drive from outside of Mt. Juliet to I-840 (which takes you to Murfreesboro) was particularly spectacular in a 'I forgot that the Tennessee countryside could be so pastoral and charming' sort of way.

I made all my contacts in Mt. Juliet and Murfreesboro and then got back on the road to Lebanon. Not quite as nice but still a straight away two lane with not too much traffic.

I was wondering how Adam was doing. I was optimistic because last night his mood finally started to lift and as Martha has said before, 'my Adam' was coming back. He was friendly and funny and interested, very interested, in this jigsaw puzzle that aunt Lucy and uncle Jay gave him. The puzzle fittingly depicts the USA... in license plates. Adam is working on it as I write.

Speaking of plates. My second cousin, Ward II, got the word out to his friends about Adam's collection. In the mail today from Ward's old highschool friend (class of '52) Ned W. in Maine, were four old school, prison made possibly, Maine and Maryland plates. Very cool. We just figured out how to mount the plates on the wall in the the kids play room. Just in time as they are really piling up. Keep sending! You just never know how folks are going to respond. Juju told me that her faith in humanity has been restored by seeing how folks have responded to Adam. It really is beautiful. Thanks Ned!

fortress of solitude

What a beautiful weekend this has been. Yesterday Nashville started a little cold and wet but then opened into a sunny, slightly cool, day. Today has continued the cool but sunny theme. Really nice.

Yesterday I took Adam and his friend JP to see IRON MAN. Very entertaining. For those who are geeks for superhero movies, this one is a welcome relief from the overly serious but still really good Batman Begins and Spider Man movies. Robert Downy Jr. does a great job with the character.

Adam had a good time I think but he is at the 'nadir' of his white blood cell count and that usually means he is quick to fatigue and his mood can get down earlier in the day. I lit a candle today at church (talk about old school) not for Adam's physical health, as much for his mental, emotional and spiritual health. I know that in reality all these 'healths' are completely intertwined, inseparable, but I now believe (with help from Laura F.) that Adam's physical health is in good hands and I have been neglecting the other aspects of his well being. So the candle was for an increase in his serotonin levels, his good cheer and his lovable qualities (which have never left but have been a little defeated from time to time). On the other hand even Superman had his 'Fortress of Solitude' and maybe Adam's moodiness is exactly what it should be given where he is at in treatment. I don't know.

In the church bulletin today was this poem-prayer by Hildegard of Bingen. I think it speaks to the inseparable nature of body, soul, emotions, spirit, creation. In short what God creates is good. Check it out.

As the Creator loves his creation,

so Creation loves the Creator.

Creation, of course, was fashioned to be adorned,

to be showered, to be gifted with the love of the Creator.

The entire world has been embraced by this kiss.

God has gifted Creation with everything that is necessary.

God's Word is in all Creation, visible and invisible.

The Word is living, being, spirit all verdant greening,

all creativity...

This Word manifest in every creature...

Now this is how spirit is in the flesh--the Word is indivisible

from God.

Hildegard of Bingen

Adam has received so many tokens of support. These plates and cards are just a sample. Sorry for the side ways view of the plates.

Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.

--Helen Keller

I'm bald.........so

Why we love Adam's friend Antonio:

(over heard at Pizza Perfect on Adam's birthday)
Adam: 'I'm bald.'

Antonio: 'So.'


Yesterday was Adam's weekly chemo office visit. Normally this only takes about 30 minutes. This time because Dr. Kuttesch was out, his partner, Dr. Collier was seeing all the patients. Adam and Martha were at the Center from about 10am to 1pm. But the wait was worth it as Dr. Collier is a bit more communicative and willing to speculate a little. (This is not a critique of Dr. K. He is one of the best in his field and we feel very fortunate to have him as Adam's doctor.) Martha asked if it was possible that once the inpatient chemo treatments are complete will Adam generally be feeling better. He seems to gradually do well a few days past these treatments so the question was certainly sensible. Dr. Collier, like Dr. K, emphasized that all patients are different so virtually nothing can be predicted with certainty. But unlike Dr. K, Collier was willing to say that it was possible and that other patients with Adam's profile had generally done better once of the 'ditoxan' regimen, which is the 'bad' chemo medicine Adam gets when he goes inpt, was complete. Adam has had two ditoxan treatments; he has two more coming.

Martha also found out more about Camp Horizon. I had heard about it a little from Gilda's Club. This is a camp for kids who have or have had cancer. Adam can not miss any of his chemo appointments but this camp is happening during Adam's chemo holiday in June. We are signing him up. It's a 'spend the night' camp and is for one week. We had to cancel Adam's YMCA camp and Camp Beckwith sessions due to his treatment. Adam has always loved camp, whether day or over night, so we are taking advantage of this free service provided by the American Cancer Society. The camp is located in Kingston Springs, Tn. I remember being so shocked at the first appointment with Kuttesch and almost sick to my stomach when Cindy the social worker told us that there were special camps available for children with cancer. 'That's not for my kid' is what I was thinking. What a difference 6 weeks can make. Now we think it's a great idea. Adam will love it. Heck, maybe he will be a counselor there in a few years.

I have blasted chemo treatment before. It looks and feels like torture sometimes, especially when my son is crying 'I just want to go home', as he holds his stomach in pain. One of my sister's oldest and best friends, Laura, who grew up across the street from us in Atlanta, sent us a lovely and pertinent note attached to a jar of delicious cookies for Adam. Laura is a cancer survivor. She is three years out from completing her own chemo and is cancer free. Two more years and I guess she will be considered 'in remission.' Laura's note was very supportive, hopeful and uplifting. She says "you must see chemo as your friend....where would we be without it?" Well that cuts through all my own self pity. She also says this may be hard for a 1o year old to understand but maybe it will help you. Well, it does. Chemo is part of Adam's treatment. The treatment he is getting is going to save his life. The treatment he is getting is the best, the most advanced, form of treatment available for the type of cancer he has. And just as I or Martha had to hold Adam when he got his shots as a baby, we will have to hold Adam when he is in pain from this life saving chemo. And thank God that we have this treatment.

We also received a note from our old Jesuit Volunteer Corp friend Dennis. Dennis is an actual Buddhist. He ain't just reading about it, he has been living it since the early 90s. I am not sure if Dennis has email or even a computer. He said he had heard through the JVC grapevine about Adam and was writing us to tell us his concern and to let us know he will be thinking about us and Adam as he prays and meditates. I want to send out a special appreciation to all my old JVC comrades. I know you are praying, meditating and thinking of us and Adam. I know your good wishes and concern count and are paying off. We have a little less than 5 months left, we are in the beginning of this tunnel, but we can see the light.

Happy 2nd Birthday cousin Scott!

Cubscout Crossover

Waitng for the fire to cool down to retrieve the flag rivets. Adam only looks like he is praying.

Very reverent indeed. Much thanks to Rob G. for all his work with Webelos 210!