Wednesday, July 30, 2008

“I'm not a preacher, and I'm certainly not a good example, but I have my own feelings about God. I'm kind of a nature guy. My cathedral is forests, or the prairies, or the beach.”

---Neil Young

Kids, what kids?

5 more sessions to go. We are going to try and convince the doc to let Adam have his last session on Friday before Labor Day so that we can enjoy more time down at Dauphin Island with the folks.

Reports from New Orleans relay that Adam and Camille are fine and not asking about us. Which is a good sign.

Tomorrow Martha and I head over to Memphis. Adam and Camille are driving with Fred, Dee and Peter. We are looking forward to Eddie's wedding. Should be a blast.

Monday, July 28, 2008

Ok


So Adam and Camille are off on their flight to New Orleans. Camille walked right onto the plane with her big brother. No problems. I am not sure she would have done it on her own but there was no way she was going to let her brother show her up. I think Adam is looking forward to spending time with his cousins, especially Sam, Olivia and Peter. We've always joked that Adam has no problem leaving us to stay with others and we've never denied that we love foisting our children on others.....thank you Mary and Ben, Fred and Dee.


Adam got back from his weekend canoe trip with the scouts yesterday. A little tired but apparently none worse for wear. He had a good time. He had his chemo today and I think that makes 5 more to go. And here we go.
Adam starts back to school in just two weeks. And so does Camille. She will be entering kindergarten and may be taking the bus to school.


Adam's hair is growing back but his left eye is naked and may be for some time.
If you happen to be in the Mobile, Fairhope, Dauphin Island area at Labor Day please know that if you have been praying for, supporting, wishing good wishes, meditating, sending good vibes or plates to/for Adam you are invited to a Thank You Thank You Thank You party.
We are approaching the end of the beginning. Adam will continue to have frequent visits to the Childrens Hospital Cancer clinic, he will have to worry about side effects for the rest of his life, he may never be able to get decent insurance. But the end to this chapter is in sight. What does it mean? This thought enters my head daily. And daily I have a knew question. I believe in God. But I have no idea what God's plan is or if Adam figures into that. If you asked me right now I would say that there is no meaning in Adam's cancer. None, zip. People say that there are no coincidences or that there is a reason for all that happens. I am not bitter, I think Adam may be better for going through this, I think we may be better, but I think the thought that this has innate meaning is bullshit. We make our own meaning. And I don't think this was in some creator's plan. It is what it is.....as the current favorite saying goes. No reason. This accident gives us, Adam, a chance to respond gracefully, or not, or some where between gracefulness and desperation. That's where I have been. Some times I have tricked myself into thinking that even your own kid's chemo can become routine. And at times it has on the surface. Work has been busy, I have not been able to attend all the appointments, sometimes at work I can even forget for a moment that I have a sick kid. But as soon as I let it come back I am scared shitless and crying. I have put a positive spin on Adam's handling of this, a reframe if you will, of his indurance of treatment. He has been a champion. But he is only human. Fragile and human. We are on track I think but being on track means that we can always be knocked off track.
What does it all mean?

Sunday, July 27, 2008

Camille Rides !

Camille was excited all week about her birthday party with the live ponies. When the time came, the ponies had arrived, she promptly refused to ride. Luckily, after a little coaxing and watching all her friends have fun, she relented.

It was a great party. Luckily the weather held out; not too hot, a little muggy, overcast but no rain.





Friday, July 25, 2008

Friday

Adam has had a pretty good week. We quietly celebrated the last of his radiation treatments on Monday. He was a very good brother for Camille's birthday. Today he leaves at 7pm for a boyscout canoe trip. He will be gone until Sunday.

We received an old, bullet holed, Vermont plate today from Bill and Betsy. Bill and Betsy are related to Adam's aunt Mary's husband. They are from Vermont. Bullet holed? I didn't think they allowed that sort of thing in Vermont :)

Adam has finished his summer reading assignments and is now trying to complete the project he is supposed to complete based on the reading. Trying means that Mom and Dad threaten and Adam reluctantly does. In other words, situation normal.


Have a great weekend.

Thursday, July 24, 2008

When Camille records her first rock record this will be the cover photo....She Rocks!
That's one happy girl.

Camille turns the big 05.

brilliant!

Martha had a moment of brilliance. Adam and Camille are going to fly down to New Orleans together but without Mom and Dad (a first for Camille, Adam is a pro) to spend some time with cousins, aunts, uncles and grandma. Then they will drive up to Memphis next Thursday for our nephew's wedding (Eddie). This will give us some totally kid free time and Adam and Camille will have a ball with the New Orleans crowd.

Adam will be the ring bearer for Eddie's wedding and he has been fitted out for a very suave tux. Will post the pics on the blog.

Camille had a good birthday with just family. Got a lot of girly things including a Barbie party van with a hot tub and a little bottle of champagne (not really). Adam liked the B-van as much as Camille...but don't tell anybody. She also got one of those Barbie heads (kind of freaky) and she got a Hannah Montana guitar. And a lot of other cool stuff.

Camille's real party is Saturday. We have two ponies coming to the house for 26 kids between the ages of 2 and 6! Please pray for us.....

peace.

Tuesday, July 22, 2008

Camille is 5!

Camille was born 5 years ago today. She was a little early due to a low pressure system moving through Nashville. In honor of that we named her Camille after the huge hurricane that hit the Gulf Coast in the 60s. The day before she was actually born we met our good friend John who was house sitting next door and had to come over to ask if he could use our phone because his was out due to the storm. Our long time contractor and friend Mel was also over working on our upstairs build out. A tree on our property was blown down less than 6 inches from our new neighbor's (at the time) new Land Rover. All of this was going on when Martha woke up from a nap and said it was time to go to the hospital two weeks too soon; the next morning we welcomed Camille.

So she came in like the storm she was named after but has been nothing but pure joy (mostly) since.

HAPPY BIRTHDAY CAMILLE! We Love You!

Sunday, July 20, 2008

"THANK YOU"

I listen to a lot of music. When I heard this song recently while driving back from Chattanooga I literally cried. Here is the opening verse but please check out the song. No irony, all sincerity.


You've been so kind and generous
I don't know why you keep on giving
For your kindness I'm in debt to you
For your selflessness--my admiration
For everything you've done
You know I'm bound--I'm bound to thank you for it

--natalie merchant

Saturday, July 19, 2008

saturday in the park

My old JVC friend Kevin and his wife Pam are dealing with a serious illness in their middle son Joe. He has a form of meningitis. Please keep their family in your thoughts and prayers.


I took Adam to see Dark Knight yesterday after work. Very intense for a movie based on a comic book. It must be good because I keep on thinking about it but it is not really a 'feel good' movie if you know what I mean.

Adam and 3 of his friends plus Camille spent the day at Centennial Park today for a Nickelodeon event. Adam loves all things Nickelodeon. I accompanied them but kept my distance and let the boys entertain themselves. Jeez was it hot but it was great watching Adam have a pure good time with his friends. But jeez was it hot.

My cousin Laura and her husband Mark are joining us for dinner out tonight. Will be nice to have an even of adult discussion.


peace

Friday, July 18, 2008


sing it neil

I Am A Child
by Neil Young


I am a child,
I'll last a while.
You can't conceiveof the
pleasure in my smile.
You hold my hand,rough up my hair,
It's lots of fun to have you there.

God gave to you,
now, you give to me,
I'd like to know what you learned.

The sky is blueand so is the sea.
What is the color,when black is burned?
What is the color?

You are a man, you understand.
You pick me upand you lay me down again.
You make the rules,you say what's fair,
It's lots of fun to have you there.

God gave to you,
now, you give to me,
I'd like to knowwhat you learned.

The sky is blueand so is the sea.
What is the color,when black is burned?
What is the color?

I am a child, I'll last a while.
You can't conceiveof the
pleasure in my smile.

Thursday, July 17, 2008

party at our house

Only two more radiation sessions left. This is good because radiation really seems to have a fatiguing effect on Adam. He gets tired very quickly in the day. His staying up reading late into the night might also have something to do with it.....but what am I supposed to do, tell my son not to read? He just finished the last Harry Potter book and he stayed up two nights ago to finish a book called Charlie Bone (I think). His mood has been ok and he has been nicer to the little kids down the street but you can tell that his energy is just not there.

His head has more fuzz on it but his left eye brow and lashes are gone. The skin around his left eye is red, like sun burn. He claims his eye really isn't bothering him but the eye doctor put him on drops anyway. He has been very good about allowing us to administer the milky white eye drops without a fuss.

At work we had a 5 year old die in the ER. A few weeks ago the ER staff saved a one year old after he had been clinically dead. He had fallen down a well head first. They performed CPR on both kids for over an hour and a half. ER folks are tough, but not that tough. Some of our staff have been asked to provide some trauma debriefing for the ER workers. All this made me think of Adam of course. And how fortunate we are. Our boy is safe. Tired, bald, damned sick of chemo and some times lonely, but safe. One of the folks so affected by the recent child deaths was the Chief Nursing Officer at Skyline. After we talked about taking care of her staff she pulled me aside to ask if it was ok to ask about Adam. She told me that many folks have felt it may not be 'appropriate' to ask. I was surprised. First of all, I felt as if so many people at work have asked and been so supportive and secondly, I really have no sensitivity about being asked. I like talking about Adam and his recovery. I guess it may have been different if things weren't going as well as they are so I can understand the trepidation folks may feel now that I think about it. I told the CNO about Adam's progress and our excitement that we are in the home stretch of treatment. The CNO is a tough lady but you can tell that kids, especially sick kids, get to her. She had already been crying about what happened in the ER and started tearing up again as we discussed Adam. We finished talking and I told her how much I appreciated her asking and please feel free to ask again.

We have 8 more state plates to go. Starke and Anne, my uncle and aunt, sent Adam a Kansas plate and a book about 'Cool Stuff' that Adam has already checked out thoroughly. The plate wall is more than a wall of state license plates. In the end, who cares about state license plates. The wall represent love pure and simple. I hope that one day Adam will look at the plates and have a realization about what it meant for people to send these to him. Folks who know him, love him and folks who haven't even met him have sent these plates in. Some have scoured yard sales, attacks, garages; some have given plates that clearly had some meaning for their own family history. Each plate has its own story. We've tried to keep up. Martha has written the details on the back of each plate in black permanent marker.

I wrote at the beginning of all this that I would have a huge debt of gratitude to pay out. Now that we approach what I think (hope and pray) will be the successful end of Adam's treatment I need to think about how I can repay or pay forward what we have received. I would say "Party at Our house and you are all invited" but what about all the folks from Alaska to Texas to Main to the Philippines to Taiwan who have shown such great support?

Sunday, July 13, 2008

update Sunday

Friday I took the morning off so that I could take Adam to his daily radiation treatment. It's at 9am Monday through Friday. 9am sharp. We were in and out of there in less than 15 minutes. Then I took Adam to work with me. Adam got to briefly meet the COO and the HR director. I think he was a little bewildered that these folks seemed to know Adam. He is somewhat famous at work. I was hoping that I could do some work, make some rounds, get seen and then sneak out and take Adam to a movie or something. To my own chagrin Adam's eye doctor, Dr. Mawn, wanted Adam to be examined since we are 3/4s through his treatment. She wanted him to be seen at 1pm so after a couple of hours at work I didn't have to play hooky because I really did have to take Adam to the appt.

We were seen by Dr. Armstrong. I think he is one of Dr. Mawn's residents. Nice guy, pretty good with Adam. Dr. Armstrong, after examining Adam's eye, says that there is some dry eye and inflammation caused by the radiation. He also checked out Adam's internal eye pressure and found no problems. I asked about cataracts. Dr. Armstrong says that it's a possibility but not likely for a few years. Basically he says that radiation speeds up the aging of the lens. Adam may have some problems in his late 20s or 30s as opposed to his 50s or 60s. Fair enough.

Adam has another appt with Dr. Mawn on Monday; in between his radiation and chemo appts on the same day.

While we were driving back to Vandy for the eye appt Adam looked at me and said out of the blue, "I hate chemo..." I said "You only have 7 treatments left." He said, "You know why I hate chemo?" I was very interested in why. I could think of a thousand reasons but he was about to tell me his. "Because I haven't been able to do anything all summer." Adam said this without a hint of self pity. He was matter of fact. I still remember all the pain Adam was in during his inpt chemo trips. I remember his stomach aches and feeling bad at home. I remember him having to wait and wait at the chemo clinic. But he hates chemo because it has taken away what he likes best about the summer. I told Adam that we will make up for what he lost out on next summer. Summer 09 will be the Summer of Summers for Adam.

So we saw Dr. Armstrong, went to the pharmacy to get some special eye drops that should help with the swelling and irritation and then went to see Hellboy II....which was very cool. We laughed a lot.

Yesterday, Saturday, Martha, Adam and I went to Birmingham a day before we were supposed to meet Juju and Bear to pick up Camille from her week with Carson and David in Kanuga. Martha thought it would be good to go and hang out at "Alabama Adventure" amusement/water park. We had a good time. A couple of hours into it and the skies opened up, lightening and thunder. They closed the rides and we found our way to the park 'Tavern'. A fully stocked bar......no kidding. We sat and watched the storm and had a couple of beers. It was nice, reminded us of living in New Orleans. Then we went to the water park and Adam had a great time on the slides, the 'lazy' river and wave pool.

This morning we met Juju and Bear with Camille and Kira. Jared and Heather and Scott were there too. Had a nice lunch and got back on the road. Reunited with Camille. She almost immediately passed out asleep. I think she had a great week at Kanuga and could probably use the rest.

Thursday, July 10, 2008

Make a Wish

We received a visit last night from the Make a Wish Foundation http://www.wish.org/. Two volunteers interviewed us and Adam, mostly Adam, about his likes and wishes (of course). They asked Adam what he would like to do. His first wish is to go on a Nickelodeon Cruise. They asked what his alternative would be if the first doesn't work out. He wished to go to Hawaii. Way to go Adam! The volunteers said that the cruise may involve going to international ports of call and that is against the Wish rules but that Hawaii was definitely do-able. We will find out if Adam's first wish is grant-able pretty soon. But his second isn't too bad either.

Adam was obviously excited, but still acting the 11 year old boy. Complaining about all the questions.....he got a little "Adam, sit up" form both mom and dad. The volunteers were very nice. Once the 'itinerary' has been established the volunteers will take Adam (and us) out for pizza or whatever he wants and let him know which wish was granted.

He has 7 more radiation treatments and 7 more chemo treatments. School starts pretty early next month. His 6th grade (yeah, 6th grad, can you believe it) orientation is on August 6th. He will not be finished with chemo until the end of August but we think he will be able and ready to be back in school.

Monday, July 7, 2008

noblesse oblige

I heard an awful story the other day. A friend of mine who is a social worker as well works at Our Kids in Nashville. Our Kids is a nonprofit that assists in investigating sexual abuse of children. It does great work. I am not sure I could handle it. My friend Lisa told me that she knows the social worker at Vandy Children's who has been available to us. We haven't needed her a whole lot but she has been helpful. Cindy is her name. Cindy told Lisa that a father of a terminal child patient had been sexually abusing her. When Lisa told me this I thought how could a human being be any lower. What a monster! And he is. I think Lisa told me he has been convicted and is serving time. Not sure. After the shock wore off I began to think a little more about it. This guy is a monster. No doubt, but not because his kid has cancer. He is a monster because he is sexually abusing her. Period. Maybe when he heard about her diagnosis he tried to get it together. Maybe he told himself that he would finally stop hurting his little girl. Probably for a while he was getting a lot of sympathy from others for being strong, for being such a good dad to care for his sick child. But it all comes out in the wash. We are what we are. Cancer in your child does not make you noble. It does not make you a better parent. You are what you are. If you were hurting your child before she got cancer, you will hurt your child when she has cancer. Period.
I was not the father of the year before Adam got sick. I am not the father of the year now. I'm a good dad I think. I try. I could try harder. I can be selfish, trivial, I can take the easy way out, I probably don't challenge Adam enough, I should take him on more camping or fishing trips. I am what I am. If I were an addict or whatever before Adam got diagnosed I wouldn't magically stop being that thing afterwards. Cancer in Adam has not made me better at fatherhood. I am sorry to say that. I wish I could claim the mantle of 'Best Dad in the World' but in the end I think I am a 'good enough' dad. I think Adam will have a relationship me when I am old. I think he respects me. I think he knows he is loved. I think I set a modest example. But I could be better.
I know I am telling a horrible story. But I think about this a lot. Cancer has become part of our life. Day in and day out. It is stressful, but manageable. I am trying. But I could do better. I am what I am.

HAPPY BIRTHDAY JARED!

Sunday, July 6, 2008

abounding joy

Camille is away, over in South Carolina with my cousin Carson and her family at Kanuga. Carson emailed that the trip to Kanuga had gone well and that Camille was maybe a little overwhelmed with all the folks she doesn't know. Believe me, it won't take long before Camille is loving it. Any time she is in front of an audience that little girl is happy.

Adam spent the night with his friend Antonio last night. They slept on Antonio's grandmother's house boat. Finishing off a great summery week for Adam despite everything. Adam's younger friend foster just popped by asking if Adam could come over. I told him certainly Adam could once he got back from Antonio's.

Martha is at the gym and I just got back from a gnarly run. Now I am sitting here typing, sweating and listening to an Ipod that I loaded with summertime music....you know songs like 'Saturday in the Park' by Chicago and 'Either way' by Wilco. I feel good. It's a beautiful day. I love my kids, I love my wife and we have great neighbors, and I have very generous cousins and other family members. God damn, I am just happy today. I didn't even take my celexa yet!

I made that ipod play list for a party I had last week. The party was for my work staff. Great people. The party was my way of saying thanks for their hard work and it was a way of saying 'hang in there' despite the tough times at work. The party was a success I think. People seemed to enjoy themselves. You never know with those types of parties. They can be a little stiff. This party seemed to have a lot of spontaneity and joy.

Adam has 8 chemo treatments left and two weeks left of radiation. Then he will get another round of imaging and other testing to make sure the cancer is gone. Then at some point he will have his port-o-cath removed. His hair is growing back, but slowly.

We are getting close to finishing the State license project. Folks from near and far continue to show their support. My cousin Celia F's friend from Montana just sent a plate. My dad's Toast Master pal just sent an England plate. My sister in law Cathy found several very cool and very old plates at a garage sale in Connecticut. One of those was from the 1920s!

My sense of well being, is it God, is it positive energy, is it the weather? Acceptance? or just Love? Whatever it is, I will take it.

have a great week.

Friday, July 4, 2008

Independence Day



To all our friends, families and unknown supporters we wish you a very happy Fourth of July. This has been a really good week for Adam and I think he will have a great weekend. Today is a radiation therapy holiday but he will have to make this session up at the end. He will get 20 radiation treatments in all. Because he missed a chemo two Thursdays ago and had to make that one up on Monday he will now be going for his weekly chemo on Mondays. Martha thinks his hair may be trying to grow back. He does have what appears to be a 'five O clock shadow' on his skull. Peace.
ps--we are now only missing 9 plates to complete our USA License Plate wall project. Delaware, Kansas, Nebraska, New Hampshire, Oklahoma, Oregon, Rhode Island, South Carolina and Washington.

Wednesday, July 2, 2008

summertime

Adam had his pal Antonio over to spend the night last night. They played outside, down the street, flirting with a neighbor girl (Joanna), squirting each other with the hose, goofing off and who knows what all. Today Adam spent most of the day with that same neighbor girl's family at their pool. I think he had a great time. All this despite his daily radiation, a chemo trip on Monday and one planned for tomorrow as well. Adam is having his summer. This may be known by the future Adam as 'my cancer summer' but he will also have fond memories, I think, too.

Camille has now gone down for a short visit with Juju and Bear and then a week long trip to Kanuga with my cousin Carson, her husband David and their kids. What a generous offer! Camille will have a blast. Her summer is going pretty well too.