Graham's Ninja Birthday

All things being equal, I don't think Graham's Ninja Birthday could have been any better. It was one of a kind and the only sad person there was the little girl that showed up an hour late. It did not go off without a hitch tho. In fact, it started out somewhat violent with a game of soccer. The boys were busy playing boy style and the girls just weren't too sure about that. Thankfully, Adrian called the party to order and after that it was pretty smooth sailing.

So what do you do at a ninja birthday party? Well, you learn to be a ninja, of course. Just don't ask why a Korean Tae Kwon Do studio is teaching a sacred Japanese art. That really isn't the point. None the less, all of the boys and girls had to learn to hit, jump, and kick to earn their ninjadom. The crowning achievement was where they had to demonstrate their prowess by breaking a board. Graham led them off with a display of his considerable talents. He split a board with a flying 360 round house. Slowly, they made there way around the room as each junior ninja in training broke their board. I think some of the most fun to watch were the little girls. They approached the board with significant trepidation. For many, the fear was palpable from across the room. But, Master Adrian worked with each one of them to make it through their fears. It was the look on the little girls faces when they actually broke the board that made every one's day. I can guarantee that you have never seen such a look of both shock and pride wrapped into one. I heard several of them ask the mothers to stop by Home Depot on the way home to by some more wood to practice. Sydney finished up the round by breaking her board with an ax kick.

Pretty impressive, huh? What you are missing from this picture is the fact that Sydney had a crush on one of the little girl's older brothers that also attended the party. He was both impressed and a little scared.

Good!

The rest of the party was typical fare. Cake, presents, and a thank yous. All in all, it was perhaps the best birthday Graham had every had. I don't know how we will ever top it.


For the meantime, we will just enjoy the memory.
Purpose is also about making memories.

Graham's 7th Birthday

Dudely has achieved the greatness of being 7 years old today.

Unfortunately, I have got to run. There is Dudely stuff to do.

He is my purpose today.

My side effects from childhood cancer

Well 8 years into it and I can tell you that the impact of having a child with cancer still forms much of who, what I am, and what I think. I don't know that I will ever return to "normal" and, frankly, I don't know that I ever want to. There is still much good to come from the bad and, while I am not saying that anything is worth Sydney having cancer or a child dying from cancer, there are positives that out way many of the day to day negatives that come with the stigma.

I still maintain that I am a better person, a better husband, and a better father for the experience. I enjoy what I have now so much more than I ever did before. I am more compassionate. I am more thoughtful. I am nicer.

However, like anything else that seems to come with treating cancer, I have side effects. Today it is an annoying parental side effect which is the subject of my entry.

Ever since Sydney was diagnosed, I see cancer. I see it everywhere. No matter what happens it is the first thing that comes to mind. Do you have a headache? Could be cancer. Does your toe hurt? Could be cancer. Did you sneeze? Yep, probably cancer. Laugh at me if you like but it is what it is. I can't help it. Now that I think about it, I wonder if it is a cancer ;) ?

And so, when Sydney starts grabbing the side of her chest and complaining that it is burning inside like she did over the weekend, cancer is the first thing I think about. Of course, you may say that is understandable. But, it does not stop there. Graham had blurry vision at school on Monday and I find myself wondering if it is cancer.

In fact, I have a sore neck going on 3 days in a row.

Could it be cancer?

Yep , I am mental and while I can't say for sure that I would have been this mental without childhood cancer touching my life I am going to be sure to blame it on it anyway.

It is a convenient excuse and it let's me quickly move on to thinking about one of the better side effects of this condition - My Purpii.

She hasn't killed me yet but she came close.

Happy Monday! Bring on the relaxation...

Yep, welcome to my world.

Actually, last weekend wasn't that bad. Although I did work for about 12 hours on Saturday and another 6 on Sunday(much to Lynley's disapproval) I did get to spend several hours Sunday afternoon on the golf course.

Oh, don't give me that look. I played with some big wigs from Lynley's school. I wanted to stay home and watch the kids but, noooooo, she made me go play golf.

Still don't feel sorry for me? That's allright, I really don't either.

The hard work this weekend certainly fell into Lynley's lap. As you can probably guess, outside of a little laundry I was completely useless to her. She was knee deep in kiddos and, by the end of the weekend, she had that look. You know. That look where your brushing bride of 15 some odd years looks into your loving eyes and says, "The only reason I am not going to kill you is because these are your children and they will need a father when I leave."

Yeah, I was not a very good Daddy or husband this weekend. Better place a check mark in the neglectful husband and father column. The good news is that I can finally see the horizon. This week brings the end of several projects and a chance for me to get back to doing what I love best.

I get to get back to my personal purpose for awhile.

Kids are like candy

As has become the norm as of late, I get up in the morning, turn on the computer, and look in the bottom right hand corner only to be shocked. Crap, it is Friday already.

Where did the week go?

Normal people would be thinking - "Oh boy, the weekend, time to relax."

Not so for me. You see the 16 hour weekdays that make up the work week are my time to relax. It is the calm period of predictability before I enter the chaos of the weekends where the kiddos seem to rule.

Don't get me wrong. I adore my kiddos. But, did you know that my blood pressure averages about 10 points higher on the weekends.

Really.

Isn't that weird? Here, I work a solid, nose to the grindstone, 40 hour week of consulting with an additional 20 to 40 hours of nonprofit work during my work week. Yet, it is my health that seems to get squeamish during the weekends.

What does that say about the chaos I live in? Jeez, what does that say about my parenting skills?

Ever since I started noticing fluctuations in my blood pressure I started wondering what the cause was? Then, I started paying closer attention to what was going on. Don't tell anyone, but I feel far more pressure at home. At work, I am on my game. I exude confidence. I have absolutely no doubt in my ability to identify a business problem, architect a technology solution, build it, and put it into production. No matter how much money is on the line, I don't even break a sweat. I know I can deliver and I know I can surpass expectations.

No pressure there.

At home though... Wow! Things seem to come so much faster. Wife has a list of things that need fixing. Graham "needs" me to play Wii with him. Ainsley "needs" new batteries in the nuclear candy bomb she is building (speaking of which I will probably need to find out where she is hiding the candy wrappers this week). Sydney wants a hug and help with a homework project. Oh, and I have to get the laundry started and breakfast on the table. After all it is the weekend and we must have eggs, bacon, sausage, english muffins and grapefruit on the table.

That was just the first 2 minutes of the weekend.

Now we have Tae Kwon Do, grocery shopping and 2 birthday parties all before 1 PM. Oops, I just realized we need to get gifts for the birthday parties. Now we need to fit in a trip to Walmart somewhere in there too.

I just don't know how to get it all in. How do you keep them all happy? How do you divide yourself into fifths?

That is the pressure that effects my blood pressure.

I have come to believe kids are like candy. They are really yummy but not very good for your health.

Yet I also know that it is my purpose that puts the pressure on and I wouldn't do anything to change it.

Got Georgia on his mind

It was not long ago that we got together as a family and watched Disney's "The Sorceror's Apprentice."

Why does that matter, you ask?

Well, it wasn't very long into the movie that Jake Cherry, playing the young Dave Stutler (the Sorceror's Apprentice) passed a note to young Becky (the love interest). Essentially, the note read:

Please check one:
I want to be Dave's

• friend or
  
• girlfriend

It was a cute beginning to the movie and the catalyst that lead to young Dave finding out his true identity.

Other than that, I did not think much of it.

Until, yesterday.

My son, the stud, came home. It seems that Graham took his cue from the movie. He had drafted a note much like the one above and it bore a checkmark in the girlfriend box. The Studster had carefully crafted the note and slipped it to a little girl (Georgia) in his class. She checked the girlfriend box and, as of now, Graham, has moved himself from the 'available' column to the 'taken' column on the Love chart.

Now I have no expectation from 6 year old, 1st grade romances but I can tell you that I remember mine vividly. My heart was torn between Rachel Robbins and Ivette Naparstik.

Oh, those were the days.

I hope Graham can look back at it in some 30 some odd years and remember it with as much happiness as it brought me.

For now though, he certainly has Georgia on his mind.

Score one for the Dudester.

I'd like to say Graham has a gift of some of my purpose but, as anyone that knew me at that age knows, he has far surpassed me in the suave department. Go G-Man!

Tell me no?

Okay, so, Sydney is 9, right?

She is young and impressionable, right?

Then, if she is so darn young and impressionable, why doesn't she just do everything I tell her to. It would really make life much more enjoyable for all parties involved.

Believe it or not. I think Sydney developed the habit of not doing what we tell her after watching Ainsley. Before that, I don't think she ever realized that she could just say "No." We had Sydney brainwashed perfectly. For the most part, she simply did what she was told. On occasion, she might try and hide the fact that she did not do something that she had been asked to but, she would never, ever have considered telling us "No" when asked to do something.

Now, she does.

And, frankly, (to quote Bill Cosby) we brought her in this world and we can take her out.

I am still in the fight but I must admit that I am pulling my hair out over this one.

Telling me no. I'll tell you who can tell me no. You &%*@# (*&^#@ little twerp. Certainly not a 9 year little *&^$@#. Telling me no. I'll tell you no.

I apologize for the rant, but that is the conversation that goes on in my head every time she tries it. I always said I would not become my mother in those situations but I sure can hear that old conversation going on in my head.

Well, regardless, this weekend we took a hard stand against little miss "no." After Tae Kwon Do when I asked her to change into the clothes we had brought for her so that we could go out afterwards she did it. She said no. I politely told her that she could either do it herself or we would be doing it for her. She said no, again. At that point, we cleared the way. Lynley got the top half. I got the bottom half and we changed her into the clothes we had brought.

As you might expect, she did not like it. She threw a fit of gargantuan proportions. She kicked and screamed and, in the end, earned a one way trip to her room for the weekend.

Now, it isn't that I really cared that she changed clothes. In fact, had she given me a reasonable and polite explanation of why she did not want to change, I probably would have let her stay in her uniform. However, since she rudely said "no", this seemed one of those occasions that she lost the option to choose.

She is nine!?!? Have a already lost my daughter to teenagerism?

Did we handle this right? Did we do it wrong?

I have to believe that there is a better way of dealing with this but for the life of me I don't know what it is. I can tell you that, so far in the short term, she has not even considered telling her mother or I "No." After all, that is what we were going for. I just wonder if the effect will last and what we can do the next time to handle it better. Oh, and you are not allowed to tell me to talk to her nicely and get to the root of the issue. I have tried that until the cows come home. While that sometimes works it always just spurs on more and more nos.

Once again, I find myself with a mountain of purpose but no clear path over it.

I hate pharmaceutical companies

Wow, that is a bold title. But, perhaps, just once, a statement as strong as that might just capture the attention of somebody that can figure out how to make the difference. The irony is that it isn't the pharmaceutical companies. It is the system.

Believe it or not, in the United States of America, potentially life saving drugs for children with cancer disappear everyday. They vanish because there is no profit potential. Drugs that can save lives are shelved because they won't save enough lives for pharmaceutical companies to make a profit. So, the drugs are shelved until they can be sold off or until they can find another use for them. Unfortunately, research based upon those drugs is, for all practical purposes, wasted.

It is a sad and horrible situation and one that we have fallen victim to time and time again.

Think I am making a bigger deal of this than it really is?

Did you know that in the last 25 years only one drug has been approved by the FDA for a childhood cancer indication? One drug! And, the only reason that one got it was because it was also used for adults with cancer.

It isn't that powerful drugs haven't been brought forward. They have. The problem is that there is no incentive to make the drugs available for children. First there is a huge risk factor. We are talking about kids with cancer and we are talking about strong drugs which most likely have risky side effects. The problem is that, if a child dies during the course of a treatment with a particular drug, it is a public relations nightmare. It can not only kill a drug but it can also kill drug companies.

It isn't that the drugs are bad. It is that the cancers are and, in this day and age, many of the best drugs to defeat the cancer are incredibly toxic. Some kiddos die from the treatments they receive. As much as I hate to say it, it is a reality. It is horribly sad. But, what only make a tragic situation worse is that it also keeps many drug companies from pursuing pediatric indications.

Nobody wants to be the manufacturer of drugs that kill children - even if it saves far more lives.

The other major problem is the monetary factor. As much as I would love to blame pharmaceutical companies for being money grubbing, the fact of the matter is that they are in the business (like most other businesses) to make money. They aren't "not for profit". They have to make money. The problem for us is that even though childhood cancer is the number one killer of children by disease in the US there aren't enough of them to turn a profit for a drug company. Their simply isn't.

If the cure for all childhood cancers was discovered tomorrow as a shiny white pill. If it had no side effects and cured all childhood cancer patients immediately it still would not turn a pharmaceutical company a profit unless the drug had another indication in either a more prevalent cancer (like breast, lung, or prostate) or another disease entirely. Yes, the cure for childhood cancer would have to be supported either philanthropically or by a tiny upstart pharmaceutical company who had their eyes on tiny successes. Honestly, from a business perspective, the value of the cure for childhood cancer to a pharmaceutical company would be less about the amount of revenue it generated and far more about the amount of goodwill it could generate.

It is sad. But true.

Here again, I sit with no real answers but with a mountain of frustrations after watching no less that 5 promising drugs become unavailable, simply because their is no profit motive outside of childhood cancer to carry the drugs forward.

This is a case were children with cancer need strong governmental incentive for drug companies to get involved with childhood cancer. I don't know what the specifics of the incentive are but I do know something must be done or we will likely look back in the next 25 years to still only find a single drug with a pediatric cancer indication.

I understand the problem. I just don't know how to fix it. Do you?

It just feels like empty purpose.

The power of a slurpee

It has been a while since I have had the opportunity to write an update on my beloved rugrats. For better or worse, there has been nothing glaring to report about. While I would not say they have been quietly growing up, they have been doing so without major drama - well drama worth writing about anyway. In an era which seems completely chaotic to Lynley and I, they seem to be the steady eddy. They roll with the punches.

Surprisingly it has been Ainsley who has probably turned into my stand out. She and I have developed a habit of running to 7-11 for Slurpees. Honestly, at this point, I don't know who has a stronger addiction - me or her. I can, however, tell you that either she or I can always find a way to get the other out of the house to make a trip to our nearest 7-11 watering whole for the flavored, icy masterpiece in a cup.

It is strange how an entire relationship can be transformed by such a simple act. In fact, as strange as it sounds to say it, I have to tell you that the simple act of getting a Slurpee has completely and utterly revolutionized my relationship with my daughter. Slurpees have brought us together.

Oh, sure, we have always been Daddy and daughter. She has always been adorably obstinate and utterly sneaky. I have always loved her for those qualities. We have always snuggled and cuddled. We have been engaged in each others lives. To point, it isn't as though we weren't close.

Slurpees have just brought us 10 times closer than I could ever imagine. We now have a thing, just her and I. It is something we have in common. For so long, we were simply father and daughter. I think we were as close as most fathers and daughters are. We just never really had anything in common. She was a little girl and I was a big man. Outside of the fact that we were father and daughter we really did not have that much in common.

Strangely enough, Slurpees gave us that. It has been the catalyst, the spark, which has completely transformed us. I really don't know of any other way to explain it. It started off as just a chance to go get something sweet to drink. But somehow that turned into an opportunity to talk about our lives, to giggle and to just be together. We have developed a true friendship and an interest in each others lives that we had never had previously.

All over a Slurpee...

It is that easy. One little thing can make all of the difference in the world.

Wow, I am amazed at how many flavors purpose comes in.

A litany of excuses

Good morning. Well since the inception of my blog there had never been a week go by that I have not written. What can I say? It was a new first. It is not one I was particularly happy about but the fact was, I had never been so busy. Over the last week we had an ice storm that kept the kiddos home from school for 4 days. On top of that, my mother slipped on the ice and did an excellent job of breaking her arm which landed her in the hospital for a few days. In the meantime, I was due in California for a presentation at a 3 day NANT meeting. And, finally, what week would not be complete without a nice burst water pipe for good measure.

And that was all of just the non work stuff.

It has been chaotic.

The good news is that DeeDee is on the road to recovery. Luckily, all the king's horses and all the king's men were able to put DeeDee back together again. She had fallen on the ice while trying to make it down the driveway to close the lid on her trash can. We are hopeful that she has learned her lesson and that the next time she will just let it be. It was a stiff price to pay for cleanliness.

In the meantime, there was much chaos going on around the house. A few days of being shut ins and it seemed everyone was becoming a little stir crazy. No one was affected more than Lynley who could probably use a weeks vacation - sans kiddos. She reached her melting point. And where was her useless husband in her greatest hour of need? He was off gallivanting on the sunny beaches of California, soaking in the sun, and drinking margaritas with little umbrellas in them.

Well, that was her impression anyway.

The truth of the matter was that I was being churned in a 60 hour whirlwind of neuroblastoma research. I am sure I will write about it in the days to come but suffice it to say that I don't think I have ever came out of a NANT meeting with more hope for much of the clinical research they have planned but with more frustration regarding pharmaceutical companies. Mark my words - the biggest problem with neuroblastoma research is not a lack of funds (although it is one). Right now, the biggest challenge facing neuroblastoma is a lack of drugs. Every time I turn around another drug has disappeared, has become "unavailable", or simply just can't be "got." It is this challenge that continues to set research back years.

The good news to come out of the wake of the stunt speed boat that was last week is that the kiddos just seemed to ride the waves. Yesterday was their first day back at school and they slid back into routine without a hitch.

Clearly, they have become used to chaos.

On the other hand, as I age, I become less tolerant of it. When things get crazy, my only response is to just keep my nose to the grindstone and keep placing one foot in front of the other.

I figure, if I keep focusing on my purpose, we will eventually make it through.