Apparently all "robbers" don't wear stripes

There was big excitement around the Dungan household yesterday morning. Just minutes after finishing up my morning blog post, I made my way upstairs from my morning ritual of passing out good morning kisses to the kiddos, picking out the school clothes (Lynley says I am capable of this because they are uniforms), tickling the late sleepers, and hopping into the shower. Everything was going perfectly. For a change, everyone on Monday morning seemed to be in gear. Kiddos were all well on their way to being dressed and Lynley was half "makeuped."

Not to be the one dragging my feet, I quickly made my way downstairs to begin making breakfast for the kiddos. As I crested the top of the stairs I looked out the window to find a car parked at the end of our driveway.

Strange, I thought.

I stood there for a moment trying to process this information. For the life of me, I could not come up with a good reason that someone should be parked there. I quickly made my way downstairs and out the front door to investigate. Sure enough, as I stepped out on the front porch, I saw a male walking from the side of our house along the drive way.

"Excuse me, mayI help you?"

"No, I was just looking for my dog?"

Apparently, the cold air outside had frozen my brain a bit. I accepted his answer and stepped inside. Once inside, the gerbils started turning the little wheel that operates my brain. I started to put 2 and 2 together.

Hold on, he was carrying something and he put it in the back of his car. It wasn't a dog!

I peeked out the front window. He was still in his car. From the angle I could not make license plate. The car was a brown 4 door sedan. It looked somewhat like a Ford Taurus-y looking Chevrolet that had been "pimped." It had big shiny chrome rims that I am quite sure cost about as much as the car itself.

This still was not adding up. As he pulled away I grabbed my keys off of the counter. Once he was about half way up the street I made a beeline outside and over to our cars. Sure enough, Lynley's car had been cleaned out.

I bolted back indoors grabbed my cell phone and shouted to Lynley "I just caught breaking into your car and I am going to go follow him and get his license plate."

I slammed the door behind me, hopped in the car and took off. At this point he was long gone. I summoned all of my deduction skills and quickly came up with a plan. I know the TSA is not allowed to profile security threats. However, I am not the TSA. I made my best bet at where he was going and took off in the opposite direction. Within 2 minutes I was at the intersection of White Settlement and University Drive heading towards Jacksboro Highway. Guess who just happened to be two cars in front of me?

It took a mile or so before I could make my way directly behind him and get the license plates and try to take a couple of shots with the camera from my iPhone. Not knowing whether or not he had a gun I thought it best not to follow him any further. For all I knew he was driving slowly because he was trying to grab the gun under his seat. I pulled off to put some distance between he and I. Unfortunately, he crossed the next intersection during a yellow light at the next intersection and I was not able to follow him any further.

Lynley had called 9-1-1 and the very next thing I knew I was talking to the police. I quickly made my way home and met them at our door.

The police took our statement and before they left they had already identified the suspect. Apparently, the direction he was going was right towards his home.

And who said profiling wasn't a good idea.

We inventoried our cars and the next thing I knew, I was back out the door with the kiddos on our way to school.

I am still yet to hear anything although I know they have identified the suspect. I don't really expect to get anything back but, who knows, we may get lucky. I hope to hear something in the next few days.

What idiot robs cars at 7:30 in the morning on a weekday anyway?

There was actually some good to come out of this. Everyone is okay. Furthermore, it was a great learning experience for the kiddos. Ainsley was sure all "robbers" as she called them wore black and white stripes or black hoods. Now she knows better although I do fear that she assumes that all people that drive brown 4 door sedans may in fact be robbers. She also heard me give a description of the man to the police officer and may also assume Hispanic males in their late teens or early 20s may also, in fact, be robbers.

We are working to correct this.

Wow, excitement, education, and purpose and it wasn't even 8:00 AM.

Mid year report card

Good morning! I hope everyone had an excellent weekend. Ours was cool - well cold actually. Luckily, with kiddos of our seed, you would have to anticipate plenty of hot air. In fact, you could probably heat your house with it. That was the case. It was a fairly typical weekend with the Dunganlets and we even gave them a little leeway.

After receiving the report cards they truly deserved it.

So how did they do?

Sydney - Once again, she made the all A honor roll. She capped that off with a litany of E's and S+'s for her behavior, work ethic and performance in enrichment classes like computer, Spanish, art, P.E. and music. (S is meeting expectations so everything beyond that is gravy.) As usual, I have tried to take full credit for her excellent performance but people that really know me are already calling into doubt my paternity?

How could that be possible? Mark's kiddo, really?

Yep, you heard it here first. Plus, it must be my genetics. She already got Lynley's good looks. She could not have possibly gotten her brains, too. Something has to be attributed to my genes.

Graham - Well, we saw great improvement with Graham. He still needs work in a couple of areas but it is abundantly clear to me that we are seeing improvement across the board. He is still struggling with recognizing high frequency words. You have heard me pine away about this before. He just seems to have no capacity for this activity. However, there is improvement and it is getting better with time. We will continue to work with him and hopefully we can get him where he needs to be. I just don't know how to help him and I know it is frustrating for everyone involved.

Ainsley - No report card for Ainsley. Honestly, I still have no concept what-so-ever of how she is doing or what I could do to help her. From my point of view, she is still probably the smartest of the bunch (my bunch). She gets it. After her last review though, I must be honest and say that I have lost a little faith in the system. They scored her aptitude at that just above a plankton. I find that laughable. Historically, according to her previous teachers she has always been at the top of the class. She has also tested particular well. Furthermore, at home, I have continued to see improvements at a pace greater than that of my other two so I am really at a loss. Regardless, she will be testing for kindergarten soon and I am anxious to see what that brings.

Well, I had best be off. Once again I find myself at the beginning of a nightmarishly busy week.

I will just keep plugging away at purpose.

Sense or Science?

There has been a lot of talk over the last couple of years about personalized medicine. These talks have even trickled over into the world of neuroblastoma. On the surface, it seems intuitive. Analyze the kiddo's neuroblastoma, see what drugs would work in the lab to kill that child's disease, and then give the child that drug. It seems simple enough. Right?

In a perfect world, yes. But, in reality, this is much more difficult and my fear is that we are not quite there yet. However, does this mean we should not be pursuing personalized strategies in relapsed neuroblastoma?

There are many examples in neuroblastoma where we could use these strategies. Accutane and it's use is a perfect example. According to a phase III study, the gold standard of clinical research, it has been shown that Accutane increases survival when given during the maintenance phase of treatment. Clearly it does not work for everyone. If it did, there would be many more survivors and fewer relapses. None the less, it still does increase your overall chance of survival. How, though, do you ensure that it is working for your child and what should we be doing to ensure that it is?

This is where personalized medicine comes in. From animal studies we know that we have to get a certain sustained concentration of Accutane in the animal before the drug can go about its business of killing neuroblastoma. Therefore we have assumed that for people to benefit from it we must also ensure that they reach this threshold as well. From pharmacokinetic studies we also know that the drug is absorbed into kiddos bodies at all different kinds of levels. Some kids get really good levels of Accutane - others not so much. It is extremely variable. The reason(s) for this disparity are relatively unknown although there are all kinds of theories. It could be the food that they take with the drug. It could be genetics. It could be a myriad of factors.

Regardless, by design the amount of drug that is given to these kiddos is essentially the amount that appeared to allow as many as kids as possible the ability to achieve the necessary drug level to kill neuroblastoma without causing unreasonable side effects. It seems a reasonable method of establishing a dose, does it not? - Trying to help the most kids you possibly can without causing needless side effects - what a nice concept.

It is a reasonable method. Unless, of course, you are one of the children that is not benefiting from the drug because you aren't achieving the drug levels necessary for activity yet you are still receiving all of the "benefits" of the side effects.

It seems this is a perfect opportunity for personalized medicine. What if there was a test that you could take during your treatment with Accutane that could tell you whether or not you were receiving enough of the drug to achieve the necessary levels for activity? If that existed, you could adjust your the amount of drug or your child's diet to increase absorption. For those that are achieving high levels of activity you could perhaps cut back on the dose to spare a child from side effects.

That is personalized medicine.

However, is it that simple?

It turns out that you can get such a test completed. Obviously, if they were able to do the PK studies to see that drug levels were different they could make this into a test. So, yes, even today, you could find a way to get this test done on your child.

However, there is a rub. While we do know that it takes certain levels in mice to see activity we really don't have any proof in humans. We are assuming that it translates from the animal model to our kiddos. The fact is that, at this point, we really don't have any proven correlation between more drug and more activity in humans. It is what we believe. It is the direction that all of the evidence points but, the fact of the matter is that, a study has never been completed that proves this (although some are in progress.) So, while it appears that we know the answer, we may very well not. In fact, stranger things have happened and in reality there are many similar examples in cancer treatment where less could, in fact, be more.

So, even with Accutane there are tests that we can use to help personalize medicine. The problem however is that we don't truly know what to do with that information. We often have the capability to test a tumor or a patient to identify certain characteristics of their disease. We even often know of drugs which have been shown in preclinical models (rats, mice and Petri dishes) to kill disease which has those characteristics. Unfortunately, we just don't have any proof that it actually will work in our kids or work better than the "standard" of care. I wish I could say that preclinical tests often predicted the outcome of a particular treatment but unfortunately history shows the opposite. There are mountains of therapies sitting in the wastebasket because the reality did not live up to the preclinical proof.

Do we go with what has been proven or what is likely? In relapse, is it even a choice when there is nothing that is seemingly proven?

This is the type of problem which impacts much of personalized medicine in neuroblastoma treatment. This is why I say, at this point, it is more sense than science. There are no absolutes. There is nothing proven and until it is it will not make it into mainstream neuroblastoma treatment.

Now, the last thing I want to come off is anti-personalized medicine. I am very much the opposite. In fact, if Sydney were to relapse today you can bet that I would very definitely be informing my decisions based on characteristics of Sydney's tumor. I would be checking her disease against drug panels. If she was going to face Accutane again you can bet that I would probably be checking her drug levels. Would these findings dictate our treatment? Absolutely not, but you can bet that they would influence it.

It isn't science. It is sense. But that doesn't mean it is not helpful.

And the one thing I know for sure is that we need more science and more proof so that we can make a personalized medicine, the science, a reality.

Just so you know, there are a few ongoing studies looking into personalized medicine. All are viewed with a grain of salt as they should be. But, that does not mean that they should not be viewed. It is the interpretation that needs a grain of salt.

In this case information is purpose too.

Boy, I have been bad.

Wow, I received a ton of email after yesterday's posting on relapse. I have clearly been remiss in writing about neuroblastoma as of late. I apologize and I will take your words of encouragement to heart.

In fact, I was so inspired that yesterday I set up 3 online neuroblastoma seminars for February. We have plans for doing about 20 seminars on neuroblastoma treatment issues this year. In fact, I am applying for a grant to help cover the costs for some of the video production, hosting and distribution. The grant proposal is due next week. I better get to work. There is much on the horizon. Regardless, I will do better and I will write more. Thank you.

All of the emails I received yesterday essentially confirmed what I was talking about. Family after family wrote to share their experience and most fell into the category of feeling completely overwhelmed and "underknowledged" about relapse. There were a few families that wrote that fell into the same category as our family. They had a supportive and knowledgeable medical team and that seemed to be key. Ironically, a few of them specifically wrote about their great relationships with oncologists who have a reputation for being less than "snugly." I mention that only to say that perhaps everyone should have an open mind when dealing with the experts. That is an important point. I know that first hand, there are a few oncologists that I deal with that have had horrible reputations in dealing with families issues. Yet, I found them to be the most honest and straight forward. It makes you think. What kind of oncologist do you want the support of - one that tells you want to hear, one that gives you the cold hard facts, or something in between?

There was another great point that was made in a few of the emails that I don't want to leave without mentioning.

PERSONALIZED MEDICINE

There, I said it out loud. Many wrote to point out that a single strategy for relapse was nearly, if not totally, impossible. I tend to agree. At this point, there is no single road map for success. Your child's success very much depends specifically on his or her disease and ability to tolerate treatment. It isn't perfect. You have to play with the cards are dealt - crappy ones - and figure out how to turn the hand into a winner. Many try to make the leap at a molecular level. They believe that if we know the biological characteristics of the disease we can target them specifically. This is the whole idea of personalized medicine - customizing therapy to the individuals disease.

It is a great idea and to a certain extent it is what I am advocating. However, it is still far more sense and far less science.

GASP!! Did he really say that?

Yep, I sure did. Unfortunately there is not nearly enough space to deal with that topic today. So, I will save that for tomorrow or the next day.

Mmmmm purpose. And it tastes so good!

Relapse's lack of direction

Last night I received another phone call from yet another family who is fighting relapsed neuroblastoma. I find myself amazed by those families who feel like the receive no direction from their oncologists. I guess we have always been lucky with a team who was always willing (and found the time) to take that extra initiative. I can't say that I have always started out agreeing with Sydney's oncologists, but I can tell you that we always finished in agreement. In the end, we always made a decision together as a team - all for one and one for all - and we always understood the bare bones risks and rewards of every decision.

I can't imagine entering into a fight for my daughter's life without that type of relationship.

However, I am also very aware of that most people do not have that relationship with their child's oncologists. Some of the things I hear most often are:
They gave us a choice between option A and B but when I asked their advice they said it was up to us.
The talk was too technical and I could understand it.

(I want to be clear. I am not blaming the oncologist or the parent. I have seen both sides of these discussions. It is an impossible scenario for both sides - but that is a discussion for another time.)

Regardless, what a crummy way to come out of a meeting on how you were going to fight for your child's life.

Many, if not most, of the parents I talk to feel that they begin to feel their child's oncologist begin to distance themselves after relapse. This generally begins with "the talk." If you don't know what "the talk" is you probably don't want to know. But, when your child relapses, it is the talk your oncologist should have with you. It is not pretty and it is not comfortable. It is the second moment in your neuroblastoma journey (first one being diagnosis) when you are confronted with the very real reality of the death of your child. In this case it is worse because 9.9 out of 10 oncologists are going to tell you that your child will eventually succumb to the disease. It is the first time that you hear that your child will not survive. In fact, from the feedback that I get from most parents, they are not provided any hope.

It is more surreal than you can imagine.

It is ugly. But it is a necessary evil. I think it prepares parents with the realities that they need to make some very difficult treatment decisions. If you don't have this talk you don't ever realize the absolute stakes of the game. You may think your child could die but you don't realize the gravity of the situation. This is game time. Every decision counts. The problem is that many parents don't ever recover from this conversation. And, it seems, neither does the relationship. I can't tell you how many families feel entirely directionless at this point and I can't tell you how many feel alone and unsupported. But, it seems it is very much the majority of parents that I talk to that feel this way. This is only complicated when the parents hear the survivor stories and realize that they have more choices than just death. They begin to realize that this black and white "talk" is actually almost entirely grey. At this point though, I wonder, has the damage already been done?

It is frustrating to me because I know that there is hope. There are no guarantees or absolutes. But there are things you can control. By maximizing your opportunities there are many kids that have achieved second and greater remissions. There are families that have greatly enhanced quality of life or added months or years onto lives. The trick is not so much in doing the right thing as it is in not doing the wrong thing. You need a plan in place before the marrow has been blown away and you need a plan which not only considers the next treatment but takes into consideration everything that will come down the pike. What is needed is a completely personalize treatment decision tree. However, it takes a team that aggressively goes out there and searches for a plan that will work best for that particular child. A parent can't do it alone (although there are examples). It also takes someone with the medical knowledge and experience to evaluate which treatments are best for each child at different points in time - a person who can explain the risks and trade offs of every option in words that the family can understand.

Who has the time to do that?

An oncologist with 100 other active patients - each with different circumstances and diseases?

Does a parent have the time to learn all of the research and its implications - while caring for a child with cancer and trying to maintain a job?

There is no easy answer but it seems like the onus always falls onto the parent to do the research and to find the path.

No wonder parents feel no direction.

It is no one's fault. It isn't the parent and it isn't the oncologist. It is unfortunately a reality of the way things are.

I have got to start getting the information out to parents in a way that everyone can understand it. I have got to ask the tough questions of the experts and get the answers out there for all to see. I have been remiss.

That is the only solution I see.

Wow! So, this entry was pretty much just a regurgitation of frustrating thought.

It is good though. I have purpose and I can do something about it.

Back To School

Today the kiddos officially go back to school - albeit a protracted day in order to preserve their sanity. Yes, they will be back out and running amuck by 11:00 AM. I know, it hardly seems worth it. But, do I really need to go in to yet another diatribe on how I feel about this half day nonsense? I guess not.

So, some catch up on the twerplets. Yesterday also marked their return to Tae Kwon Do team practice. While they did practice twice per week over the holiday, they were not official "team practices." Last night's returning team practice definitely put an end to that break. We are entering tournament season and they are back to some serious Tae Kwon Do. The first major tournament will be in Austin on the weekend of the 23rd. That will lay the foundation for their participation at state which is not too far down the road. These will be the first big tournaments of the year for Sydney, Graham, and the rest of the team. Given that, you can bet that the practices have moved into full throttle.

Are Sydney and Graham ready for that level of competition?

To compete, yes. To win? That is a long shot. We are looking for them to get some experience under their belts. Here we are looking for them to defeat their own demons. If they do well - all the better. But, don't loose sight of the prize. This is about personal growth for them. For Graham it is about building confidence. For Sydney it is about conquering her fears.

Well, I must be off. I am taking the kiddos to school today and hanging out on that side of town this morning (no reason to make 4 30 minute drives each way this morning.) I will be calling Barnes & Noble my office this morning.

My purpose is portable.

From the hip

Good morning! Well, today marks the official last day of Christmas vacation for the twerplets. They are still off today and half of the day tomorrow. (Apparently, going back on Monday for a full day of school would have damaged their fragile psyches and left them even more unbalanced. Of course, they do this without any regard for what it does to the fragile parental psyches.) Regardless, today is their last full day of Christmas vacation. I am a bit surprised by my kiddos. Sure enough, there has been some infighting. However, the good news is that it has been no where near as bad as memory has served. On any given day, for the better part, they get along.

Who would have thought?

Just so you know, I am going to go ahead and take full credit for these successes. I have no idea whether or not their good behavior was truly a result of my excellent parenting but I am going to go ahead and accept responsibility for it anyway. For the fun of it ( I mean, in order to grow our children spiritually and intellectually), I decided to punish the kiddos every time I heard them fighting. It was not so much a punishment as a segregated cooling off period (a "time out") My punishments were quick and universal. The moment I heard an argument I brought them all in and I sat them all down against different walls in the room for 5 minutes.

I know. Mean, mean daddy.

Low and behold, it pretty much worked. The next thing I knew the kiddos were playing nicely together. Apparently, they would all prefer to be playing nicely together than sitting along in a quiet room against the wall. Furthermore, by punishing the whole lot, the twerp not involved in the argument was, all of a sudden, a lot more interested in finding an equitable resolution than choosing sides.

No more ganging up.

I solved a centuries old parenting conundrum.

I must admit, I was a little shocked. Frankly, this parenting was totally from the hip. Am I getting good at this, or what? A few more children and I bet I could get this nailed down.

Don't tell Lynley I said that.

She thinks we have enough purpose and I have enough playmates.