Thursday, January 28, 2010
Mind you, yesterday, I had my fill - once and for all.
We were on the way to school. As is the Wednesday morning tradition, I worked with Graham on the memorization of his bible verse. Although we generally work with him several times during the week it always seems to come down to the Wednesday morning drive to really get it ingrained.
I think I mentioned it as recently as yesterday. Graham sucks (technical learning term) at memorization. Like his Daddy, this is not one of his life skills and something that he will likely struggle with all of his life. We are good at math, we are good at understanding the meaning of things, we have a photographic memory, but, for the life of us, memorization is nearly impossible. It is the way we are built. It just is.
For the girls in the family, memorization is easy. Just like their mother both girls can look at something once and have it memorized in mere moments.
Unfortunately, Graham and I just can't do that. Our brains are wired differently.
The problem with this little "difference" between the girls and the boys is that the girls see this as stupidity. They taunt Graham and make it nearly impossible for him to memorize anything. This just makes it harder and increases the pressure. Graham needs intense concentration to get those memorization synapses firing. The girls don't give him a moment. Worse yet, they laugh at him which does absolutely nothing for his self esteem.
After several polite attempts to get them to stop their taunting in the car yesterday morning without any success I finally unleashed - and I mean I unleashed. Perhaps it was from years of pent up anger from my own childhood or perhaps it was from seeing my son step in my least impressive footsteps, I released a tyrant of previously unseen proportions.
I really laid into the girls.
I made my feelings known.
The rest of the car ride was quiet with the exception of Graham who gradually and ultimately mastered his bible verse.
When we got to school neither of the girls would make eye contact with me. Sydney was mad that I unleashed on her but both were certainly fearful of whether another tirade might be burgeoning.
It was not one of my proudest moments. I am quite sure there could have been a better way to "teach" the girls to be more supportive of their brother. But honestly, like the cat and it's prey it seems instinctual. I felt I had tried everything else.
Throughout the morning the guilt piled up. Well, it was not only guilt. It was also a wish to make sure they understood what I was saying. I figured a heart to heart and a few hundred less decibels may be a better method of helping them understand - to help them find a little empathy.
As it turns out, the kids have lunches one after another at school. This gave me a one on one opportunity with each one of them. So,I grabbed some take out from Arby's and made my way to the school. By lunch time, both of the girls had recovered and both were ecstatic to see me. Frankly, I was a bit surprised. None the less, I spent some time trying to help them understand how mean they were being, how unfair they were being to their brother, and, despite their nastiness, how much Graham truly loved and respected them.
Ultimately, it came down to the Golden Rule.
Do onto others as you would have them do onto you.
I guess WE all learned that lesson yesterday, didn't we?
Purpose works in mysterious ways.
Wednesday, January 27, 2010
Funny how life works isn't it.
It looks like she and Graham may be participating in a small local tournament this weekend at GSX and we already have one on our schedule in Dallas in late February.
Other than this normal business the kiddos are all doing pretty well. They seem to be doing superbly in school. I am still clueless as to Ainsley's status but don't expect that to change. I do know that she has tested for Kindergarten but I have not heard the results. Time will tell.
Graham has really turned some corners this year. After the violent start to this school year I was a bit concerned. I think he has grown tremendously. Socially, he seems miles ahead of were he was last year. He has many more friends and gone are the daily complaints that his "friends" were mean to him. Academically he is improving as well. While he is still not out of the woods due to our neglect in the site words area, he continues to improve. At one point, I really was concerned about his ability to memorize or remember his sight words but I am beginning to think it was just some type of developmental hurdle. He is now on track and seems to be absorbing them at a good pace. Memorizing his weekly bible verses have improved as well. Honestly, these were pretty much his only weak areas. He seems to be doing rather well in all of the others. Of course, in the meantime, he remains my most conscientious child. He really has a genuinely good heart. It is worn on his sleeve but it is a kind and pure as could be.
Sydney is continuing to do well in school as well. She too is having some hurdles but I know she will make her way through those. Her biggest challenge right now seems to be her subtraction facts. Her speed is lagging a bit behind where it needs to be. This has brought her math scores down from the A+ to the B+ range consistently whenever subtraction facts are part of the exercise. It isn't that she is missing them but that they are left incomplete due to the time constraint. It simply takes practice. Honestly, if she spent a tenth of the time on subtraction facts as she has on the Wii over the last week or so her subtraction facts would have been mastered. That is probably our fault. Perhaps the guilt we feel given their packed academic and athletic schedules is impacting our decision to make them push that much harder. We are trying to achieve balance. Perhaps a compromise is in order. 5 or 10 more minutes a day of math facts probably wouldn't be the straw that broke their fragile psyches.
There I am glad we worked through that. I will add that to their schedules and blame the idea on you. That kills two birds with one stone.
Well, I had best be off. Another full day of purpose awaits.
Tuesday, January 26, 2010
What if we could catch neuroblastoma more quickly? What if we could keep a stage 1 from becoming a stage 2, a stage 3, or even a stage 4? What if we could catch kiddos even before the neuroblastoma was really showing at all?
It seems an easy enough solution. If we could just catch it earlier, it would be easier to defeat and it would spare children a ton of toxicities.
It is this line of thinking that lead many to raise research funds for prescreening and apply pressure to institutions to start prescreening.
The problem is that in neuroblastoma this line of thinking was misguided. The prescreening model did not work in neuroblastoma. In fact, believe it or not, prescreening for neuroblastoma caused more deaths and saved less lives.
There are many reasons for this seemingly counter intuitive finding. The first issue relates to the disease itself. Early stages of the disease are very different from the later stages of the disease. They are so different that there are many that believe that they may in fact be different diseases. In other words, if you were stage 1 you were probably always destined to be a stage 1. While the tumor may grow this form of the disease just doesn't possess the metastatic and deadly potential of the stage 4 disease. On the other side of this coin, if you had stage 4 disease you were probably, from the very beginning, always destined to have the most aggressive form of the disease. At the very beginning, it was probably already already showing the aggressive characteristics that make it so deadly. In other words, catch it early or catch it late, it is believed by many that you would always have stage IV disease. That form of the disease is that quick and that aggressive.
It is this issue, among others, that was experienced in screening for neuroblastoma. Several studies used urine tests to screen for neuroblastoma. The good news was that they caught a lot of it. There are reports that neuroblastoma incidence nearly doubled. The problem though was that they were not able to differentiate the "good" neuroblastoma from the "bad" neuroblastoma. In fact, many of these neuroblastomas went away on their very own. What we ended up discovering was that there was significantly more "good" neuroblastoma than we previously knew about.
Unfortunately, once we knew these kiddos had neuroblastoma we had to do something about it. We had no idea which kids had the good form and which kids would develop the bad form. So we treated them. There were hundreds of kids that received treatment for neuroblastoma that would have certainly gone away without any treatment what so ever. These kids were now scarred for life with side effects - unnecessarily. Worse yet, there were many that died - not from the disease but from the treatment. Yes, children died that would not have because we screened them. Had we not screened them, their tumors would have spontaneously regressed and those children would be alive today and those families would be whole.
Worse than that, the screening did nothing to increase the survival rates of children with stage IV disease. Those children still lost their battles in record numbers.
In the end, what we found was that by using screening techniques we were able to find a lot of the "good" neuroblastoma but we really did not find any more "bad" neuroblastoma. Worse, when we did get a head start on the disease treatment did not appear to have any impact on survival.
Dr. Archie Bleyer was one of the oncologists involved in the studies years ago that evaluated screening for neuroblastoma in children. I think he stated the cost of screening in neuroblastoma best.
“Once we diagnosed neuroblastoma, we had to do something about it,” Bleyer said. “And I have to say we killed some kids because of it.”
While I wish there was a tool or utility which could help us identify the "bad" neuroblastoma more quickly, their simply is no such tool available today. The good news is that there has been much research on new methods of identifying the worst cases of neuroblastoma. It will take time though before anything is capable of finding the answers we are looking for.
In the meantime, don't beat yourself up. Most likely, screening would not have helped you and it probably would have cost some other children's lives unnecessarily.
Sometimes purpose does not always bring the answers you are looking for.
Monday, January 25, 2010
I also was not nervous about them doing their best. I knew down to my very core that they would give it their absolute all. I knew they would put out 110% effort. That was the one thing I knew for sure. No matter how they scored they would walk out of the ring leaving nothing behind.
You see, in all of this not worrying about whether they won or lost, I never considered wow desperately they wanted to win. That strange feeling in the pit of my stomach was not worry about them but, worry for them.
I was a nervous nelly. Here, I had been schooled as a professional athlete. I have played in some of the toughest mental games to be played. In my twenties I had carefully honed those skills. I was the master of cool cucumbers everywhere. Following that we went through Sydney's diagnosis. While I can not say I was ever a cool cucumber during that time (I don't know if that is even possible) I did survive the experience, my sanity and marriage in tact.
It was quite a feat and evidence of my superior daddly coolness.
And yet, here I sat, before my kids in the bleachers quaking in my boots. I was a nervous wreck. How ludicrous.
Graham was first. I should tell you that he aced his forms. No one on the mat even came close. Of the 9 kiddos of his age and belt level he was the clear standout. He easily took home the gold.
Sydney did well. She was technically right on the money. However, the girl right after her showed power like no one else I had seen in their age group. Her technique was not as good as Sydney's but I think everyone was amazed by her power. This gave her the edge and at the end of forms Sydney would take home the silver medal.
On to sparring.
I had sized up Graham's competition earlier. While it is difficult to tell someone's technical level by their form at his age, I could still tell that Graham had a pretty good chance within this group. As a luck of the draw we received a first round by. In watching the kiddos I was completely surprised by the aggressiveness of this group. It was clear that each and everyone of these kiddos was far better at sparring then they were at their forms. This was my worry for Graham and it would come out when he was sparring. All in all, Graham did a great job, he fought well but he still lacked some of the quick thinking he needed. He is still a bit slow and can not quite put together the plan on the fly. Although we practice several offensive and defensive scenarios, he often gets them mixed up and ends up leaving himself open to attack. I think it is partly his age and I am extremely proud of how far he is coming. He gets better with every fight. He is showing technique which is lacking in most of the other competitors and I think once we can get them ingrained a little more he will be unstoppable.
Unfortunately for Graham's sake, he received a silver medal in sparring. It was close but he just missed the big trophy. As they called out the winner you could see the look of dejection on his face. He was heartbroken.
After the awards were passed out I received one of those hugs reminiscent of when he was 2 years old and we, his mommy and daddy, were the only things in his world. It was full, tight and complete. I ached for him but, as I told him, he did awesome and their will be more chances for the giant trophy in his future. I was proud.
Sydney's was next. Sydney showed true skills in the ring and, while the score did not seem to show it, she was in complete control. She dominated. In the end, she would tie and it would come to sudden death. The fact that they tied came as much as a shock to us as it did to the main referee who looked at the score at the final bell and gasped. His words were - "Oh come on, you have got to be kidding me." I should probably also mention that Sydney also threw 2 head shots, her first in competition.
It was sudden death. The first kick landed would score.
Need I say more.
Sydney receiving her trophy.
We could not have been more proud.
It is nice to see purpose rewarded.
Friday, January 22, 2010
Tomorrow morning the kiddos have their very first Tae Kwon Do tournament of the year. They are pretty excited about it. They heard that the sparring winners would be receiving 6 foot tall trophies and their eyes are filled with hope and glory.
Will they win?
I don't know. I haven't seen the competition. The good news though is that both Graham and Sydney have really grown as competitors. I would say that their technical skills are twice that of what they were prior to entering the previous tournament. However, in this tournament, the stakes are higher there is a bigger prize at the end. It will be very interesting to see how they deal with the additional pressure. At the very least, it will be great experience for them to work through.
As always, their is no pressure to win in the Dungan family. We are very clear about that. Their measuring stick is in the mirror. We want them to do their best. If a 6 foot trophy lies at the end of their effort, great, but honestly, I would be just as happy if they finished dead last as long as they gave it their all and did their best. Their is much more to be learned from defeat. Hey look, I am not trying to be noble here. I credit much of my success to my greatest failures.
You probably also noticed that I am no longer playing professional golf - and yet I still credit those two feeble years on tour as some of my greatest. I learned a lot about myself, my limits, and what was important in life. I am hoping that the kiddos can begin learning those little life lessons through competition as well - win or lose.
So, there you have it - big tournament in Austin. We need to be there (3 hours away) first thing tomorrow morning and believe it or not, Lynley and I still haven't figured out when we are leaving or how long we will be staying. We may leave tonight or we may leave early tomorrow morning.
It is just another Dungan adventure.
I am just hopeful that we all find a pile of purpose at the end of this journey.
Wednesday, January 20, 2010
Still, I am right.
Today's rant has primarily to do with the use of antibodies in the relapse setting. Now, with any story there are caveats. However, I am dealing with a specific scenario and I think it requires some deep thought. I am not talking about the hundreds of possibilities that exist outside of this scenario. I am also not talking about children that have not relapsed. My thoughts on that topic would be different.
Enough said. Now, onto the story.
There have been many oncologists, some of whom I respect deeply, that have been advising patients to participate in the phase 1 hu14.18 antibody study offered at St. Jude's over going to Sloan for 3F8. While I do wish there were other and/or better antibody options for children with relapsed neuroblastoma (and I can think of many), as of this writing, these are the only 2 options we have. Even with this, I don't really believe that it is really an option.
I will tell you why.
The version of hu14.18 that is being offered at St. Jude's comes along with some trial design issues that make it almost entirely worthless. I am not saying that the antibody itself is worthless. In fact, I can make some pretty good arguments that it could, in fact, be one of the best. Unfortunately, in the way that it is being delivered in this trial I don't think it is in most relapsed kiddos best interest.
First,the trial is only being offered to children with measurable disease. The problem that we run into here is that measurable disease is often too much disease for an antibody to handle on its own without something else along with it (like radiation, NK cells, or chemo), in high doses, or for long periods of time; none of which does the hu14.18 trial at St. Jude's offer. In effect, the trial design is preventing the kids that would benefit the most from participating at all and favoring the ones it is probably least likely to help.
Second, as I understand it, they are only offering 4 rounds of the stuff. While I can't point my finger to published data, I think everyone feels pretty solidly that 4 rounds is probably too little antibody to do the job - especially for people with measurable disease. It is this problem that is one of the reasons that the COG modified their hu14.18/IL-2 antibody trial to allow patients to receive up to 10 rounds when they showed some response. I don't know if this is something that has changed with the St. Jude trial but it is a big fallacy when trying to win the battle with the disease. Finally, there is a lot of evidence by MSK which shows that patients tend to do better when they receive more than 4 rounds of antibody. It isn't enough drug. Period.
Third, it is a phase 1 trial. Trust me, I am a huge advocate of phase 1 trials. However, when you have a phase 2 option that is relatively proven, I can't understand why you would submit yourself to a phase 1 dosing trial unless you had no option. If we are truly trying to save kid's lives who have relapsed and have a real shot at a potential cure then the hu14.18 trial simply is not the right weapon to try to consolidate the remission. Look, I am not going to argue whether or not antibodies can replace a transplant. However, they have had some success and in a population that is probably not going to (and probably shouldn't) transplant a second time antibodies remain one of the only options with a proven track record of keeping kids in long term (maybe permanent) remissions.
Look, I like St. Jude's. I like the researchers. I just don't think this trial is in the best interest of most kids who are searching for their second "cure." If you have relapsed and if you have had chemo and/or MIBG and/or a slew of other treatments and you are in or nearing your second remission, antibodies should be on your radar. I just don't think there is any option of where to go in this case.
In this case, 3F8 is the clear winner because of the way that it is delivered, its track record, and its variety of options.
Sometimes you just have to be honest about purpose.
Tuesday, January 19, 2010
The escapees where Norman, our Sneagle (1/2 beagle, 1/2 schnauzer, 1/2 Heinz 57) and Hope, our Sheltie. Thankfully, later that night Hope was recovered. Unfortunately, at some point, they were separated.
We never found Norman. He never ever showed back up and our searches at animal control, the human society, and local veterinary offices were fruitless. We can only hope that he found a nice home with someone. It would not be surprising as he never met anyone he did not like.
It was sad for the kiddos and made for a somewhat bitter sweet holiday.
It did not take long, however, for Lynley to come up with the idea of adding another dog to our menagerie. After all, Hope needed another playmate. Of course, there was a litany of other excuses to go along with that. I was very firm.
No more dogs.
I even sent her the following text to her phone Saturday morning while we were sitting together at Tae Kwon Do. (Yes, we are that odd.)
"We are absolutely NOT getting a new puppy - http://Link_To_Some_Baby_Shelties_For_Sale_Close_By"Not long later, we had the following addition to our family.
Monday, January 18, 2010
So, back to the original question, what can we do to make sure neuroblastoma gets a bigger piece of the pie?
Many of you know that I sat on thethe Department of Defense's Peer Reviewed Medical Research Program (PRMRP) Neuroblastoma Research Panel. There were about 30 of us - researchers, physicians, and advocates. Our job was to help score the scientific merit of the neuroblastoma research that had been submitted. All of the research was scored, summarized, and prepared for the next stage of evaluations. However, from a scientific perspective this was likely the last time in would be scrutinized. The next step was to evaluate the military impact of the research and this was completed by the military.
Yes, I said, military impact.
After all, this is the entire point of the Department of Defense. But, don't be to dismayed. There are many opportunities for neuroblastoma research to impact the military. While sure, there are parents of children with neuroblastoma in the military that is not the strongest argument. In evaluating research we also look for things that impact other diseases. In other words, I looked for research that had far reach. The fact of the matter is that at this level (not just DOD, but NCI and others as well.) they are putting resources behind research that has the largest impact. If we are going to succeed we have to show that we will not only impact our own little NB world but that we can do so for other cancers as well. It is these "requirements" that help to ensure that dollars are doing the most good.
You may not like the philosophy. In fact, you may think it is really unfair. But, this is the way that it works and when it comes down big governemental units that are ferreting out funds they are looking to fund that which effects the most people. After all, that is how their success is measured. If we want major league funding we have to fill the stadium with lives.
Thankfully, there is little research that only impacts neuroblastoma. We can always learn things that impact other cancers and diseases. The trick is showing that in the proposal As our researchers are going out for these big dollars we need to ensure that they are keeping this in mind. They need to show a large impact if they are going to have any hope of obtaining this funding.
And now I come back to where I started, it comes down to our researchers. The better they show how their neuroblastoma research is going to impact the rest of the world, the better chance they have at getting funded, and the better chance neuroblastoma has at getting its piece of the pie.
Of course, we all have to remember that I am just a dad with no formal medical training what-so-ever. Furthermore, I have absolutely no decision making power. I am not an official voice and I certainly have no right r permission to speak on behalf of any of these organizations.
Still... If I was going to send in a funding proposal you can bet that I would be sending in a proposal with the best of both worlds - the neuroblastoma one and the wide world of cancer one.
Most of the time, purpose in the real world requires a lot of give and take - and a little insight never hurts.
Friday, January 15, 2010
The vision of the PRMRP is to identify and fund the best medical research to protect and support warfighters, veterans, and all beneficiaries and to eradicate diseases that impact these populations. The PRMRP challenges the scientific and clinical communities to address one of the FY10 congressionally directed topic areas with original ideas that foster new directions in basic science and translational research; novel product development leading to improved therapeutic or diagnostic tools, or improvements in clinical policies/guidelines; or clinical trials that address an immediate clinical need.
How does this impact neuroblastoma, you ask?
Well, for the second year in a row, neuroblastoma was selected as one of the 19 FY10 PRMRP Congressionally Directed Topic Areas. This means neuroblastoma has its shot at grabbing its chunk of $50 million dollars of research dough.
This is no small feat and while it is no guarantee of neuroblastoma funding it is an incredible opportunity for researchers studying neuroblastoma. It is yet another alternative for funding and, in a world with a weak economy and ever-shrinking funding pools, this is a huge coup for our researchers.
This opportunity is due in no small part to the work of another father of a child with neuroblastoma. While I still do not completely understand exactly what he does in Washington for a living, I do know that it was due to a large part of his effort that neuroblastoma was included in this exclusive list.
Thank you Gavin.
We all have a little bit more purpose today thanks to you.
Thursday, January 14, 2010
I know, lousy excuse. But, at least it is the truth.
Look, I know you are tired about hearing me whine about how busy I am all the time. I am even tired of listening to myself. The fact of the matter is that there simply aren't enough hours in the day. If I can just make it through to January 21st there just may be some light at the end of the tunnel.
My schedule was destroyed in December when I took on a project that had a tight deadline. It became worse when the deadline was moved up by 2 weeks. All of this was on top of a schedule that was already too jam packed.
For the record I already know. I have had stern lectures from both my wife and my mother. Yes, a deadly combination. But, I got it. I am too nice. I have got to learn to tell people no.
In the mean time, I have to continue to be a yes man until I finish these projects and then I promise. I will turn into a 'no' man.
Yep, probably won't happen.
Well, enough about poor little me. The week churns on and the kiddos have been busy at school and Tae Kwon Do. They have had two practices already this week and they are lined up for more double practices both tonight and on Saturday morning. This is all in preparation for their tournament in Austin scheduled the following weekend. It is a little overkill I admit. But, at this point, I still think it is doing them more good than harm. Plus, we are all continuing to have fun together. All for one and one for all, right?
There have been some attempted kidnappings in the area over the last week that have been quite the topic of conversation with the kiddos as of late. They seem quite positive that it must be the same person that broke into our cars. I guess the whole car incident has traumatized them a bit more than I had anticipated. I must admit, though, it is fun to watch their little brains work. Their imaginations are running wild and it is a bit difficult to keep them grounded with all of the excitement. It would be a lot easier if we lived in their world though. Wouldn't it be nice if all burglars and kidnappers wore black and white striped jumpers and the same person committed all of the crimes?
Kid brains are awesome.
They keep me full of purpose.
Tuesday, January 12, 2010
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.
Monday, January 11, 2010
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.
Friday, January 8, 2010
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.
Thursday, January 7, 2010
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.
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!
Wednesday, January 6, 2010
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.
Tuesday, January 5, 2010
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.
Monday, January 4, 2010
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.