Good morning! I guess you can already know that I did not write yesterday morning. That had nothing to do with not having anything to say and everything to do with having plenty to say and not nearly enough time in the day to spit it out. Right now, things are in fast forward and over the next few weeks I don't see any slowing down.
I think much of our feeling of extreme busyness has to do with the pre-olympic Tae Kwon Do schedule. Right now, we are practicing every day of the week. On most days though, we are only practicing for an hour or two. With the kiddos out of school that really doesn't seem to be adding that much time to the day. After all, they used to spend far more time than that in school. However, with practices occurring in the evening hours, it isn't replacing the time they were spending in school. It is chipping away at our evenings. With Lynley and I both working full time, it just means less time for us to decompress. Right now there are no relaxing summer evenings in the pool and ad hoc dinners on the grill. It is rush, rush, rush.
From the moment we get home from work it is about getting the kids geared up and planning out when, where, and how we will eat dinner. With those two tasks alone we are rarely finished by the kiddos normal bedtime. In fact, I can't remember a time we were home before 8:00PM. Add onto all of this the fact that we have guests in from out of town and you can begin to see why Lynley and I both are feeling the stress. Actually, it isn't the stress. It is the fact that we really just don't have any down time. On Tuesday night Lynley and I went out on a little mini date after the kiddos went to bed hoping to relax a little. We ended up having too much fun. We staying out too late and the next thing we knew we were already further behind for the next day. We are both hoping that this next week end will bring with it some relaxation.
The good news is that if you forget the stress of feeling like you don't have a moment to breathe we are actually doing pretty spectacularly. Kiddos are happy, nanny Stephanie is in the groove, and Lynley and I are doing great.
There are a few minor stresses though. In time for Sydney's scans we are seeing the usual rise in unexplained anomalies. Her latest ailment is a headache. They come and go but they are more frequent than Lynley and I are comfortable with. She also has had some fairly regular bouts of the hiccups. Take into consideration that this is scan season coupled with the fact that this is June (her diagnosis month) we are pretty skittish. Sure, we can come up with all kinds of excuses for the headaches but we can't get the fear of neuroblastoma out of our the forefront of our minds. Rational or not, it scares us. It is a good thing that scans are next week so we can put these headaches, or at least the fear of them, hopefully to rest.
Graham has an issue as well and we are working through it with him. He is going through a period of crying about everything. This is especially noticeable at Tae Kwon Do practice. He is being very dramatic and he is guilty of overacting with nearly every punch or kick that he receives. It is unlike him and we don't really know what is going on. He has always worn his feelings on his sleeve but it has grown out of control. I am guessing this is some type of call for attention. His sisters do a relatively good job of alienating him many times a day by playing "girl" games. He feels left out and unloved by his sisters. It is amazing how, if I begin spending more quality one-on-one time with him, his injuries become less severe and his emotions on the mat are far more under control.
This all makes me wonder. What should I be doing? How do I help him? How do you grow a great human being?
As usual, no damn manual.
Before I go, I would be remiss without mentioning Ainsley. She is her usual self. She is awesome. Just keep the sugar coming and her entire world is right.
Well, I had best be off. Purpose is already wrestling this morning.
Thursday, June 10, 2010
Tuesday, June 8, 2010
Pediatric cancer underfunded?
You have heard me complain on several occasions that childhood cancer funding is woefully inadequate. As of late, I have seen many take these complaints to politicians and various governmental agencies in an effort to secure more funding for our children. They often go in with pictures of bald children (our kiddos) and sad stories. That is followed by the distribution of facts like "childhood cancer is the number one disease killer of US children" and "breast cancer alone receives almost $580 million of research funding from the NCI where as all forms of childhood cancer, all 12 major groups comprising some 50+ childhood cancers, receive less the $190 million - COMBINED." All of this is the capped off with a demand that pediatric cancer deserves more funding.
Facts like that certainly illustrate the problem.
We argue and argue that pediatric cancer is underfunded. However, if you want to be any good at making a difference in funding you have to answer the question of:
"Compared to what?"
From a funding standpoint it is very rational to give breast cancer $680 million and pediatric cancer less that $190 million (as the NCI does). In a patient to patient comparison they are being funded similarly. In fact, in some cases using this methodology, some pediatric cancers are actually funded better than adult cancers like breast.
Furthermore, there are a lot more people that get breast cancer than get childhood cancer and if you want to get the most impact from your dollar then you have to spend your research dollars on projects that are going to affect the largest group of people possible. I mean think about it. Which sounds better on a government report?
A. I spent $1 billion and cured 200,000+ patients per year
B. I spent $1 billion and cured 13,000 patients per year
You see, this is the math that the government uses to fund cancer research. And, really, who can blame them? Who can argue with that logic?
I know depressing. But, if you are going to ever increase funding you have to understand this perspective. You have to develop arguments that take this philosophy into consideration and , most importantly, you have to ask for specific changes that work with the governmental funding equation.
Now, with all this being said, I genuinely believe that there are many ways to work within and around this philosophy. I can't get into them right now but I intend to cover them in the next few days. In the meantime, I want you to consider another target of your frustration.
Instead of complaining about the governmental funding of other cancers, I would like you to consider these facts.
Did you know that cancer killed more children in the US than AIDS, cystic fibrosis, muscular dystrophy, and asthma - COMBINED?
Wow, yes I know.
Now, did you know that the US government sends more money out of the country to support AIDS research and treatment per year than they spend on the entire NCI budget. The NCI's budget was roughly $4.6 billion last year. President Obama’s Fiscal Year (FY) 2011 federal budget request, released on February 1, includes an estimated $27.2 billion for combined domestic and global HIV/AIDS activities. Domestic HIV/AIDS is funded at $20.5 billion and globally at $6.7 billion.
How is the nation's number one killer of children doing now?
That is why purpose is so desperately needed.
Facts like that certainly illustrate the problem.
We argue and argue that pediatric cancer is underfunded. However, if you want to be any good at making a difference in funding you have to answer the question of:
"Compared to what?"
From a funding standpoint it is very rational to give breast cancer $680 million and pediatric cancer less that $190 million (as the NCI does). In a patient to patient comparison they are being funded similarly. In fact, in some cases using this methodology, some pediatric cancers are actually funded better than adult cancers like breast.
Furthermore, there are a lot more people that get breast cancer than get childhood cancer and if you want to get the most impact from your dollar then you have to spend your research dollars on projects that are going to affect the largest group of people possible. I mean think about it. Which sounds better on a government report?
A. I spent $1 billion and cured 200,000+ patients per year
B. I spent $1 billion and cured 13,000 patients per year
You see, this is the math that the government uses to fund cancer research. And, really, who can blame them? Who can argue with that logic?
I know depressing. But, if you are going to ever increase funding you have to understand this perspective. You have to develop arguments that take this philosophy into consideration and , most importantly, you have to ask for specific changes that work with the governmental funding equation.
Now, with all this being said, I genuinely believe that there are many ways to work within and around this philosophy. I can't get into them right now but I intend to cover them in the next few days. In the meantime, I want you to consider another target of your frustration.
Instead of complaining about the governmental funding of other cancers, I would like you to consider these facts.
Did you know that cancer killed more children in the US than AIDS, cystic fibrosis, muscular dystrophy, and asthma - COMBINED?
Wow, yes I know.
Now, did you know that the US government sends more money out of the country to support AIDS research and treatment per year than they spend on the entire NCI budget. The NCI's budget was roughly $4.6 billion last year. President Obama’s Fiscal Year (FY) 2011 federal budget request, released on February 1, includes an estimated $27.2 billion for combined domestic and global HIV/AIDS activities. Domestic HIV/AIDS is funded at $20.5 billion and globally at $6.7 billion.
How is the nation's number one killer of children doing now?
That is why purpose is so desperately needed.
Monday, June 7, 2010
A weekend to recover
This is a perfectly good example of a weekend that you need a couple of extra days to recover from.
Wow!
Sydney did not have a birthday day. She had a birthday weekend. It all began on Saturday, the day before her official birthday. To give you an idea of how busy it was, we began with playing hooky from a Tae Kwon Do tournament. Yes, I imagine we were probably the only ones on the team not to participate in this latest event. That was alright though as we had permission from Master Adrian.
Regardless, we were not there.
We were at home. Lynley had us in the salt mines scrubbing and cleaning our way out of unimmaculateness and into her realm of acceptability. You see not only would we have have guests over to her shrine of domestic perfection to celebrate Sydney's birthday but we would also be hosting her parents, Mimi and Papa, for the week in "cabana 1 (the guest house)". This also meant that there would be groceries to shop for and a significant amount of last minute birthday shopping for Didders (Sydney). Thankfully DeeDee agreed to entertain the kiddos at her house as I worked on the snappy end of Lynley's whip.
Believe it or not, by late morning we had finished our work and I was back in the good graces of the household dominatrix. We picked up the kiddos and headed to the airport.
Airport, Panera Bread for lunch, and back home we came. It was just in time as it would not be long before Sydney's best friends Jillian 1 and Jylian 2 arrive for a night prepubescent jollification. For those of you counting along that is 5 kiddos and 2 old farts that were now under our care.
The plan for the rest of the weekend was swimming, jewelry making, dinner, movie watching, sleeping, breakfast, water park, present opening, dinner number two and cake. Not an insurmountable task but also not something that a rational person would elect upon themselves.
The good news is that everything went off in a rather hitchless fashion. All of the kiddos had a wonderful time and I am pretty sure it was Sydney's best birthday ever. The kiddos all had a great time at the water park which was a great thing but, if I am being perfectly honest, I can tell you that I was almost entirely underwhelmed by Six Flags Hurricane Harbor. I was extremely disappointed by the quality of the park and lack of training with the staff. From food service to the the life guards, I was disappointed. It was as if this was the first day the water park had ever been opened (not this year, in all of history) and nobody had any experience in running a water park.
After spending time at places like NRH20 and Great Wolf Lodge I guess I have been spoiled. Yes, those places may have adequate service and mediocre food but they were 5 star establishments compared to Hurricane Harbor. And the quality of the rides, I was thoroughly disappointed. The kids, Lynley and I all preferred NRH20 or Great Wolf Lodge hands down. In fact, I would gladly play five times the ticket price at one of those places than go back to Hurricane Harbor.
Yuk.
But, the important part is that ultimately the kids had fun. Well that, and thanks to our supervision (no one else's for sure) they all survived.
By 4:00 we were all on our way home. A pretty good time must have been had as we lost two of the kiddos to sleep on the way home. That was followed by packing and rides home. We then topped the evening off with a family birthday party at home complete with Sydney's favorite home made spaghetti.
We went to bed early. Go figure.
Now I need a day or two to recharge my purpose batteries.
Wow!
Sydney did not have a birthday day. She had a birthday weekend. It all began on Saturday, the day before her official birthday. To give you an idea of how busy it was, we began with playing hooky from a Tae Kwon Do tournament. Yes, I imagine we were probably the only ones on the team not to participate in this latest event. That was alright though as we had permission from Master Adrian.
Regardless, we were not there.
We were at home. Lynley had us in the salt mines scrubbing and cleaning our way out of unimmaculateness and into her realm of acceptability. You see not only would we have have guests over to her shrine of domestic perfection to celebrate Sydney's birthday but we would also be hosting her parents, Mimi and Papa, for the week in "cabana 1 (the guest house)". This also meant that there would be groceries to shop for and a significant amount of last minute birthday shopping for Didders (Sydney). Thankfully DeeDee agreed to entertain the kiddos at her house as I worked on the snappy end of Lynley's whip.
Believe it or not, by late morning we had finished our work and I was back in the good graces of the household dominatrix. We picked up the kiddos and headed to the airport.
Airport, Panera Bread for lunch, and back home we came. It was just in time as it would not be long before Sydney's best friends Jillian 1 and Jylian 2 arrive for a night prepubescent jollification. For those of you counting along that is 5 kiddos and 2 old farts that were now under our care.
The plan for the rest of the weekend was swimming, jewelry making, dinner, movie watching, sleeping, breakfast, water park, present opening, dinner number two and cake. Not an insurmountable task but also not something that a rational person would elect upon themselves.
The good news is that everything went off in a rather hitchless fashion. All of the kiddos had a wonderful time and I am pretty sure it was Sydney's best birthday ever. The kiddos all had a great time at the water park which was a great thing but, if I am being perfectly honest, I can tell you that I was almost entirely underwhelmed by Six Flags Hurricane Harbor. I was extremely disappointed by the quality of the park and lack of training with the staff. From food service to the the life guards, I was disappointed. It was as if this was the first day the water park had ever been opened (not this year, in all of history) and nobody had any experience in running a water park.
After spending time at places like NRH20 and Great Wolf Lodge I guess I have been spoiled. Yes, those places may have adequate service and mediocre food but they were 5 star establishments compared to Hurricane Harbor. And the quality of the rides, I was thoroughly disappointed. The kids, Lynley and I all preferred NRH20 or Great Wolf Lodge hands down. In fact, I would gladly play five times the ticket price at one of those places than go back to Hurricane Harbor.
Yuk.
But, the important part is that ultimately the kids had fun. Well that, and thanks to our supervision (no one else's for sure) they all survived.
By 4:00 we were all on our way home. A pretty good time must have been had as we lost two of the kiddos to sleep on the way home. That was followed by packing and rides home. We then topped the evening off with a family birthday party at home complete with Sydney's favorite home made spaghetti.
We went to bed early. Go figure.
Now I need a day or two to recharge my purpose batteries.
Friday, June 4, 2010
Can sneaky good defeat sneaky bad?
Day two of Nanny Stephanie's reign is complete. Once again, she made it through relatively unharmed. Today it became even more clear that she has some twerp management skills.
The force is strong with this one.
Her experience as a kindergarten and first grade teacher over the last few years has prepared her well for the Jedi mind tricks she will most likely encounter in our alien world.
You see, my kids are sneaky. They are smart enough to never start out with blatant badness. They know that would never work. They lull you into bad behavior. It seems as that you have remained in control the whole time but eventually you find yourself realizing that you never had it at all. One moment you are happily watching over 3 delightful kiddos. Over time, though, you find yourself believing you are in charge and that not that much has changed but you can no longer think clearly for the noise and the kiddos are running amuck.
It is amazing how they do that. It is magical misbehavior.
It isn't that I think that my kids are especially bad. In fact, I think they are the opposite. However, I also know that they have an incredible talent for mayhem. In some ways, I fear for anyone entrusted to their care.
In this case, though, I am delightfully surprised. Miss Stephanie knows. It is clear that she has seen this all before and she has some mind tricks of her own. There were a couple of well placed time outs yesterday and the volume was well managed. She can clearly handle Graham and Ainsley. Sydney on the other hand is still befriending her. My eldest has not shown her dark side and I am interested to see how it is handled. If it is anything like the calm and decisive action that Miss Stephanie has handled Doofus and Doofus-er, I think she will fair well.
In fact, I may even learn a few tricks.
This is going well.
Ah, and don't forget. On Sunday, Sydney celebrates her 9th birthday.
Pretty, amazing huh. She has now officially had more life out of treatment for neuroblastoma than she had in it.
Yet, that took until the age of 9.
I must refocus my purpose.
The force is strong with this one.
Her experience as a kindergarten and first grade teacher over the last few years has prepared her well for the Jedi mind tricks she will most likely encounter in our alien world.
You see, my kids are sneaky. They are smart enough to never start out with blatant badness. They know that would never work. They lull you into bad behavior. It seems as that you have remained in control the whole time but eventually you find yourself realizing that you never had it at all. One moment you are happily watching over 3 delightful kiddos. Over time, though, you find yourself believing you are in charge and that not that much has changed but you can no longer think clearly for the noise and the kiddos are running amuck.
It is amazing how they do that. It is magical misbehavior.
It isn't that I think that my kids are especially bad. In fact, I think they are the opposite. However, I also know that they have an incredible talent for mayhem. In some ways, I fear for anyone entrusted to their care.
In this case, though, I am delightfully surprised. Miss Stephanie knows. It is clear that she has seen this all before and she has some mind tricks of her own. There were a couple of well placed time outs yesterday and the volume was well managed. She can clearly handle Graham and Ainsley. Sydney on the other hand is still befriending her. My eldest has not shown her dark side and I am interested to see how it is handled. If it is anything like the calm and decisive action that Miss Stephanie has handled Doofus and Doofus-er, I think she will fair well.
In fact, I may even learn a few tricks.
This is going well.
Ah, and don't forget. On Sunday, Sydney celebrates her 9th birthday.
Pretty, amazing huh. She has now officially had more life out of treatment for neuroblastoma than she had in it.
Yet, that took until the age of 9.
I must refocus my purpose.
Thursday, June 3, 2010
Still a shiny penny
Ainsley's destapling went off with out a hitch. In fact, we were in and out of Cook's ER in less than 10 minutes. Although there was a modicum of hair pulling when the staples were removed it was relatively painless. Even Ainsley felt that the hair pulling was less than a typical morning of hair brushing.
There wasn't much time to lolly gag and celebrate though. We had to rush home and eagerly await the arrival of Miss Stephanie, the newest nanny addition. The first day with Nanny Stephanie went perfectly smoothly. Graham was a bit whiny from his perceived girl abuse but I think it was probably just due to the significant estrogen imbalance in the home. Regardless, all had a pretty good day.
There were no incidents. However, I am curious to see how long that will last. It is kind of like the sheen on a new penny. Once it receives a little wear the shine goes away and the blemishes start to show. Twerps work exactly the same way.
The good news is that I will be around the house today so I ought to be able to keep a relatively good eye on the whole situation.
We will see what today brings.
Purpose awaits.
There wasn't much time to lolly gag and celebrate though. We had to rush home and eagerly await the arrival of Miss Stephanie, the newest nanny addition. The first day with Nanny Stephanie went perfectly smoothly. Graham was a bit whiny from his perceived girl abuse but I think it was probably just due to the significant estrogen imbalance in the home. Regardless, all had a pretty good day.
There were no incidents. However, I am curious to see how long that will last. It is kind of like the sheen on a new penny. Once it receives a little wear the shine goes away and the blemishes start to show. Twerps work exactly the same way.
The good news is that I will be around the house today so I ought to be able to keep a relatively good eye on the whole situation.
We will see what today brings.
Purpose awaits.
Wednesday, June 2, 2010
The Destapling
Well, even though it is summer today packs a ton of excitement. Today Ainsley has the staples removed from her head. I know, I know. The fun and excitement sure flew by quickly didn't it? She is pretty worried about the whole ordeal. Everyone has tried to reassure her that there would not be pain associated with the removal of her staples but it is about all she can talk about. Thank goodness we will be having it done first thing this morning so that she does not worry about it the remainder of the day. Like I said, it should be quick and harmless. We are hoping to be out of there by about 8:30 AM.
Today also marks the first day of Miss Stephanie, our new nanny. By school year she is a kindergarten teacher so she knows exactly how to care for (and discipline) our kiddos. We met with her last week and the kiddos absolutely fell in love with her. Sydney is extremely excited. I expect to day to go smoothly but I know there will be some bumps in the road. The first few days of any transition are tough and I know it will be that way as they learn her new rules. None the less, I am not expecting this to be too difficult.
Well, I had best be on the go. I have a morning full of Ainsley purpose followed by a meeting in Dallas full of childhood cancer purpose.
Today also marks the first day of Miss Stephanie, our new nanny. By school year she is a kindergarten teacher so she knows exactly how to care for (and discipline) our kiddos. We met with her last week and the kiddos absolutely fell in love with her. Sydney is extremely excited. I expect to day to go smoothly but I know there will be some bumps in the road. The first few days of any transition are tough and I know it will be that way as they learn her new rules. None the less, I am not expecting this to be too difficult.
Well, I had best be on the go. I have a morning full of Ainsley purpose followed by a meeting in Dallas full of childhood cancer purpose.
Tuesday, June 1, 2010
Summer has arrived
As of Friday, all of the kiddos have officially entered summer. Ainsley is now an official kindergartner, Graham is now in the first grade, and Sydney is the twerp elder entering third.
Who would have thought?
It is also important to note that all of the kiddos have also received their report cards. Ainsley's performance is still a complete unknown. I am afraid we will have to wait until next year to find out where she truly stands. We have not heard a peep since her mid year review in which she base lined every evaluable measure according to her teacher. All I can tell you for sure is that she was accepted to kindergarten and that, when compared to my other kiddos at the same age, she seems significantly ahead of where they were. Ainsley does receive some special bonus points too. She made it through an entire year without receiving a single yellow sticker. That is a sign of tremendously good behavior and a feat that her older siblings never came near. For comparisons sake, both Graham and Ainsley earned about 5 to 10 yellow stickers during their pre-k tenure.
Now, I know nobody saw that coming.
Graham does not receive grades per se. He receives check marks. Either he learned the evaluable skills or he did not. I am happy to report that he is chock full of check marks. He seems to have mastered all that was required of kindergarten. This summer we will be working on reading to help create a love for books. We will reward him with math as, like his Dad, this is what he loves the most. For those of you wondering how this generation compares to my own. I was officially taught multiplication in the third grade. Sydney was taught in the 2nd grade. With teacher Sydney, Graham and Ainsley have already been schooled. Yes, believe it or not, both Ainsley and Graham are learning the multiplication tables - and with success too.
Sydney received straight As. This little feat earned her a spot on the all A honor roll for an entire year. I think this is quite a feat and I am tremendously proud. Honestly, flashback 7 years ago and we did not even know if today would be a reality, much less the fact that she is a straight A student and a junior Olympic caliber athlete in Tae Kwon Do.
That is a far cry from stage IV neuroblastoma with roughly a 15 to 25% chance to survive 2 years.
To say that I am thankful is a gross understatement.
Sydney is already pretty hard in the books for 3rd grade. She has been practicing her cursive (a 3rd grade achievement) which she absolutely loves and we will be working with her to further establish her love of reading. Opposite of Graham, she will be punished with math. Thankfully, she is a great reader and we hope to nurture that as a lifelong passion.
That leaves us with the rest of summer and the opening of the Dungan pool. Our doors opened on Saturday morning.
I think the kids are still in the pool.
I had better go check.
As you can see, the summer will be full of purpose too.
Who would have thought?
It is also important to note that all of the kiddos have also received their report cards. Ainsley's performance is still a complete unknown. I am afraid we will have to wait until next year to find out where she truly stands. We have not heard a peep since her mid year review in which she base lined every evaluable measure according to her teacher. All I can tell you for sure is that she was accepted to kindergarten and that, when compared to my other kiddos at the same age, she seems significantly ahead of where they were. Ainsley does receive some special bonus points too. She made it through an entire year without receiving a single yellow sticker. That is a sign of tremendously good behavior and a feat that her older siblings never came near. For comparisons sake, both Graham and Ainsley earned about 5 to 10 yellow stickers during their pre-k tenure.
Now, I know nobody saw that coming.
Graham does not receive grades per se. He receives check marks. Either he learned the evaluable skills or he did not. I am happy to report that he is chock full of check marks. He seems to have mastered all that was required of kindergarten. This summer we will be working on reading to help create a love for books. We will reward him with math as, like his Dad, this is what he loves the most. For those of you wondering how this generation compares to my own. I was officially taught multiplication in the third grade. Sydney was taught in the 2nd grade. With teacher Sydney, Graham and Ainsley have already been schooled. Yes, believe it or not, both Ainsley and Graham are learning the multiplication tables - and with success too.
Sydney received straight As. This little feat earned her a spot on the all A honor roll for an entire year. I think this is quite a feat and I am tremendously proud. Honestly, flashback 7 years ago and we did not even know if today would be a reality, much less the fact that she is a straight A student and a junior Olympic caliber athlete in Tae Kwon Do.
That is a far cry from stage IV neuroblastoma with roughly a 15 to 25% chance to survive 2 years.
To say that I am thankful is a gross understatement.
Sydney is already pretty hard in the books for 3rd grade. She has been practicing her cursive (a 3rd grade achievement) which she absolutely loves and we will be working with her to further establish her love of reading. Opposite of Graham, she will be punished with math. Thankfully, she is a great reader and we hope to nurture that as a lifelong passion.
That leaves us with the rest of summer and the opening of the Dungan pool. Our doors opened on Saturday morning.
I think the kids are still in the pool.
I had better go check.
As you can see, the summer will be full of purpose too.
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