I have been asked by many people, what exactly is this trial that is being funded by Lunch for a Cure's "lunch money" this year? I have volumes on that. In fact, I have everything you would need to move an important clinical trial in neuroblastoma forward- strong preclinical data, an experienced research team, a consortium of hospitals dedicated to getting the trial open, and incredible scientific reviews.
But, before I begin to delve into all of that, I want you to truly understand why this clinical trail is so important to children with neuroblastoma. So, for that, I want you to take a moment to imagine.
Imagine that your child has neuroblastoma.
Imagine that you have been told that your child would most likely die.
It is a horrible, gut wrenching feeling and one that, unless you have been in that situation, I can guarantee is far worse than anything your mind or heart can conjure. For better or worse, it is truly unimaginable. None the less, I ask you to try.
Are you there yet? Can you feel it? Do you feel like all of the air has been squeezed out of you?
Now, I want you to imagine your child enduring rounds and rounds of high dose chemotherapy, multiple surgeries, a stem cell transplant (or 2), and radiation - and this is only what the first 6 months have brought your child.
The good news is that all of this treatment is working. Your child is better. Your child isn't cured but he or she is winning. There is light at the end of the tunnel.
There is hope.
After all, the neuroblastoma research world has just had an important discovery. We have a drug that has been proven to increase survival by 20%. This is the lifeline. This is the drug that can make the difference for your child. This is the potentially cure cementing answer you are looking for. It will tip the scales.
But, now I want you to imagine that your child can't have this drug.
He or she just can't. Your child won't get this drug and your child won't have a 20% better chance at survival.
Can you feel it now?
You see in this world, the real world, this happens everyday. There are children just like yours today that can't get this drug. Their doctor can't prescribe it and they can't buy it. It doesn't matter who you are, who you know, or how much money you have.
There are all kinds of complicated reasons why these children can't get the drug. They can't have it because they weren't on the right clinical trial. They can't have it because it is not FDA approved. They can't get it because of a limited supply. They can't get it because they ran out of time. They can't have it because they had to much disease at a particular point in time. They can't have it because they relapsed. There are literally hundreds of potential reasons they can't have it.
It is sad.
And children are dying because they cant get this drug - today, in the United States of America.
The clinical trial that Lunch for a Cure is funding will provide this drug to many children that can't get it. Furthermore, it also seeks to improve its efficacy and decrease its side effects.
It will saves lives.
When is the last time you knew that giving up your lunch for one day would actually save a child's life? You can't, can you. This time it will.
Now, for those of you wanting to read more about this trial, go to http://LunchforaCure.org/2010Funding
For those of you that wanting to give up a lunch to help fund this clinical trial, go to https://lunchforacure.org/Donate.aspx
For those of you that want to make a real big difference, ask all of your friends to do the same.
This is purpose - magnified.
Wednesday, November 10, 2010
Tuesday, November 9, 2010
Now that is what I am talking about.
Well, the high Ainsley has had us riding on has finally come crashing down. It appears the model student has come home with a yellow sticker - a mark of minor misbehavior. While it is still not nearly as bad as I have come to expect from her on a daily basis it is a clear indication that the child that we drop off at school every day is most likely the same child answering to the name of Ainsley in Mrs. Lewis' class. For a long while we had doubted it, but given yesterday's evidence, I think we can conclude it is probably the same child.
So, what did she do?
Well, in all due honesty it was not even the exciting. She didn't try and slap the teacher or one of the students on the back of the head. She didn't climb the bookcases. She didn't scream 'No' to her elders at the top of her lungs. They wasn't found under her table chowing down on candy. She wasn't even calling anyone a dummy.
All of these behaviors, by the way, are things that we have seen or heard many times before.
No, Ainsley got in trouble for talking and doodling (of all things) when she wasn't supposed to. While I was just as strict with her as I would have been with any of my other children when they brought home a yellow sticker, it was probably overkill for her transgressions. She did not get any ice cream when we stopped on the way home to celebrate straight As on Sydney's progress report. She also had to spend 30 minutes up in her room while the other kiddos played outside. Of course, there was also a stern talking to with mean Mommy and mean Daddy voices.
Normally, I would feel a sense of accomplishment. After all, it takes mistakes like this to create teachable moments. All of this, and yet, I still feel a bit deflated.
Doodling, really?
Of all of the good things (I mean bad) Ainsley could have gotten in trouble for and I had to give her a lecture on jabbering and doodling.
I am totally disappointed. I expect a lot better misbehavior out of her. I won't tolerate these diddly "doodling" reprimands. I have come to expect much more of her. If she is going to mess up she had better step up her game. That is still not the Ainsley we know.
Kinda backwards purpose, isn't it?
So, what did she do?
Well, in all due honesty it was not even the exciting. She didn't try and slap the teacher or one of the students on the back of the head. She didn't climb the bookcases. She didn't scream 'No' to her elders at the top of her lungs. They wasn't found under her table chowing down on candy. She wasn't even calling anyone a dummy.
All of these behaviors, by the way, are things that we have seen or heard many times before.
No, Ainsley got in trouble for talking and doodling (of all things) when she wasn't supposed to. While I was just as strict with her as I would have been with any of my other children when they brought home a yellow sticker, it was probably overkill for her transgressions. She did not get any ice cream when we stopped on the way home to celebrate straight As on Sydney's progress report. She also had to spend 30 minutes up in her room while the other kiddos played outside. Of course, there was also a stern talking to with mean Mommy and mean Daddy voices.
Normally, I would feel a sense of accomplishment. After all, it takes mistakes like this to create teachable moments. All of this, and yet, I still feel a bit deflated.
Doodling, really?
Of all of the good things (I mean bad) Ainsley could have gotten in trouble for and I had to give her a lecture on jabbering and doodling.
I am totally disappointed. I expect a lot better misbehavior out of her. I won't tolerate these diddly "doodling" reprimands. I have come to expect much more of her. If she is going to mess up she had better step up her game. That is still not the Ainsley we know.
Kinda backwards purpose, isn't it?
Monday, November 8, 2010
A 3 day weekend?
Ahhhh - a brand new week.... After a 3 day weekend you might think I would be fully relaxed. Nope, you have it backwards. I am looking forward to a nice work week to relax. Factor in the normal wear and tear the twerplets bestow upon their loving father and then consider the audacity of my mean slave driving wife (I love you dear) and you can begin to understand the level of refreshment that can be gained from a relaxing day at work.
A 3 day weekend, you ask?
Yep, Friday was Grandparent's Day at Southwest Christian School. That meant a 2 hour program followed by early release. That also meant no work for Daddo. Now, the program was almost as good as you could expect a 2 hour program of singing and acting can be as delivered by hundreds of kindergarten through 6th graders. Like you would probably feel - my kids were awesome - but I could have done without all of those other kiddos. That could have shaved off about an hour and 45 minutes right there. None the less, the messenging was pretty good, we walked away with smiles and I am quite sure that SCS walked away with a fair chunk of Grandparent change.
That was the purpose, right?
That evening was filled with the Wipe Out Kids' Cancer Gala - yes, another opportunity to get out our checkbooks. However, this one was special. Our very own Dr. Granger received an award for her medical achievements in neuroblastoma. Lynley and I were proud. We felt as though we had raised her from just a baby pediatric oncologist. The award was well-deserved and points to the incredible work she is doing for the neuroblastoma community. I am only hopeful that news of her great work can inspire some local neuroblastoma awareness and philanthropy.
Some of you may ask. You are part of the Neuroblastoma Foundation, why are you out hawking the goodness of another pediatric cancer foundation. Well, I am not a foundation bigot. If I believe in the work you are doing, I support you. In this case, I believe in what they are doing and, while they do not focus specifically on neuroblastoma, they are a great organization for general pediatric cancer. Mark my words. This will be the next general pediatric cancer leader in North America. One day this name will be synonymous with the big names like Susan G. Komen for the Cure, LiveStrong, and ACS.
The rest of the weekend was just plain hard work that no one really wants to hear about. The good news is that I got a bunch done on Lunch for a Cure, I finished all of the laundry, and I began the great workroom declutter (a huge job).
Now, it is back to serious work - only 4 more days to submit your recipes - https://lunchforacure.org/recipe
Purpose is well under way!
A 3 day weekend, you ask?
Yep, Friday was Grandparent's Day at Southwest Christian School. That meant a 2 hour program followed by early release. That also meant no work for Daddo. Now, the program was almost as good as you could expect a 2 hour program of singing and acting can be as delivered by hundreds of kindergarten through 6th graders. Like you would probably feel - my kids were awesome - but I could have done without all of those other kiddos. That could have shaved off about an hour and 45 minutes right there. None the less, the messenging was pretty good, we walked away with smiles and I am quite sure that SCS walked away with a fair chunk of Grandparent change.
That was the purpose, right?
That evening was filled with the Wipe Out Kids' Cancer Gala - yes, another opportunity to get out our checkbooks. However, this one was special. Our very own Dr. Granger received an award for her medical achievements in neuroblastoma. Lynley and I were proud. We felt as though we had raised her from just a baby pediatric oncologist. The award was well-deserved and points to the incredible work she is doing for the neuroblastoma community. I am only hopeful that news of her great work can inspire some local neuroblastoma awareness and philanthropy.
Some of you may ask. You are part of the Neuroblastoma Foundation, why are you out hawking the goodness of another pediatric cancer foundation. Well, I am not a foundation bigot. If I believe in the work you are doing, I support you. In this case, I believe in what they are doing and, while they do not focus specifically on neuroblastoma, they are a great organization for general pediatric cancer. Mark my words. This will be the next general pediatric cancer leader in North America. One day this name will be synonymous with the big names like Susan G. Komen for the Cure, LiveStrong, and ACS.
The rest of the weekend was just plain hard work that no one really wants to hear about. The good news is that I got a bunch done on Lunch for a Cure, I finished all of the laundry, and I began the great workroom declutter (a huge job).
Now, it is back to serious work - only 4 more days to submit your recipes - https://lunchforacure.org/recipe
Purpose is well under way!
Friday, November 5, 2010
Win an apple iPad for a family of a child with neuroblastoma for free
I have been told by way to many people that they had no idea that they could win a child with neuroblastoma an apple iPad just for submitting a recipe to the Lunch for a Cure Cookbook.
Well, YOU CAN!
It is simple.
So, if you know of a child with neuroblastoma, go to http://LunchforaCure.org/recipe and submit a recipe in their honor.
Hurry, space is filling up and time is running out! The drawing will be held on Thanksgiving Day but we will only be accepting recipes for 7 more days!!
Now, that is purpose in the form of easy!
Well, YOU CAN!
It is simple.
- Go to http://LunchforaCure.org/recipe
- Select a child with neuroblastoma (or add one if he or she not listed)
- Enter your recipe.
So, if you know of a child with neuroblastoma, go to http://LunchforaCure.org/recipe and submit a recipe in their honor.
Hurry, space is filling up and time is running out! The drawing will be held on Thanksgiving Day but we will only be accepting recipes for 7 more days!!
Now, that is purpose in the form of easy!
Wednesday, November 3, 2010
Twitter winner revealed
@JakeyBro was the grand prize winner of our all expense paid trip to Chili's (as long as it was under $25) during our little Twitter contest on Monday. This may seem like it is bad news for those of you vying for the luxurious experience of dining out at Chili's but, you would be wrong. It turns out that Jake felt like it was inappropriate for him to win and, thus, has graciously donated the gift card back to the foundation as long as I use it creatively.
So, it turns out that is a good deal for you, but less so for me. Now, I have to be creative.
And, I had thought I was doing that in the first place...
So, get ready for action, in a day or so I am going to come up with something so exciting and fun that your mouth will be watering in anticipation of its greatness.
At least, I think.
The other thing I noticed with this little exercise is that the readers of my diary are, for the most part, twitter challenged. In the end, @NBFoundation received some 20 new twitter followers - not bad for a gift certificate I found cleaning out my desk and the fact that it was only mentioned on my blog. The funny thing about it was that I received over 50 email from people that had spotted me in the picture and were looking for a way to cheat the system. I am sorry to all of you. It was a twitter contest and, while I appreciate you taking the time to email me the answer, only twitter entries counted.
Helpful nugget of the day - Sign up on twitter - its fun!
Oh, and another helpful nugget - Hurry up and submit your recipes for the Lunch for a Cure Cookbook. It is filling up fast.
It is getting to be that time of the year when everyone gets a little purpose in their stocking.
So, it turns out that is a good deal for you, but less so for me. Now, I have to be creative.
And, I had thought I was doing that in the first place...
So, get ready for action, in a day or so I am going to come up with something so exciting and fun that your mouth will be watering in anticipation of its greatness.
At least, I think.
The other thing I noticed with this little exercise is that the readers of my diary are, for the most part, twitter challenged. In the end, @NBFoundation received some 20 new twitter followers - not bad for a gift certificate I found cleaning out my desk and the fact that it was only mentioned on my blog. The funny thing about it was that I received over 50 email from people that had spotted me in the picture and were looking for a way to cheat the system. I am sorry to all of you. It was a twitter contest and, while I appreciate you taking the time to email me the answer, only twitter entries counted.
Helpful nugget of the day - Sign up on twitter - its fun!
Oh, and another helpful nugget - Hurry up and submit your recipes for the Lunch for a Cure Cookbook. It is filling up fast.
It is getting to be that time of the year when everyone gets a little purpose in their stocking.
Tuesday, November 2, 2010
Oh I am such a bad parent!
I have got the shutters on my front windows closed. I am pretty sure CPS has me under surveillance and I don't want them peeking in. This time though, I know full well that it was my own parenting that got me into this predicament.
Did I go too far?
Every child has their issues. Yes, even my perfect little munchkins forget to do things that they know that they should or shouldn't be doing. For Ainsley, the issue is eating candy. She eats too much. We all know that. For Graham - well - I take that back, Graham is perfect. He is flawless. Forget about him. But, Sydney, whoa, she has some issues. (You know I am kidding, right?) Regardless, she does have a few issues and it seems it was hers that led me down this path.
You see, last night after dinner she was complaining about a red mark on her forehead. Yes, even at the tender age of 9 she has somehow already developed the girly obsession of physical perfection. Flawless alabaster skin is important to her and she is always asking us about how much we notice certain perceived imperfections. Generally, these are always redness and usually a result of her rubbing them. There is never anything else that is discernible.
So, anyway, last night she inquired about a red blotch on her forehead. It was barely noticeable - so much so, that, to this very moment, I have doubts that anything truly existed. Regardless, during our discussion I noticed that her teeth were dirty. While I am sure this was a direct result of the dinner she just finished, it was certainly complicated by her lack of brushing. Getting her to brush is like pulling teeth (even the threat of it seems not to work.) It is her issue. Every child has one and Sydney falls victim to not brushing enough.
So.........
When she asked me about her forehead, her teeth were on my mind. I told her the mark on her forehead was because she wasn't brushing her teeth. She looked at me inquisitively. In the most strraight faced manner a could muster I told her "seriously, go ask your mother." She did and guess what? Lynley backed me up. "You bet Sydney, the mark on your forehead is like an indicator light. You haven't been brushing your teeth."
Hook, line and sinker.
We had her. The next thing we knew she was upstairs brushing her teeth.
Before bed she asked if the mark was gone. Seeing her teeth were fresh and clean I assured her that it was. She went to sleep happily.
Now, you may think Sydney is gullible. She is a bit. When I told her the word "gullible" was not in the dictionary she looked it up. It turned out I was right. Gullible isn't in the dictionary. I can prove it. Look it up here.
Yes, I know, I am going to hell. But, that is only if CPS doesn't get me first.
Purpose is just like a cat, there is always more than one way to skin them.
Did I go too far?
Every child has their issues. Yes, even my perfect little munchkins forget to do things that they know that they should or shouldn't be doing. For Ainsley, the issue is eating candy. She eats too much. We all know that. For Graham - well - I take that back, Graham is perfect. He is flawless. Forget about him. But, Sydney, whoa, she has some issues. (You know I am kidding, right?) Regardless, she does have a few issues and it seems it was hers that led me down this path.
You see, last night after dinner she was complaining about a red mark on her forehead. Yes, even at the tender age of 9 she has somehow already developed the girly obsession of physical perfection. Flawless alabaster skin is important to her and she is always asking us about how much we notice certain perceived imperfections. Generally, these are always redness and usually a result of her rubbing them. There is never anything else that is discernible.
So, anyway, last night she inquired about a red blotch on her forehead. It was barely noticeable - so much so, that, to this very moment, I have doubts that anything truly existed. Regardless, during our discussion I noticed that her teeth were dirty. While I am sure this was a direct result of the dinner she just finished, it was certainly complicated by her lack of brushing. Getting her to brush is like pulling teeth (even the threat of it seems not to work.) It is her issue. Every child has one and Sydney falls victim to not brushing enough.
So.........
When she asked me about her forehead, her teeth were on my mind. I told her the mark on her forehead was because she wasn't brushing her teeth. She looked at me inquisitively. In the most strraight faced manner a could muster I told her "seriously, go ask your mother." She did and guess what? Lynley backed me up. "You bet Sydney, the mark on your forehead is like an indicator light. You haven't been brushing your teeth."
Hook, line and sinker.
We had her. The next thing we knew she was upstairs brushing her teeth.
Before bed she asked if the mark was gone. Seeing her teeth were fresh and clean I assured her that it was. She went to sleep happily.
Now, you may think Sydney is gullible. She is a bit. When I told her the word "gullible" was not in the dictionary she looked it up. It turned out I was right. Gullible isn't in the dictionary. I can prove it. Look it up here.
Yes, I know, I am going to hell. But, that is only if CPS doesn't get me first.
Purpose is just like a cat, there is always more than one way to skin them.
Monday, November 1, 2010
Halloween 2010 & Twitter Contest
Happy day after Halloween. I am happy to report that the kiddos all received a gullet full of candy and declared the holiday a complete success. As you can see below, they brought out their Halloween finest.
Pictured from left to right are Ainsley, Graham and Sydney with Aunt Jenny peeking over their shoulders. But, that is not the tricky part. Can you find me?
Twitter Contest!
Become a follower of @NBFoundation and tweet my location in the picture with the tag #WheresMarko before 8:00 AM CST on November 2, 2010 and you will be eligible to win a $25 gift certificate to Chili's. One winner will be drawn at random from the correct entries.
(example: Mark is hiding in the pumpkin #WheresMarko)
New to Twitter? Never heard of it? Click here for instructions on how to get started.
Now, onto 2 funny quotes from Halloween:
When Sydney was asked by people handing out candy what her costume was she explained that she was a "jail fairy"
The wing on Ainsley's costume kept flopping over giving the impression of a broken wing. She described herself as a "broken angel."
Pictured from left to right are Ainsley, Graham and Sydney with Aunt Jenny peeking over their shoulders. But, that is not the tricky part. Can you find me?Twitter Contest!
Become a follower of @NBFoundation and tweet my location in the picture with the tag #WheresMarko before 8:00 AM CST on November 2, 2010 and you will be eligible to win a $25 gift certificate to Chili's. One winner will be drawn at random from the correct entries.
(example: Mark is hiding in the pumpkin #WheresMarko)
New to Twitter? Never heard of it? Click here for instructions on how to get started.
Now, onto 2 funny quotes from Halloween:
When Sydney was asked by people handing out candy what her costume was she explained that she was a "jail fairy"
The wing on Ainsley's costume kept flopping over giving the impression of a broken wing. She described herself as a "broken angel."
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