How come, every time we are approaching scans, my children become symptomatic? I guess I should be happy that they exhibit symptoms as we get closer to scan week instead of farther away but, none the less, it is like clockwork and it is always enough to cause distress. You might be thinking that Sydney could be aware of the upcoming scans and might be exhibiting these symptoms because of worry. Nope. I haven't even told her that scans were coming up in two weeks. In other words, these symptoms may be mental but not, at least, for that reason.
I could make some sarcastic remarks like "at least her legs aren't bothering her" or "at least her stomach isn't hurting", or "thank goodness she isn't pale". But, you all know me well enough by now to know that is pure sarcasm and all of which must be true. So what, really, is the point.? Do I think this is a relapse at this point? No. Am I scared, worried, and sleepless? Of course. It is only natural. Let's face it. The 1000 pound elephant is always in the room. Even normal is terrifying.
Perhaps the issue is that I become more sensitive as we encroach on scan week. Perhaps, my mind starts focusing on everything that could be wrong. Maybe I am the mental one? Maybe it isn't Sydney at all?
Anything is possible.
Purpose can clearly cause paranoia.
Tuesday, March 31, 2009
Monday, March 30, 2009
Weekend of questions
Good morning! Well, I am happy to report that the Dungans are all doing well. This weekend was fundamentally no different for us. There were lots of chores around the house and a fair amount of to keep me busy. Believe it or not I am working on two research grant proposals. What can I say, it is the research nerd side of me. The other surprise of the weekend was a high volume of calls regarding the ch14.18 antibody. Thankfully, I was able to get much of this done without giving up too much time with the kiddos. We had fun despite the seemingly hectic schedule and questionable weather.
The ch14.18 antibody is a truly difficult issue for many families right now. There are so many kiddos that are in that window where they need the antibody right now but can't get it because it is still under FDA hold. Families not quite at that point are concerned too. They are wondering whether they will be eligible for the antibody when it becomes available again. The most common questions I hear are (a) when will the antibody be available and (b) will I be eligible. I wish I could tell anybody that I had the answers. There just aren't any as of this moment. Unfortunately, I also don't know when there will be.
It is a very complicated topic. I have heard many raise their voice in protest that this must be an issue with the COG. That is a wrong assumption. There are issues involved that we as families have not even begun to consider. Believe it or not, reopening the trial and getting the drug into kids is not really under the control of the COG. While the COG is integrally involved in the decisions, it is ultimately up to the FDA, CTEP and the NCI to give them the go ahead to move forward. The COG will not be able to move until these other groups agree on the proper course of action given several different issues. Bottom line, the COG is as anxious to get this trial back open and this drug flowing back into high risk kids as we are. To a certain extent, their hands are tied.
So, what does all of this mean. Well, it means we don't know when the trial will be available or for whom. I am quite sure that the eligibility criteria will be even more strict than they were before the FDA closed the trial. The FDA will certainly require certain restrictions to protect our kids and to try and prevent further restrictions. While this is great for the safety of the kids that are eligible to receive the therapy, this will be a problem for those that find themselves ineligible. My suggestion is to position yourself. Find out if your child is likely to be eligible - ask your oncologist. Keep an ear out for news on when the trial will open and check to see if you will fit within that window of opportunity. If you don't see your child fitting into either one of these criteria then I would start investigating other alternatives. It is as simple as that. I wish it weren't but, if I was in that position, that is exactly what I would be doing.
It will take purpose.
The ch14.18 antibody is a truly difficult issue for many families right now. There are so many kiddos that are in that window where they need the antibody right now but can't get it because it is still under FDA hold. Families not quite at that point are concerned too. They are wondering whether they will be eligible for the antibody when it becomes available again. The most common questions I hear are (a) when will the antibody be available and (b) will I be eligible. I wish I could tell anybody that I had the answers. There just aren't any as of this moment. Unfortunately, I also don't know when there will be.
It is a very complicated topic. I have heard many raise their voice in protest that this must be an issue with the COG. That is a wrong assumption. There are issues involved that we as families have not even begun to consider. Believe it or not, reopening the trial and getting the drug into kids is not really under the control of the COG. While the COG is integrally involved in the decisions, it is ultimately up to the FDA, CTEP and the NCI to give them the go ahead to move forward. The COG will not be able to move until these other groups agree on the proper course of action given several different issues. Bottom line, the COG is as anxious to get this trial back open and this drug flowing back into high risk kids as we are. To a certain extent, their hands are tied.
So, what does all of this mean. Well, it means we don't know when the trial will be available or for whom. I am quite sure that the eligibility criteria will be even more strict than they were before the FDA closed the trial. The FDA will certainly require certain restrictions to protect our kids and to try and prevent further restrictions. While this is great for the safety of the kids that are eligible to receive the therapy, this will be a problem for those that find themselves ineligible. My suggestion is to position yourself. Find out if your child is likely to be eligible - ask your oncologist. Keep an ear out for news on when the trial will open and check to see if you will fit within that window of opportunity. If you don't see your child fitting into either one of these criteria then I would start investigating other alternatives. It is as simple as that. I wish it weren't but, if I was in that position, that is exactly what I would be doing.
It will take purpose.
Friday, March 27, 2009
Tae Kwon Twerps
It is official. I am now outnumbered and quite possibly out powered. My two eldest twerps have officially achieved their yellow stripe belt.
This is their first step in a long journey to take over Dungan household and quite possibly the world. It was a unique experience and a great learning one for the kiddos.
First off, this was a belt test for everyone that received an invitation. That meant that there were many people present of different skill levels. This was the first time that Sydney or Graham had seen this. Sydney was taken by total surprise. In fact, it caught her completely off guard and sent her into a state of complete nervousness. She was frozen with fear that people would laugh at her. That was an unwarranted concern as everyone was just as nervous and concerned about their own belt tests but that was of non consequence to her. It actually took a private conversation with Lynley out in the hallway to convince her to step on to the mat. For me, I liked this kind of challenge. This is exactly what Sydney needs. While I hated to see her struggle through this, I also knew it was the only way she would learn to overcome this type of adversity. It is one of those things you have to experience in order to learn to succeed.
Once on the mat, it was an utterly different story. First, I should probably paint the scene. There were approximately 20 Tae Kwon Do'ers participating in the belt test. Additionally there were probably another 40 to 50 people in the gallery watching the belt test. All of the instructors were in full dress. It was very official and very different from their normal class of 4 or 5 white belts. The pressure was on. If that was not difficult enough, Sydney, Graham, and another little boy were selected first for their belt tests. Their they stood, the 3 of them alone in the middle of the mat facing the 4 black belt instructors as everyone looked on. I would have been nervous. How about you?
Surprisingly, both Graham and Sydney were in the zone. From outward appearances you would have had no idea that they were performing for a room full of 60 people. Both Graham and Sydney did wonderfully. As usual, I could not have been more proud. Their technique was smack on. They were sharp. I was even amazed to see that both did an excellent job on their roundhouse kicks. Sydney's kick was six inches higher than I had seen it before and Graham had done away with the awkwardness that we had seen before and had instead replaced it with a respectable roundhouse kick. There was not a moment in which I thought they could have done better. I was one proud papa. At the culmination of their demonstration they instructors awarded and changed their belts. This was a defining moment for the Tae Kwon Twerps. They have learned that hard work pays and that you must face your fears. This is but two steps in the right direction on a very long road but one in which I am confident that they will be prepared to succeed.
I was not alone in purpose yesterday.
This is their first step in a long journey to take over Dungan household and quite possibly the world. It was a unique experience and a great learning one for the kiddos.
First off, this was a belt test for everyone that received an invitation. That meant that there were many people present of different skill levels. This was the first time that Sydney or Graham had seen this. Sydney was taken by total surprise. In fact, it caught her completely off guard and sent her into a state of complete nervousness. She was frozen with fear that people would laugh at her. That was an unwarranted concern as everyone was just as nervous and concerned about their own belt tests but that was of non consequence to her. It actually took a private conversation with Lynley out in the hallway to convince her to step on to the mat. For me, I liked this kind of challenge. This is exactly what Sydney needs. While I hated to see her struggle through this, I also knew it was the only way she would learn to overcome this type of adversity. It is one of those things you have to experience in order to learn to succeed.
Once on the mat, it was an utterly different story. First, I should probably paint the scene. There were approximately 20 Tae Kwon Do'ers participating in the belt test. Additionally there were probably another 40 to 50 people in the gallery watching the belt test. All of the instructors were in full dress. It was very official and very different from their normal class of 4 or 5 white belts. The pressure was on. If that was not difficult enough, Sydney, Graham, and another little boy were selected first for their belt tests. Their they stood, the 3 of them alone in the middle of the mat facing the 4 black belt instructors as everyone looked on. I would have been nervous. How about you?
Surprisingly, both Graham and Sydney were in the zone. From outward appearances you would have had no idea that they were performing for a room full of 60 people. Both Graham and Sydney did wonderfully. As usual, I could not have been more proud. Their technique was smack on. They were sharp. I was even amazed to see that both did an excellent job on their roundhouse kicks. Sydney's kick was six inches higher than I had seen it before and Graham had done away with the awkwardness that we had seen before and had instead replaced it with a respectable roundhouse kick. There was not a moment in which I thought they could have done better. I was one proud papa. At the culmination of their demonstration they instructors awarded and changed their belts. This was a defining moment for the Tae Kwon Twerps. They have learned that hard work pays and that you must face your fears. This is but two steps in the right direction on a very long road but one in which I am confident that they will be prepared to succeed.
I was not alone in purpose yesterday.
Thursday, March 26, 2009
My wife has left me
Good morning! My wife has left me. Okay, perhaps, that sounds a bit too strong. Actually, my wife left for Austin this morning with two men. Okay, perhaps that is still too misleading. My wife who had a technology conference in Austin this morning left very early this morning with two coworkers. I expect my blushing bride to be back in my loving arms later this evening. However, that still leaves me massively outnumbered by the small, but ever agile and sneaky, band of twerps.
Not to worry, though, twerp wrangling is my specialty - a gift if you will - and I am already planning my defense.
This is also the day of Sydney and Graham's belt test. Today they will be tested for the first time to see if they are deserving of a little color on their uniforms. I fully expect them both to be awarded their new yellow and white belts. For the most part they have both mastered their skills. Sydney is no doubtedly a weapon and I am surprised at the strength of her blows. She does have power. Her technique has improved greatly and, with the exception of have a fairly low roundhouse kick, she is perfect. Graham is doing well too. However, his roundhouse is still a bit awkward. It is a funny thing actually. We he first began learning his roundhouse they told him to turn his shoulders in an effort to get him to turn his hips. Unfortunately, he took this to mean his head. For the lives of everyone, we can't get him to stop turning his head around backwards. The best way to describe it is to tell you that, before Graham even begins to kick, his head is turned 180 degrees away from the target. He is literally looking behind himself. Regradless, I am hopefil that we will be able to get him through it. He seems to have mastered everything else. He knows his blocks, punches, other kicks and his korean words. Their test is at 5 to 5:30 and Lynley will be racing back to see them.
As a follow up from yesterday's entry, I heard from the mother of this other child with CRMO. She was at home with a sick child yesterday and told me that she would try to call today. I doubt that I will find a definitive answer that is undeniable proof of what this is in Sydney, but it could help me move in the right direction. None the less, it is good to hear that someone else has faced these issues. Perhaps there is a commonality.
It will be another full day of purpose.
Not to worry, though, twerp wrangling is my specialty - a gift if you will - and I am already planning my defense.
This is also the day of Sydney and Graham's belt test. Today they will be tested for the first time to see if they are deserving of a little color on their uniforms. I fully expect them both to be awarded their new yellow and white belts. For the most part they have both mastered their skills. Sydney is no doubtedly a weapon and I am surprised at the strength of her blows. She does have power. Her technique has improved greatly and, with the exception of have a fairly low roundhouse kick, she is perfect. Graham is doing well too. However, his roundhouse is still a bit awkward. It is a funny thing actually. We he first began learning his roundhouse they told him to turn his shoulders in an effort to get him to turn his hips. Unfortunately, he took this to mean his head. For the lives of everyone, we can't get him to stop turning his head around backwards. The best way to describe it is to tell you that, before Graham even begins to kick, his head is turned 180 degrees away from the target. He is literally looking behind himself. Regradless, I am hopefil that we will be able to get him through it. He seems to have mastered everything else. He knows his blocks, punches, other kicks and his korean words. Their test is at 5 to 5:30 and Lynley will be racing back to see them.
As a follow up from yesterday's entry, I heard from the mother of this other child with CRMO. She was at home with a sick child yesterday and told me that she would try to call today. I doubt that I will find a definitive answer that is undeniable proof of what this is in Sydney, but it could help me move in the right direction. None the less, it is good to hear that someone else has faced these issues. Perhaps there is a commonality.
It will be another full day of purpose.
Wednesday, March 25, 2009
CRMO: acronym for peace?
Good morning. This morning I find myself truly at a new place in Sydney's diagnosis of neuroblastoma. My mind is racing because of something that I thought I would never find (simply because I have talked to nearly every expert in the world to no avail) has shown up very unexpectedly on my doorstep.
It should not surprise you that not a single day goes by that I don't think about Sydney's neuroblastoma. I can't recall a day that I haven't thought about either the lesion on Sydney's arm or the original lesion that appeared on her leg that led us into the world of our supposed relapse over 4 years ago. I have been yet to conclusively prove that those lesions were (are) neuroblastoma or whether they were(are) something more benign. To this day it has been a complete unknown and while I have heard of other similar cases on occasion I have never been able to identify another child - at least one beyond rumor. I think the biggest reason for my consistent and ever present worry is the lack of knowing what the lesion is. I know it could be neuroblastoma. I also know that it could be something else. However, I have never had a definitive "what else." I have never has anything else to potentially call these lesions. I never had a differential diagnosis. I never had another child that I knew was similar. This only added to my worry.
Yesterday, very much by accident, I ran across a posting by another family who had a child with stage IV neuroblastoma who has also had multiple lesions very similar to Sydney's. This family has been through the multitudinous scans and the threats of relapse even more than Sydney and our family. Each time they received similar results. Bone scan and MRI showed an abnormal lesion or lesions. Everything else (marrows, MIBG) came back negative. Even after going through open biopsies, they were never able to confirm a neuroblastoma relapse. Sound familiar? Eventually they were diagnosed with CRMO or Chronic Recurrent Multi focal Osteomyelitis. It appears that this is somewhat of a catchall condition for something that is not completely understood. But, it is something. It is a name. It is a differential diagnosis. I have written the family to find out more about their diagnosis and history. It is still early but I would be lying if I did not say that I was excited by this. I don't know that this is what Sydney has but this is the first time I could ever identify a specific condition or a specific child which could help to explain Sydney's lesions.
CRMO could be some peace. It could be an answer. It could be an answer for my purpose.
It should not surprise you that not a single day goes by that I don't think about Sydney's neuroblastoma. I can't recall a day that I haven't thought about either the lesion on Sydney's arm or the original lesion that appeared on her leg that led us into the world of our supposed relapse over 4 years ago. I have been yet to conclusively prove that those lesions were (are) neuroblastoma or whether they were(are) something more benign. To this day it has been a complete unknown and while I have heard of other similar cases on occasion I have never been able to identify another child - at least one beyond rumor. I think the biggest reason for my consistent and ever present worry is the lack of knowing what the lesion is. I know it could be neuroblastoma. I also know that it could be something else. However, I have never had a definitive "what else." I have never has anything else to potentially call these lesions. I never had a differential diagnosis. I never had another child that I knew was similar. This only added to my worry.
Yesterday, very much by accident, I ran across a posting by another family who had a child with stage IV neuroblastoma who has also had multiple lesions very similar to Sydney's. This family has been through the multitudinous scans and the threats of relapse even more than Sydney and our family. Each time they received similar results. Bone scan and MRI showed an abnormal lesion or lesions. Everything else (marrows, MIBG) came back negative. Even after going through open biopsies, they were never able to confirm a neuroblastoma relapse. Sound familiar? Eventually they were diagnosed with CRMO or Chronic Recurrent Multi focal Osteomyelitis. It appears that this is somewhat of a catchall condition for something that is not completely understood. But, it is something. It is a name. It is a differential diagnosis. I have written the family to find out more about their diagnosis and history. It is still early but I would be lying if I did not say that I was excited by this. I don't know that this is what Sydney has but this is the first time I could ever identify a specific condition or a specific child which could help to explain Sydney's lesions.
CRMO could be some peace. It could be an answer. It could be an answer for my purpose.
Tuesday, March 24, 2009
The belt racket
Good morning! Well the kiddos went back to school yesterday. I am happy to report that they all came back with a smile on their faces and happiness to be back in the swing of things. I know that is wonderful but I would still love to hear that they missed not being with their Mommy and Daddy and they pined away for us for at least a few minutes. What can I say? I am a sappy dude.
After school we all went to Tae Kwon Do and tumbling. I am extremely proud to announce that both Graham and Sydney have been selected for their belt tests to go to the next level. I should say I "was" proud to see them be invited to their belt testing. That was, of course, until I read the fine print which also stated that there would be a $50 per twerp fee for their respective belt tests. Wow, what a racket! I was less than pleased to see that but, none the less, I am happy to see them move up. I guess you could say I have a $100 smile.
I am still working on pictures of our rock climbing adventures at the school. It seems the camera has gone missing. None the less, once we dig it up I will post them.
For now, it is off to a very important day of purpose.
After school we all went to Tae Kwon Do and tumbling. I am extremely proud to announce that both Graham and Sydney have been selected for their belt tests to go to the next level. I should say I "was" proud to see them be invited to their belt testing. That was, of course, until I read the fine print which also stated that there would be a $50 per twerp fee for their respective belt tests. Wow, what a racket! I was less than pleased to see that but, none the less, I am happy to see them move up. I guess you could say I have a $100 smile.
I am still working on pictures of our rock climbing adventures at the school. It seems the camera has gone missing. None the less, once we dig it up I will post them.
For now, it is off to a very important day of purpose.
Monday, March 23, 2009
Animals at the zoo?
Good morning! It has been a busy weekend around the Dungan household. The last spring break weekend was capped off with a family trip to the zoo. Honestly, I love going to the zoo. Frankly, we all do. We have a great time. You may think that the kiddos love to go to see the animals. Nope. In fact, I think they are more entertained by the squirrels than the cheetahs, the lions, or the elephants. Nope, my kiddos go to the zoo to ride the train, to play in the fun house, and, most importantly, to rock climb. I think this is a very important note for any of you that are looking in to starting you own zoo. It apparently has nothing to do with the animals or the conservation effort. Who would've thought. I have a few pictures that I will try to post a bit later when I have some more time.
On a side note I have received many questions regarding my post on Friday. I just wanted to let everyone know who was interested that there is a series of articles on antibodies on the CNCF website (http://www.nbhope.org) . They provide a pretty good overview and will give you a thorough understanding of what you need to know as a parent. They can be found here:
Purpose and a pen, watch out.
On a side note I have received many questions regarding my post on Friday. I just wanted to let everyone know who was interested that there is a series of articles on antibodies on the CNCF website (http://www.nbhope.org) . They provide a pretty good overview and will give you a thorough understanding of what you need to know as a parent. They can be found here:
Purpose and a pen, watch out.
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