Have you seen the front of the Lunch for a Cure website?
$997, 375.96
That is the amount that we have raised online for Lunch for a Cure. Will today be the day that we break the $1 million dollar mark? Will we surpass it before year end?
Think about it - $1 million dollars is a lot of lunches. We have come a long way and that is a lot of research that simply would not have been completed had it not been for all of that lunch money. Looking back over the years it is really pretty incredible. We have helped to put over 100 kids on clinical trial that simply would not have been had it not been for our effort. Best yet, many of those children are still surviving today. You have to wonder, would they still be here had it not been for our lunches? Would they still be alive if it were not for the clinical trials that we funded?
Our lunches did not stop there, we did a mountain of other important work as well. When drug supplies disappeared in clinical trials, it was our lunch money that quietly and magically made them reappear again. In fact, their are kids continuing to get cancer fighting drugs today that are only doing so because we (you and I and all of our friends) decided to give up our lunches.
To me, that is incredible. Think about it. If your child was sick and the only hope was in a new experimental drug whose supply had run out, how would you feel? If there was a drug that could save your child's life but you could not get it, what would you think? You can't get them at the pharmacy. You can;t even get them directly from the pharmaceutical company - not even if your child's life depended upon it. You can only get most of these drugs through clinical trial and what if all of the drug for that trial had expired. How would you feel? What would you think?
That is the reality that many kids with neuroblastoma have faced. But, because of our lunches, it is not the reality that they had to live. We got them the drugs. We made it possible to finish the clinical trials.
And, that is why this lunch money is so important.
It saves lives.
It searches for the cure.
It has purpose!
Thursday, December 30, 2010
Tuesday, December 28, 2010
A lump of coal in my stocking?
Well, it turns out that our "Merry Freakin' Christmas" turned out to be pretty good after all. In the last few days and hours leading up to the point that the fat man (yes, he has not been doing his P90X) left stockings and toys for the kiddos they took a turn for the better. While I can not say that they were perfect, they were certainly as excellent as a band of elbow high sibling twerplets could be after spending a week together. Yes, Christmas went off without nary a hitch and everyone was as happy as could be. Sydney received a laptop, Graham an iPod touch, and Ainsley was bestowed 3 toy Volkswagen bugs (don't ask). The point is that they could have been no happier. For the grandparents it was iPads and for Lynley it was her much coveted Slingbox.
Everything was wonderful.
Well, it was wonderful for everyone but me - the grinch. Santa did not bring me what I wanted. In fact, what he brought me was worse that a lump of coal. He brought me a burst pipe in the guest house. If that was not bad enough, our clever plumber was able to find 2 other leaks.
$3000.00 later I found myself wondering if this was a sign that I should give up technology and go to plumber school.
All in all, I suppose it could have been much worse. In fact, all things considered, my family is together, the kiddos are happy, and Sydney has not been thrust back into the cancer world. Given that scenario, I guess it is about the best Christmas I could have had.
Christmas is all about perspective - and purpose.
Everything was wonderful.
Well, it was wonderful for everyone but me - the grinch. Santa did not bring me what I wanted. In fact, what he brought me was worse that a lump of coal. He brought me a burst pipe in the guest house. If that was not bad enough, our clever plumber was able to find 2 other leaks.
$3000.00 later I found myself wondering if this was a sign that I should give up technology and go to plumber school.
All in all, I suppose it could have been much worse. In fact, all things considered, my family is together, the kiddos are happy, and Sydney has not been thrust back into the cancer world. Given that scenario, I guess it is about the best Christmas I could have had.
Christmas is all about perspective - and purpose.
Thursday, December 23, 2010
Merry Freakin' Christmas!?!?
First, please, don't forget to give up your lunch! It is the only way that we can fund this important clinical trial. We are depending on you and your friends! - https://LunchforaCure.org/donate.aspx
On another note, I am really surprised this Christmas. I have expected my children to be much better behaved. After all, Santa Claus could be looking at them at any given moment. Consider the fact that I have taken off the week from work to be with them and I can tell you first hand that I have witnessed Santa observing them and he is none too impressed.
My children will be receiving coal for Christmas.
I know, in light of last weeks events you may expect Santa to be soft. Perhaps he could understand the impact stress has put on their gentle psyches. But no, he has had it.
I really can't blame Graham and Ainsley too much. No, its seems that their not so benevolent leader is the instigator of their twerp revolt. They are just imitating the master. I know of no other way to put it. Sydney is pissed. (I know, sorry Grammy, but there is no better word to encapsulate her condition) She is pissed about waking up. She is pissed about eating breakfast. She is pissed about going to ninja day. She is pissed about going to the movies. In fact, I can't think of a single thing that Sydney is not pissed about.
So, the question is, why?
This certainly is not Sydney. While I can tell you (probably even without getting hit) that, while she can have some of her mother's angst (her mother who is a beautiful, kind, intelligent and loving spouse and mother), she is generally a pretty happy little girl. There is a lot in life that she finds tremendous joy in. For instance, she loves crafts and she loves to read. She loves to play outside and she loves to cuddle with her daddy in the morning. There is usually a lot that she is happy about and the great thing about it is that it is simple things that seem to bring her the most joy.
Unfortunately, over the last week, none of that has been true. I would bet my house on the fact that this has something to do with our most recent set of scans. Unfortunately, she now speaks "girl," a language which I have a horrible time translating. In fact, I have found that my translations are often antonyms of the true definition. While I know this probably has something to do with fear and the fact that all of this is horribly unfair to her, I have no idea how to broach the subject with her.
As you can tell, I am a talker. I talk out my problems. Sydney is more like my blushing bride. They are thinkers. (BTW, this is no time to make sexist remarks about how much that makes sense considering the fact that I am male and all men talk before they think.)
Regardless, I just don't know how to bridge that gap. I don't know how to help her. I don't want to reward her fits and bad attitude but I also want her to know that I am here and that I want to understand.
Unfortunately, I just don't have the answer.
I would gladly take this purpose over the other but that does not mean I am any closer to the answer.
On another note, I am really surprised this Christmas. I have expected my children to be much better behaved. After all, Santa Claus could be looking at them at any given moment. Consider the fact that I have taken off the week from work to be with them and I can tell you first hand that I have witnessed Santa observing them and he is none too impressed.
My children will be receiving coal for Christmas.
I know, in light of last weeks events you may expect Santa to be soft. Perhaps he could understand the impact stress has put on their gentle psyches. But no, he has had it.
I really can't blame Graham and Ainsley too much. No, its seems that their not so benevolent leader is the instigator of their twerp revolt. They are just imitating the master. I know of no other way to put it. Sydney is pissed. (I know, sorry Grammy, but there is no better word to encapsulate her condition) She is pissed about waking up. She is pissed about eating breakfast. She is pissed about going to ninja day. She is pissed about going to the movies. In fact, I can't think of a single thing that Sydney is not pissed about.
So, the question is, why?
This certainly is not Sydney. While I can tell you (probably even without getting hit) that, while she can have some of her mother's angst (her mother who is a beautiful, kind, intelligent and loving spouse and mother), she is generally a pretty happy little girl. There is a lot in life that she finds tremendous joy in. For instance, she loves crafts and she loves to read. She loves to play outside and she loves to cuddle with her daddy in the morning. There is usually a lot that she is happy about and the great thing about it is that it is simple things that seem to bring her the most joy.
Unfortunately, over the last week, none of that has been true. I would bet my house on the fact that this has something to do with our most recent set of scans. Unfortunately, she now speaks "girl," a language which I have a horrible time translating. In fact, I have found that my translations are often antonyms of the true definition. While I know this probably has something to do with fear and the fact that all of this is horribly unfair to her, I have no idea how to broach the subject with her.
As you can tell, I am a talker. I talk out my problems. Sydney is more like my blushing bride. They are thinkers. (BTW, this is no time to make sexist remarks about how much that makes sense considering the fact that I am male and all men talk before they think.)
Regardless, I just don't know how to bridge that gap. I don't know how to help her. I don't want to reward her fits and bad attitude but I also want her to know that I am here and that I want to understand.
Unfortunately, I just don't have the answer.
I would gladly take this purpose over the other but that does not mean I am any closer to the answer.
Tuesday, December 21, 2010
Finding the cure for neuroblastoma over lunch
Every year since Sydney's diagnosis we have fought to find the cure for neuroblastoma. Of course, for me, I had a vested interested. But, that was only the catalyst. That was the spark that made me realize what a truly horrible situation children with cancer were in. You see, I had never known that childhood cancer was the number one disease killer of children in the US. I was shocked to learn that it was a more common killer than Muscular Dystrophy, Cystic Fibrosis, Flu, Asthma and AIDS -- COMBINED!
I just didn't know.
I also didn't know that the term childhood cancer was made up of over 80 indications and that all of those different childhood cancers COMBINED received less than 1/4 of the funding than just one adult cancer (breast cancer) received.
Think about that. With so little funding and so little support for our nation's number one disease killer of children, how would we ever find a cure for any childhood cancer - much less neuroblastoma?
Our answer was to do something about it and just 2 months after Sydney's diagnosis Lunch for a Cure was born. The mission is simple - raise money for neuroblastoma research that will lead to a cure - and the concept was even simpler - ask everyone to give up lunch for one day and donate their lunch money to neuroblastoma research.
Over the years we have raised millions of dollars for neuroblastoma research and lives have been saved. Yes, their are children alive today that would not be had it not been for out lunches. Think about that power. All you did was give up one lunch - but it saved a child's life. That is power.
And so here we sit at the end of another year but on the verge of funding the most important clinical trial we have ever had the opportunity to fund. Our goal is to raise $150,000 to fund a trial for children with neuroblastoma. That is $3000 per child for 50 children. We are funding a trial that is using a drug which has already been proven to increase survival by 20% but giving it to a group of children that do not currently have access to it. Furthermore, we are combining it with new drugs in the hope that it will become even more effective while also reducing its toxicity.
There is no doubt that this trial will save lives. It is important and it must be funded. 100% of donations go to fund this important clinical trial. There are no administrative fees or costs. This is entirely about funding neuroblastoma research. This is about finding the cure.
When was the last time your lunch could save a life?
Please give up your lunch today and donate it to lunch for a cure and ask all of your family, friends and coworkers to do the same. It is just one lunch but it will save lives.
You want to make a big difference this Holiday Season?
Please:
We will save lives.
Today all children with neuroblastoma will be our purpose.
I just didn't know.
I also didn't know that the term childhood cancer was made up of over 80 indications and that all of those different childhood cancers COMBINED received less than 1/4 of the funding than just one adult cancer (breast cancer) received.
Think about that. With so little funding and so little support for our nation's number one disease killer of children, how would we ever find a cure for any childhood cancer - much less neuroblastoma?
Our answer was to do something about it and just 2 months after Sydney's diagnosis Lunch for a Cure was born. The mission is simple - raise money for neuroblastoma research that will lead to a cure - and the concept was even simpler - ask everyone to give up lunch for one day and donate their lunch money to neuroblastoma research.
Over the years we have raised millions of dollars for neuroblastoma research and lives have been saved. Yes, their are children alive today that would not be had it not been for out lunches. Think about that power. All you did was give up one lunch - but it saved a child's life. That is power.
And so here we sit at the end of another year but on the verge of funding the most important clinical trial we have ever had the opportunity to fund. Our goal is to raise $150,000 to fund a trial for children with neuroblastoma. That is $3000 per child for 50 children. We are funding a trial that is using a drug which has already been proven to increase survival by 20% but giving it to a group of children that do not currently have access to it. Furthermore, we are combining it with new drugs in the hope that it will become even more effective while also reducing its toxicity.
There is no doubt that this trial will save lives. It is important and it must be funded. 100% of donations go to fund this important clinical trial. There are no administrative fees or costs. This is entirely about funding neuroblastoma research. This is about finding the cure.
When was the last time your lunch could save a life?
Please give up your lunch today and donate it to lunch for a cure and ask all of your family, friends and coworkers to do the same. It is just one lunch but it will save lives.
You want to make a big difference this Holiday Season?
Please:
- Go to https://LunchforaCure.org/donate.aspx
- Enter a donation amount.
- Select Sydney's name
- Make a donation
- Ask everyone you know to do the same.
We will save lives.
Today all children with neuroblastoma will be our purpose.
Monday, December 20, 2010
More questions than answers
Wow, I still can't say that I have recovered from last week's scans. Don't get me wrong. We pretty much totally relaxed and decompressed over the weekend. I just don't think it was enough to recover from 2 pretty much entirely sleepless nights in a row. Making all of this substantially worse was the fact that this was the first time that Sydney truly bore the stress as well. Up until this point we had the privilege of carrying the worry and concern for her. She was too young to know what was at stake. But, this time - this time, she somehow knew - she knew the stakes were high.
Friday morning before we left for the hospital to get the results from the test she could be heard in the shower crying. When asked, she just said that she did not want to die.
What do you say?
As you probably know by now, by about 11:00 AM on Friday we knew that her latest scan had come back negative. That was as good of news as we could have received but it still leaves many unanswered questions.
Let me step back a moment.
This all began over a week ago with the results of her CT scan. Sydney's CT scan always seems to bring some surprises and this one was no different. She had a new sclerotic lesion on her breast plate ( this is the bony structure at the top of the sternum.) The lesion is about 5mm x 4mm. It was not present in her CT scan almost 6 months ago. So, it was a relatively new occurrence. Sydney also had several other lesions on her hips. However, these are all old and have been there for years. 3 of them, however, appeared to be slightly bigger. She also has another lesion on T9, and while this appeared to change size as well, it too had been there since diagnosis. While these lesions have grown it is unknown as to whether this just (1) a result of the way CT scans acquire their images, (2) attributable to the fact that Sydney has grown, or (3) something else. Regardless, as the official report points out, this is all "consistent with metastatic cancer." Hence the reason we were thrown into a full workup. The general belief was that we would confirm neuroblastoma and be thrust back into the world of childhood cancer treatment.
The problem (or incredible news) is that none of the follow up scans confirmed neuroblastoma. Her blood work was spectacular. There was no indication of anything being wrong. The bone scan, too, was perfectly clear. This indicated that whatever the issue was with the bone it did not seem to be active. Typically, with neuroblastoma, you would see activity as the cancer ate away at the bone and body rushed to try to repair it. None of that was there. The MIBG scan was the biggest hurdle. It was our most specific test for neuroblastoma but it came back negative as well. Unfortunately, a negative MIBG scan is far from a guarantee of being neuroblastoma free, however, it was a full dose of hope that it may not be the monster.
But, if it is not neuroblastoma, what could it be?
The other side of this coin is not very promising. While there are several other causes of sclerotic lesions, none of them appear to be likely candidates for Sydney. No, given everything else, metastatic cancer still appears the most likely candidate.
I know. It all sounds very depressing. However, there is some good news in all of this too. While it may look like metastic cancer, it certainly is not acting like something as aggressive as neuroblastoma. I think everyone is still shocked that the bone scan was clear. I think the belief amongst us all was that had this been neuroblastoma we would have most likely seen some activity there. Additionally, although this is a bony lesion and the type of relapse that we would expect from Sydney, it is not necessarily where we would expect to see Sydney relapse. I would suspect one of her original spots of metastases to be a much more likely candidate. The pelvis the spine, a shoulder or a rib would all be likely candidates for a new lesion but we really have not seen that - just slight changes which could simply be a result of time. This is another indication that perhaps what we are dealing with is not neuroblastoma. Finally, although it is a schlerotic lesion, it doesn't look exactly how a sclerotic lesion caused by neuroblastoma usually looks. There are some differences and that gives us hope as well.
So, what else?
Well, this is what I was talking about when I said neuroblastoma experts around the country were being consulted. We really don't know what else. So, we are asking everyone else if they have ever seen anything like this. Perhaps, if we can find others, we might find an answer. If it is not neuroblastoma, it is an unknown. It could be caused by some kind of late effect of treatment. Perhaps she has some kind of autoimmune process that is causing these lesions. Heck, it may even be some kind of indolent form of neuroblastoma that is being handled by her immune system. As an unknown, it could be any one of a million things and that is why it is key that we try to find others with similar findings. This could be something as simple as an undocumented late effect.
You see, the problem is that there is no one like Sydney. There is no one that has had every treatment that she has had. So, it is not like we can look at 1000 patients that have been treated just like her and look for side effects. For better or worse, she is an n of 1. Don't get me wrong. I would love to hear of others that share this "condition" We want an answer and preferrably one that is not neuroblastoma.
Could it be a side effect? Could it be a smoldering, slow-growing form of neuroblastoma?
Could Sydney live to be a little old lady? Could we just be sitting on the cusp of a major relapse?
We just don't know.
It is just fuel for more purpose.
Friday morning before we left for the hospital to get the results from the test she could be heard in the shower crying. When asked, she just said that she did not want to die.
What do you say?
As you probably know by now, by about 11:00 AM on Friday we knew that her latest scan had come back negative. That was as good of news as we could have received but it still leaves many unanswered questions.
Let me step back a moment.
This all began over a week ago with the results of her CT scan. Sydney's CT scan always seems to bring some surprises and this one was no different. She had a new sclerotic lesion on her breast plate ( this is the bony structure at the top of the sternum.) The lesion is about 5mm x 4mm. It was not present in her CT scan almost 6 months ago. So, it was a relatively new occurrence. Sydney also had several other lesions on her hips. However, these are all old and have been there for years. 3 of them, however, appeared to be slightly bigger. She also has another lesion on T9, and while this appeared to change size as well, it too had been there since diagnosis. While these lesions have grown it is unknown as to whether this just (1) a result of the way CT scans acquire their images, (2) attributable to the fact that Sydney has grown, or (3) something else. Regardless, as the official report points out, this is all "consistent with metastatic cancer." Hence the reason we were thrown into a full workup. The general belief was that we would confirm neuroblastoma and be thrust back into the world of childhood cancer treatment.
The problem (or incredible news) is that none of the follow up scans confirmed neuroblastoma. Her blood work was spectacular. There was no indication of anything being wrong. The bone scan, too, was perfectly clear. This indicated that whatever the issue was with the bone it did not seem to be active. Typically, with neuroblastoma, you would see activity as the cancer ate away at the bone and body rushed to try to repair it. None of that was there. The MIBG scan was the biggest hurdle. It was our most specific test for neuroblastoma but it came back negative as well. Unfortunately, a negative MIBG scan is far from a guarantee of being neuroblastoma free, however, it was a full dose of hope that it may not be the monster.
But, if it is not neuroblastoma, what could it be?
The other side of this coin is not very promising. While there are several other causes of sclerotic lesions, none of them appear to be likely candidates for Sydney. No, given everything else, metastatic cancer still appears the most likely candidate.
I know. It all sounds very depressing. However, there is some good news in all of this too. While it may look like metastic cancer, it certainly is not acting like something as aggressive as neuroblastoma. I think everyone is still shocked that the bone scan was clear. I think the belief amongst us all was that had this been neuroblastoma we would have most likely seen some activity there. Additionally, although this is a bony lesion and the type of relapse that we would expect from Sydney, it is not necessarily where we would expect to see Sydney relapse. I would suspect one of her original spots of metastases to be a much more likely candidate. The pelvis the spine, a shoulder or a rib would all be likely candidates for a new lesion but we really have not seen that - just slight changes which could simply be a result of time. This is another indication that perhaps what we are dealing with is not neuroblastoma. Finally, although it is a schlerotic lesion, it doesn't look exactly how a sclerotic lesion caused by neuroblastoma usually looks. There are some differences and that gives us hope as well.
So, what else?
Well, this is what I was talking about when I said neuroblastoma experts around the country were being consulted. We really don't know what else. So, we are asking everyone else if they have ever seen anything like this. Perhaps, if we can find others, we might find an answer. If it is not neuroblastoma, it is an unknown. It could be caused by some kind of late effect of treatment. Perhaps she has some kind of autoimmune process that is causing these lesions. Heck, it may even be some kind of indolent form of neuroblastoma that is being handled by her immune system. As an unknown, it could be any one of a million things and that is why it is key that we try to find others with similar findings. This could be something as simple as an undocumented late effect.
You see, the problem is that there is no one like Sydney. There is no one that has had every treatment that she has had. So, it is not like we can look at 1000 patients that have been treated just like her and look for side effects. For better or worse, she is an n of 1. Don't get me wrong. I would love to hear of others that share this "condition" We want an answer and preferrably one that is not neuroblastoma.
Could it be a side effect? Could it be a smoldering, slow-growing form of neuroblastoma?
Could Sydney live to be a little old lady? Could we just be sitting on the cusp of a major relapse?
We just don't know.
It is just fuel for more purpose.
Friday, December 17, 2010
A deeeeeeeep exhale
I don't have time to go into the details right now. There is much expert consultation going on in the world of neuroblastoma, but, my original take (not my paranoid one) on the MIBG was correct. She was negative. The spots of concern that I identified were attributable to brown fat and normal uptake. We still have to figure out what the new lesion is on CT but right now the belief is that we are dealing with an unknown.
As of right now there are no plans but to enjoy Christmas.
We still have no answer but this is the best news we could have walked out with today.
More to come after I can stop crying tears of joy.
Thank you for the prayers. Thank you for my purpose.
As of right now there are no plans but to enjoy Christmas.
We still have no answer but this is the best news we could have walked out with today.
More to come after I can stop crying tears of joy.
Thank you for the prayers. Thank you for my purpose.
On the verge of heartbreak.
First off, I want to thank everyone for their prayers and well wishes. I have received hundreds and have cherished each and every one. They mean the world. Thank you. I just don't have the capacity to respond right now.
So, yesterday really did not go how I suspected. I am sure that this entry will come as quite a shock to many that talked to me yesterday. The scan actually went okay. I don't know if I had my parental rosy blinders on but, during the scan, I really did not see anything. For some reason though, against what I am sure is hospital policy, I snapped a picture of the screen on my iPhone.
At that moment, I did it for reassurance.
To me nothing was glaring on the scan. There was an issue with the bladder but that was not expected to be disease. It is funny how your mind plays tricks on you. Here I am somebody that has been exposed to as many MIBG scans as a parent possibly could be and yet I somehow missed some fairly obvious things. Yet, another indication of my fragile mental state.
But still, I would not notice these little nuances even though I would review the scan many times throughout the day. After Sydney finished, we took her back to back to school and visited all of the kiddo's Christmas parties. There were even a few parents there that I took the opportunity to show Sydney's scan to. - Yet, another violation of a hospital policy I am sure.
I still did not notice anything...
The kiddos got out early from school and, for a nice change, I got to spend some quality time with them all afternoon snuggling on the couch watching movies. It was so wonderful. I have been so busy lately this had been one of the first times in quite awhile that I just got to sit around with them and do nothing.
I loved every second of it.
In fact, I loved it so much I totally missed the fact that Graham and Sydney both had belt testing at Tae Kwon Do at 5:30PM. Thankfully, Lynley was somehow still playing with a full deck of cards and was there to make sure we made it on time. When I arrived, the first question on Master Adrian's lips was "How is Sydney?" It was in showing her the scan that 2 subtleties in it started to appear - one on her right shoulder, and one on her sternum. Watching the belt test was tough. The kiddos both did spectacularly. They both broke boards with flying kicks. They both sparred beautifully and the forms and one steps were perfect. While I will tell you that I watched every aspect of my own kiddos performances, I must admit that I spent the rest of the time staring at the scans and comparing them to others from medical journals on my phone.
Now, I will be really honest with you. I saw scans that included hot spots just like the ones that I had captured on Sydney in kiddos with perfectly clear MIBG scans. I could easily blame the spot on the shoulder on brown fat and I can even provide you some references of scans where the hot spots were symmetrical but had more intensity on one side than the other - just like in Sydney's case. Furthermore, I can show you several scans that have something that seems to almost wrap around the sternum at about heart level - very similar to Sydney's. All of those were also on scans that were deemed clean by neuroblastoma experts. (See 123I-Metaiodobenzylguanidine Uptake in the Nape of the Neck of Children: Likely Visualization of Brown Adipose Tissue, Journal of Nuclear Medicine Vol. 44 No. 9 1421-1425)
But, somehow, even though I found those examples, I spent most of the night awake in tears. I know that if it was anyone's scan but Sydney's that I would identify those spots as disease. I simply can't change the fact that they are there.
I am heartbroken.
Over night I tried to get out all of my tears so that I could be strong for my family today. But even now, I sit barely able to breathe with a lump in my throat and unable to see the screen because of my tears.
Could I be wrong? God, I hope so. I have prayed and prayed. I have sworn off every vice that I have and even promised to start a few more just so that I could swear those off as well. Add on top of that that I only saw the 2D scan and not the 3D version, her spots could be explained away as normal.
I just can't bring myself to get my hopes up. Perhaps, I fear the devastation too much.
Add on top of all of this the fact that we did not hear from Dr. Eames yesterday. Knowing her, she would have called had she had good news. She knows us too well.
Today, at 9:30 AM we have an appointment where we should get the definitive answer. I will be there with Lynley and Sydney and, for those of you that know, I will be wearing a Hawaiian shirt.
God help us. Please spare my purpose.
So, yesterday really did not go how I suspected. I am sure that this entry will come as quite a shock to many that talked to me yesterday. The scan actually went okay. I don't know if I had my parental rosy blinders on but, during the scan, I really did not see anything. For some reason though, against what I am sure is hospital policy, I snapped a picture of the screen on my iPhone.
At that moment, I did it for reassurance.
To me nothing was glaring on the scan. There was an issue with the bladder but that was not expected to be disease. It is funny how your mind plays tricks on you. Here I am somebody that has been exposed to as many MIBG scans as a parent possibly could be and yet I somehow missed some fairly obvious things. Yet, another indication of my fragile mental state.
But still, I would not notice these little nuances even though I would review the scan many times throughout the day. After Sydney finished, we took her back to back to school and visited all of the kiddo's Christmas parties. There were even a few parents there that I took the opportunity to show Sydney's scan to. - Yet, another violation of a hospital policy I am sure.
I still did not notice anything...
The kiddos got out early from school and, for a nice change, I got to spend some quality time with them all afternoon snuggling on the couch watching movies. It was so wonderful. I have been so busy lately this had been one of the first times in quite awhile that I just got to sit around with them and do nothing.
I loved every second of it.
In fact, I loved it so much I totally missed the fact that Graham and Sydney both had belt testing at Tae Kwon Do at 5:30PM. Thankfully, Lynley was somehow still playing with a full deck of cards and was there to make sure we made it on time. When I arrived, the first question on Master Adrian's lips was "How is Sydney?" It was in showing her the scan that 2 subtleties in it started to appear - one on her right shoulder, and one on her sternum. Watching the belt test was tough. The kiddos both did spectacularly. They both broke boards with flying kicks. They both sparred beautifully and the forms and one steps were perfect. While I will tell you that I watched every aspect of my own kiddos performances, I must admit that I spent the rest of the time staring at the scans and comparing them to others from medical journals on my phone.
Now, I will be really honest with you. I saw scans that included hot spots just like the ones that I had captured on Sydney in kiddos with perfectly clear MIBG scans. I could easily blame the spot on the shoulder on brown fat and I can even provide you some references of scans where the hot spots were symmetrical but had more intensity on one side than the other - just like in Sydney's case. Furthermore, I can show you several scans that have something that seems to almost wrap around the sternum at about heart level - very similar to Sydney's. All of those were also on scans that were deemed clean by neuroblastoma experts. (See 123I-Metaiodobenzylguanidine Uptake in the Nape of the Neck of Children: Likely Visualization of Brown Adipose Tissue, Journal of Nuclear Medicine Vol. 44 No. 9 1421-1425)
But, somehow, even though I found those examples, I spent most of the night awake in tears. I know that if it was anyone's scan but Sydney's that I would identify those spots as disease. I simply can't change the fact that they are there.
I am heartbroken.
Over night I tried to get out all of my tears so that I could be strong for my family today. But even now, I sit barely able to breathe with a lump in my throat and unable to see the screen because of my tears.
Could I be wrong? God, I hope so. I have prayed and prayed. I have sworn off every vice that I have and even promised to start a few more just so that I could swear those off as well. Add on top of that that I only saw the 2D scan and not the 3D version, her spots could be explained away as normal.
I just can't bring myself to get my hopes up. Perhaps, I fear the devastation too much.
Add on top of all of this the fact that we did not hear from Dr. Eames yesterday. Knowing her, she would have called had she had good news. She knows us too well.
Today, at 9:30 AM we have an appointment where we should get the definitive answer. I will be there with Lynley and Sydney and, for those of you that know, I will be wearing a Hawaiian shirt.
God help us. Please spare my purpose.
Thursday, December 16, 2010
A trip through the mind of a basket case
For me, this week has been a downhill slide. I keep grabbing the sides to slow down but my mind just won't stop going there. I have that all to familiar uneasiness where my heart is lodged in my throat. In my moments alone, there is a whirlwind of thoughts swirling through my brain and it almost always leaves me on the brink of tears. It does not take long to take a relatively stable man and turn him into a puddle of complete and utter mess.
Here I sit at 4:00 AM, some 4 hours before Sydney's MIBG scan. In fact, I am writing these words and will probably have realized our future well before anyone reads them. Somehow though, it still makes me feel better to sit here and write.
This scan has me the most terrified. To me it is this scan that is probably the true test as to whether Sydney has relapsed. The thought that in just 4 hours I will have a good idea of Sydney's future - whether she will live or not - is just surreal. I don't really know how to explain it and I don't know that I would want to.
All night long my mind has relived what today's scan might be like. Could I bring myself to watch the monitors? Do I just want to wait to hear the results from Dr. Eames tomorrow? If the scan goes bad, how would I explain this all to Sydney? What about Graham and Ainsley? How do I keep it together?
I tell you, I am mental. This little episode has brought me to my knees. Oh sure, I have been there and seen it 1000 times. I know how this all goes. But still, when it is your child, it is an entirely different story. It looks different, smells different, and feels different.
I am scared out of my wits. You can't see it, not even when we are standing face to face, but I am trembling with fear. The two Mark's (hopefully temporarily) are back.
So, why all of the fear? What does today mean?
The good news is that the results of this scan have played out in my mind so many times that I have considered just about every possibility. So, for those of you new to this, the MIBG (metaiodobenzylguanidine - and no, I (unfortunately) did not have to look that up) scan is a specialized scan, primarily used for children with neuroblastoma. MIBG is sucked up by about 90% of neuroblastoma tumors. In essence, they stick some radiation onto the MIBG particles and then inject them into the kids. Assuming there is neuroblastoma, the MIBG will congregate where the neuroblastoma cells are and then show up on the scan as a hot spot. If there is no neuroblastoma, the radiation will highlight the thyroid and some of the organs as it passes through the system on the way out but, other than that, it pretty much just passes through and disappears.
For Sydney, this scan is not definitive because we do not know for sure whether she is MIBG avid. I.e. we don't know any longer whether she is in the 90% group or the 10% group. We know that if that scan is positive there is a 99% chance she has relapsed neuroblastoma. However, if the scan is negative we can feel better about it but we still do not know for sure that she does not have neuroblastoma. She could be in that 10% of neuroblastomas whose disease just doesn't take up the MIBG. I make this distinction because it is a significant concern for her. You may remember that at her first "relapse" (if that is what it was) she was not MIBG avid even though she had been avid at her original diagnosis.
So, here is the rub. Over time I have become to believe that Sydney probably did not relapse. I am not alone in that revelation and can probably point you to about 50 neuroblastoma experts that feel the same way now. So, in my mind, she is still likely to be MIBG avid. Given that, if that spot on her breast plate is neuroblastoma, I will see it light up this morning.
I will be real honest with you. I am a big strong man, but I don't know if I could handle it. I will be there. I will be solid for my family. But jeez, I just don't know how I could possibly keep in together.
Back to rational, Mark.
So, anyway, today's scan is no fun. While we could discover that Sydney has relapsed neuroblastoma, on the other side of the coin, it does not provide us any guarantee that she doesn't. Don't get me wrong, though. I would give anything for a negative scan.
Take it all, just spare me my family.
So, here I sit. Ever the basket case, still hoping and praying for a clean scan - slowly watching the time tick away on the clock. In 3 hours an 42 minutes I will know. Is that when our lives will crumble?
Tick. Tick. Tick.
Praying for a clean scan.
God, I have purpose, give me strength.
Here I sit at 4:00 AM, some 4 hours before Sydney's MIBG scan. In fact, I am writing these words and will probably have realized our future well before anyone reads them. Somehow though, it still makes me feel better to sit here and write.
This scan has me the most terrified. To me it is this scan that is probably the true test as to whether Sydney has relapsed. The thought that in just 4 hours I will have a good idea of Sydney's future - whether she will live or not - is just surreal. I don't really know how to explain it and I don't know that I would want to.
All night long my mind has relived what today's scan might be like. Could I bring myself to watch the monitors? Do I just want to wait to hear the results from Dr. Eames tomorrow? If the scan goes bad, how would I explain this all to Sydney? What about Graham and Ainsley? How do I keep it together?
I tell you, I am mental. This little episode has brought me to my knees. Oh sure, I have been there and seen it 1000 times. I know how this all goes. But still, when it is your child, it is an entirely different story. It looks different, smells different, and feels different.
I am scared out of my wits. You can't see it, not even when we are standing face to face, but I am trembling with fear. The two Mark's (hopefully temporarily) are back.
So, why all of the fear? What does today mean?
The good news is that the results of this scan have played out in my mind so many times that I have considered just about every possibility. So, for those of you new to this, the MIBG (metaiodobenzylguanidine - and no, I (unfortunately) did not have to look that up) scan is a specialized scan, primarily used for children with neuroblastoma. MIBG is sucked up by about 90% of neuroblastoma tumors. In essence, they stick some radiation onto the MIBG particles and then inject them into the kids. Assuming there is neuroblastoma, the MIBG will congregate where the neuroblastoma cells are and then show up on the scan as a hot spot. If there is no neuroblastoma, the radiation will highlight the thyroid and some of the organs as it passes through the system on the way out but, other than that, it pretty much just passes through and disappears.
For Sydney, this scan is not definitive because we do not know for sure whether she is MIBG avid. I.e. we don't know any longer whether she is in the 90% group or the 10% group. We know that if that scan is positive there is a 99% chance she has relapsed neuroblastoma. However, if the scan is negative we can feel better about it but we still do not know for sure that she does not have neuroblastoma. She could be in that 10% of neuroblastomas whose disease just doesn't take up the MIBG. I make this distinction because it is a significant concern for her. You may remember that at her first "relapse" (if that is what it was) she was not MIBG avid even though she had been avid at her original diagnosis.
So, here is the rub. Over time I have become to believe that Sydney probably did not relapse. I am not alone in that revelation and can probably point you to about 50 neuroblastoma experts that feel the same way now. So, in my mind, she is still likely to be MIBG avid. Given that, if that spot on her breast plate is neuroblastoma, I will see it light up this morning.
I will be real honest with you. I am a big strong man, but I don't know if I could handle it. I will be there. I will be solid for my family. But jeez, I just don't know how I could possibly keep in together.
Back to rational, Mark.
So, anyway, today's scan is no fun. While we could discover that Sydney has relapsed neuroblastoma, on the other side of the coin, it does not provide us any guarantee that she doesn't. Don't get me wrong, though. I would give anything for a negative scan.
Take it all, just spare me my family.
So, here I sit. Ever the basket case, still hoping and praying for a clean scan - slowly watching the time tick away on the clock. In 3 hours an 42 minutes I will know. Is that when our lives will crumble?
Tick. Tick. Tick.
Praying for a clean scan.
God, I have purpose, give me strength.
Wednesday, December 15, 2010
Preparing for MIBG
Today I don't have much to say. Tomorrow will be a far more exhaustive review. I just did not want to leave everyone hanging. I really don't feel much different than I did yesterday. I am happy to see the results from Sydney's bone scan. I am still scared out of my wits for the upcoming MIBG. However, today should be relatively uneventful. We have an MIBG injection and a few labs in preparation for tomorrow morning's scan. Hopefully, this will go smoothly for Sydney. She has had so many bad experiences with IVs we are just hoping that this one will go as smoothly as the last. They used a J-Tip on her during the last injection and it worked flawlessly. She did not feel a thing. I just pray that these little successes will reduce the fear that I know is swimming around in her little brain.
My thought for today is just trying to ensure that Sydney is comfortable in her own skin.
That is my purpose.
My thought for today is just trying to ensure that Sydney is comfortable in her own skin.
That is my purpose.
Tuesday, December 14, 2010
A clean skeleton in her closet
First off, I have not forgotten everything. I know that when things aren't going your way you have to celebrate your small successes. Yesterday was just that. In fact, it greatly surpassed by expectations. Here is how it happened.
At about 9:00 AM I heard from the oncology team. Everything had been moved into fast forward. Sydney needed to be at the hospital at 10:30 AM for our first day of what was quickly turning into a scan whirlwind tour. No problem for Lynley and I but this presented some big concerns regarding Sydney. We had to call the school to get her out of class but, with a little girl who was becoming more and more self aware, we were concerned with what would be going through her mind. She knew she had just had a scan on Friday. She knew she was done with scans. What would be going through her mind when she realized that Mommy and Daddy would be picking her up? Would she be scared?
Lynley and I quickly game up with a game plan. We would both be simple and honest. Daddy would focus on being funny and silly. Lynley would concentrate on rolling her eyes at Daddy. If we did it just right we could get out of there without scaring her too much. Simply put, we told her that there was something on her scan that they just couldn't figure out. So, they needed some other scans to help tell them what it was. Sydney was comfortable with that. Lynley and I skated by this particular incident but I must admit we are in a totally new world with her. She is of age and starting to ask some very tough questions. It is the subject of a diary entry unto itself. But, suffice it to say, Sydney is aware.
On to the scan.
By about 2:15, Sydney was on the table in nuclear medicine. The scan took about 15 minutes. Sydney was in the zone on the narrow table slowly sliding between the 2 large plates that do all of the magic. Lynley and I stood closely by and chatted with the technicians Steve and Margaret. It was familiar for all of us. It was the same people and the same room. We have been coming here every 3 months for the last 7 years. Everyone in the room has been there with us from the very beginning.
We all know.
Oddly enough, the conversation was light. In fact, the only thing making anyone nervous was the fact that I was constantly walking back and forth to the monitor to get a better view of Sydney's scan results. The news was good though. This was the best skeleton I had ever seen. It looked absolutely clear. However, I also knew that I was looking for a 5 mm spot on Sydney on a monitor which was at about a 1:16 scale. I did not even truly know if I would be able to see the lesion on a screen so small.
Regardless, the scan looked good. My biggest fears of diffuse bony turnover or riddled little skeleton were alleviated. She still may have a little disease but judging by this scan it certainly wasn't widespread.
That was incredible news and worthy of a deep exhale.
The rest of the day was pretty family centric. We picked up the rest of the kiddos from school. Daddy put his little twerplet collating army to work at the local Mail Stop to get out a mountain of Lunch for a Cure materials. We then made our way home and then back out to Tae Kwon Do. For all practical purposes, it was a relatively normal night.
Later though, the phone rang.
It was Dr. Eames. She was ecstatic and called to let me know that the bone scan was absolutely clear. I might even say she was downright giddy about the news, but I certainly would not want to give the impression that she was anything less than perfectly professional.
In the big scheme of what lies ahead, this was a small success. But, make no mistake, it was a huge step in the right direction. It is worthy of some temporary celebration while we prepare for the next one.
Much more lies ahead.
So what does this all really mean? Well, the real key here is that we did not see several spots of concern. Furthermore, the fact that there is not activity at this spot would seem to indicate that this probably is not an aggressive process. Could it still be neuroblastoma? Absolutely. But, is it becoming less likely? You betcha.
Our next step is MIBG which they were thankfully able to schedule for this week. We will have a day of normalcy before our injection on Wednesday. In the meantime, though, there will continue to be more planning and scheduling.
But, for right now, your prayers are working. Thank you.
Yesterday, was a victory for purpose.
At about 9:00 AM I heard from the oncology team. Everything had been moved into fast forward. Sydney needed to be at the hospital at 10:30 AM for our first day of what was quickly turning into a scan whirlwind tour. No problem for Lynley and I but this presented some big concerns regarding Sydney. We had to call the school to get her out of class but, with a little girl who was becoming more and more self aware, we were concerned with what would be going through her mind. She knew she had just had a scan on Friday. She knew she was done with scans. What would be going through her mind when she realized that Mommy and Daddy would be picking her up? Would she be scared?
Lynley and I quickly game up with a game plan. We would both be simple and honest. Daddy would focus on being funny and silly. Lynley would concentrate on rolling her eyes at Daddy. If we did it just right we could get out of there without scaring her too much. Simply put, we told her that there was something on her scan that they just couldn't figure out. So, they needed some other scans to help tell them what it was. Sydney was comfortable with that. Lynley and I skated by this particular incident but I must admit we are in a totally new world with her. She is of age and starting to ask some very tough questions. It is the subject of a diary entry unto itself. But, suffice it to say, Sydney is aware.
On to the scan.
By about 2:15, Sydney was on the table in nuclear medicine. The scan took about 15 minutes. Sydney was in the zone on the narrow table slowly sliding between the 2 large plates that do all of the magic. Lynley and I stood closely by and chatted with the technicians Steve and Margaret. It was familiar for all of us. It was the same people and the same room. We have been coming here every 3 months for the last 7 years. Everyone in the room has been there with us from the very beginning.
We all know.
Oddly enough, the conversation was light. In fact, the only thing making anyone nervous was the fact that I was constantly walking back and forth to the monitor to get a better view of Sydney's scan results. The news was good though. This was the best skeleton I had ever seen. It looked absolutely clear. However, I also knew that I was looking for a 5 mm spot on Sydney on a monitor which was at about a 1:16 scale. I did not even truly know if I would be able to see the lesion on a screen so small.
Regardless, the scan looked good. My biggest fears of diffuse bony turnover or riddled little skeleton were alleviated. She still may have a little disease but judging by this scan it certainly wasn't widespread.
That was incredible news and worthy of a deep exhale.
The rest of the day was pretty family centric. We picked up the rest of the kiddos from school. Daddy put his little twerplet collating army to work at the local Mail Stop to get out a mountain of Lunch for a Cure materials. We then made our way home and then back out to Tae Kwon Do. For all practical purposes, it was a relatively normal night.
Later though, the phone rang.
It was Dr. Eames. She was ecstatic and called to let me know that the bone scan was absolutely clear. I might even say she was downright giddy about the news, but I certainly would not want to give the impression that she was anything less than perfectly professional.
In the big scheme of what lies ahead, this was a small success. But, make no mistake, it was a huge step in the right direction. It is worthy of some temporary celebration while we prepare for the next one.
Much more lies ahead.
So what does this all really mean? Well, the real key here is that we did not see several spots of concern. Furthermore, the fact that there is not activity at this spot would seem to indicate that this probably is not an aggressive process. Could it still be neuroblastoma? Absolutely. But, is it becoming less likely? You betcha.
Our next step is MIBG which they were thankfully able to schedule for this week. We will have a day of normalcy before our injection on Wednesday. In the meantime, though, there will continue to be more planning and scheduling.
But, for right now, your prayers are working. Thank you.
Yesterday, was a victory for purpose.
Monday, December 13, 2010
Out, out damn spot
Yeah, the results from Sydney's scans weren't great and the air is thick with irony. You may recall from as recently as my last diary entry that I was not particularly concerned about the chunk of tumor sitting in Sydney's retro crural area. I was not concerned because it was not Sydney's biology to have this kind of solid tumor relapse. What I mentioned was that I would expect bony disease - bony lesions - multifocal sclerotic lesions and guess what - damn it?
I was right. The retro crural fullness was not even remarked. But, that was not where the news ended. They found a bony lesion.
Yep, we have a new sclerotic lesion on her breast bone. When taken with other findings we now have a collection which makes them multifocal. The are all kinds of possibilities in the differential diagnosis but none is more likely than recurrent neuroblastoma for a child like Sydney.
So, there you have it, the awful, bad, ugly news.
Is there any good news you ask? Well, neither myself nor the medical team are sure this is neuroblastoma. And, in this vortex of bad news, there is actually still some hope. First off, this is a sclerotic lesion by CT. Frpm that we do not know it is neuroblastoma. Furthermore, while neuroblastoma is a likely culprit, for Sydney, we have seen some pretty strange bony abnormalities which appear to have nothing to do with neuroblastoma. So with a healthy dose of skepticism, here is why I am not freaking out all over the place.
First, while this is a new lesion, Sydney has had several of these lesions in her pelvis and spine. Over the years they have remained stable and any changes have always been attributed to the way the CT scan sliced the images. Sydney probably has 5 or 6 (or more) of these lesions, all in the 1 - 5 mm range. As I have said they have been stable and non assuming and, interestingly, they have not been confirmed by MIBG. The only thing frightening about this new addition is the fact that it is new.
While a bony relapse may look just like this, in Sydney's case, something just does not add up. It is not exactly what we would suspect. For this reason, it has us all a little skeptical. We have a "heightened sense of awareness" but no one seems to be screaming relapse -- yet.
None the less, this is Sydney, and she does have stage 4 neuroblastoma. We can't rule it out and we have to go find more. For this reason, we are now lining her out for a full work up. Today she will likely get a bone scan and it we will try to work her in for an MIBG scan assuming we can get some for her this week. Unfortunately, we may have to wait another week. They order MIBG on Friday for a Wednesday delivery so the only way we will get scanned this week is if they have some extra.
You can probably also expect a bone biopsy in the very near future. We need to know what it is and I am guessing we will just go in to get it. I know this will happen if we have a negative MIBG result but it is possible that we may go in either way.
So, what else could this be. Well, I am skeptical of some kind of autoimmune process. This is the same nebulous culprit that I have blamed for the other lesions that we have discovered on her body over the years. Don't forget the strange lesion we had on her tibia or the bonus we found on her radius. I think, and I am hopefully praying, that this is all one in the same. The problem is that we may never know what it is. The good news is that it would not be neuroblastoma and that is about all we can hope for right now.
So, we are praying with all of our might that this is not neuroblastoma. We are looking for a clean MIBG. I am expecting the bone scan to be positive but that does not mean neuroblastoma - just that something is causing bone turnover. Regardless of the cause, I think we already know that is happening. Although, I would suspect that a negative finding would tend to point to a less aggressive process. Given Sydney's history and lack of MIBG lesions I am hopeful and guessing that her MIBG will be negative. While certainly not a definitive finding, a negative result by MIBG would sure make me feel a heck of a lot better.
I know, it sucks.
But, this is the reason I have so darn much purpose.
Pray on.
I was right. The retro crural fullness was not even remarked. But, that was not where the news ended. They found a bony lesion.
Yep, we have a new sclerotic lesion on her breast bone. When taken with other findings we now have a collection which makes them multifocal. The are all kinds of possibilities in the differential diagnosis but none is more likely than recurrent neuroblastoma for a child like Sydney.
So, there you have it, the awful, bad, ugly news.
Is there any good news you ask? Well, neither myself nor the medical team are sure this is neuroblastoma. And, in this vortex of bad news, there is actually still some hope. First off, this is a sclerotic lesion by CT. Frpm that we do not know it is neuroblastoma. Furthermore, while neuroblastoma is a likely culprit, for Sydney, we have seen some pretty strange bony abnormalities which appear to have nothing to do with neuroblastoma. So with a healthy dose of skepticism, here is why I am not freaking out all over the place.
First, while this is a new lesion, Sydney has had several of these lesions in her pelvis and spine. Over the years they have remained stable and any changes have always been attributed to the way the CT scan sliced the images. Sydney probably has 5 or 6 (or more) of these lesions, all in the 1 - 5 mm range. As I have said they have been stable and non assuming and, interestingly, they have not been confirmed by MIBG. The only thing frightening about this new addition is the fact that it is new.
While a bony relapse may look just like this, in Sydney's case, something just does not add up. It is not exactly what we would suspect. For this reason, it has us all a little skeptical. We have a "heightened sense of awareness" but no one seems to be screaming relapse -- yet.
None the less, this is Sydney, and she does have stage 4 neuroblastoma. We can't rule it out and we have to go find more. For this reason, we are now lining her out for a full work up. Today she will likely get a bone scan and it we will try to work her in for an MIBG scan assuming we can get some for her this week. Unfortunately, we may have to wait another week. They order MIBG on Friday for a Wednesday delivery so the only way we will get scanned this week is if they have some extra.
You can probably also expect a bone biopsy in the very near future. We need to know what it is and I am guessing we will just go in to get it. I know this will happen if we have a negative MIBG result but it is possible that we may go in either way.
So, what else could this be. Well, I am skeptical of some kind of autoimmune process. This is the same nebulous culprit that I have blamed for the other lesions that we have discovered on her body over the years. Don't forget the strange lesion we had on her tibia or the bonus we found on her radius. I think, and I am hopefully praying, that this is all one in the same. The problem is that we may never know what it is. The good news is that it would not be neuroblastoma and that is about all we can hope for right now.
So, we are praying with all of our might that this is not neuroblastoma. We are looking for a clean MIBG. I am expecting the bone scan to be positive but that does not mean neuroblastoma - just that something is causing bone turnover. Regardless of the cause, I think we already know that is happening. Although, I would suspect that a negative finding would tend to point to a less aggressive process. Given Sydney's history and lack of MIBG lesions I am hopeful and guessing that her MIBG will be negative. While certainly not a definitive finding, a negative result by MIBG would sure make me feel a heck of a lot better.
I know, it sucks.
But, this is the reason I have so darn much purpose.
Pray on.
Friday, December 10, 2010
Twerp #1 Scan Day
Good morning! Well, as you can tell from the title, today is scan day for Sydney. It has been six months since radiologists discovered the chunk of tumor sitting inside of Sydney's belly. Today we will hopefully get some insight as to whether it is dead or alive and growing or not.
To refresh your memories (considering the fact that we are all a bit older now), at our scans six months ago they discovered a 17 mm x 21 mm chunk of what looks like tumor deep within Sydney's abdomen, tucked up under her diaphragm in the retro crural space. Woah, you may say! Relax, I may say. It turns out this chunk of "tumor likeness" has been there for years - at least 3 and maybe since diagnosis. While we have seen changes in the size of the tumor over time these are thought to be changes due to the way the CT scan acquire images, not to actual changes in the tumor(or whatever it is). Outside of neuroblastoma this could also just be the result of "postoperative changes" or due to some other type of extremely slow growing tumor.
Given the fact that we have not seen any real change over the years I must admit that I am feeling pretty good - all things considering. I mean, if you are going to find a chunk of tumor in your daughter that has had stage 4 neuroblastoma, this would have to be about the best thing you could find.
Now, I just hope it is not growing. In fact, the best thing we can probably hope for here is that we so no change. A nice nondescript, non assuming, and non transforming chunk of tumor would all suit us just fine I think. That would be best.
I always hate to speculate about scans or relapse because I fear rocking the karma. But, for your information, here is why it does not bother me so much. A solid tumor relapse really isn't Sydney's biology. That just isn't what we would expect from her. From her, I would expect a bony relapse with disease riddling her skeleton. That is what her disease is "supposed" to do (nice, huh?). That is not to say that a solid tumor relapse is impossible, just less likely.
Ah, the trials and tribulations of knowing too much about a disease you wish you had never heard of in the first place.
Regardless, this morning Sydney has a CT scan. That is pretty much it for this set of scans. (Yes, we are all trying to reduce the unnecessary radiation from a full work up.) She will also have an ECHO and an EKG just to make sure her ticker is in working order. Yet, another area we are watching closely for late effects. You know, when you have an Olympic athlete you have to worry about that stuff. (Okay, fine, we would have to worry about it even if she wasn't.)
So, there you have it. We have a busy day ahead. If you need a purpose today, we could use some prayers thrown in Sydney's direction.
You know what our purpose will be today.
To refresh your memories (considering the fact that we are all a bit older now), at our scans six months ago they discovered a 17 mm x 21 mm chunk of what looks like tumor deep within Sydney's abdomen, tucked up under her diaphragm in the retro crural space. Woah, you may say! Relax, I may say. It turns out this chunk of "tumor likeness" has been there for years - at least 3 and maybe since diagnosis. While we have seen changes in the size of the tumor over time these are thought to be changes due to the way the CT scan acquire images, not to actual changes in the tumor(or whatever it is). Outside of neuroblastoma this could also just be the result of "postoperative changes" or due to some other type of extremely slow growing tumor.
Given the fact that we have not seen any real change over the years I must admit that I am feeling pretty good - all things considering. I mean, if you are going to find a chunk of tumor in your daughter that has had stage 4 neuroblastoma, this would have to be about the best thing you could find.
Now, I just hope it is not growing. In fact, the best thing we can probably hope for here is that we so no change. A nice nondescript, non assuming, and non transforming chunk of tumor would all suit us just fine I think. That would be best.
I always hate to speculate about scans or relapse because I fear rocking the karma. But, for your information, here is why it does not bother me so much. A solid tumor relapse really isn't Sydney's biology. That just isn't what we would expect from her. From her, I would expect a bony relapse with disease riddling her skeleton. That is what her disease is "supposed" to do (nice, huh?). That is not to say that a solid tumor relapse is impossible, just less likely.
Ah, the trials and tribulations of knowing too much about a disease you wish you had never heard of in the first place.
Regardless, this morning Sydney has a CT scan. That is pretty much it for this set of scans. (Yes, we are all trying to reduce the unnecessary radiation from a full work up.) She will also have an ECHO and an EKG just to make sure her ticker is in working order. Yet, another area we are watching closely for late effects. You know, when you have an Olympic athlete you have to worry about that stuff. (Okay, fine, we would have to worry about it even if she wasn't.)
So, there you have it. We have a busy day ahead. If you need a purpose today, we could use some prayers thrown in Sydney's direction.
You know what our purpose will be today.
Thursday, December 9, 2010
Twerp Status Quo
I know it would not surprise anyone if I told you that this week was hectic. Here it is Thursday morning and the week has gone by so fast I can't really tell you what happened up until this point. It has been a whirlwind - both personally and professionally. Out of the depths of my mind (it is fairly shallow so it makes it easy) I can recall a few things.
First, the kiddos are all doing pretty well. In fact, Ainsley even brought home a blue sticker from school. It is funny. That still actually shocks the hell out of me. Regardless, once again she achieved greatness and we were all treated to a 49 cent vanilla ice cream cone on the way home. I truly am thankful for McDonald's this year. Ainsley has been so good that anything more than a 49 cent ice cream cone could put us in the poor house at her frequency of good behavior.
The others are doing pretty well, too. Tae kwon do is still a 3 night a week hurdle but the kiddos seem to be enjoying it. Oh sure, they complain that they would like to stay home and ride their Razors around the block for a few more hours but that doesn't phase me. Another hour of unmanaged chaotic behavior can never be a good thing when it comes to those 3 . Yes, the organized structure of tae kwon do class suits me just fine. At this point, it may be the only thing that preserves our parental sanity on those evenings.
Well, enough of the update. I have cookbooks to get out the door.
There is still time left. Don't forget to get your Christmas Lunch for a Cure cookbooks - it is 2 gifts in one - http://lunchforacure.org/cookbook
Back to shipping purpose.
First, the kiddos are all doing pretty well. In fact, Ainsley even brought home a blue sticker from school. It is funny. That still actually shocks the hell out of me. Regardless, once again she achieved greatness and we were all treated to a 49 cent vanilla ice cream cone on the way home. I truly am thankful for McDonald's this year. Ainsley has been so good that anything more than a 49 cent ice cream cone could put us in the poor house at her frequency of good behavior.
The others are doing pretty well, too. Tae kwon do is still a 3 night a week hurdle but the kiddos seem to be enjoying it. Oh sure, they complain that they would like to stay home and ride their Razors around the block for a few more hours but that doesn't phase me. Another hour of unmanaged chaotic behavior can never be a good thing when it comes to those 3 . Yes, the organized structure of tae kwon do class suits me just fine. At this point, it may be the only thing that preserves our parental sanity on those evenings.
Well, enough of the update. I have cookbooks to get out the door.
There is still time left. Don't forget to get your Christmas Lunch for a Cure cookbooks - it is 2 gifts in one - http://lunchforacure.org/cookbook
Back to shipping purpose.
Tuesday, December 7, 2010
The Holiday Hustle
You know, this time of year would be much more enjoyable if it could just slow down a little bit. While I would never ever want to go back to the days of living in the hospital, there were a few pretty good things that came out of that experience. Sure, Sydney was fighting cancer and our future was scary and unknown, but, we were together. At that point in our lives the Christmas parties weren't all important. There was little reason to spend a small fortune to decorate the house as we weren't really there that much. The only thing playing on the television was Bambi or Snow White so we were not inundated with ads or the realities of the world around us (the news was not being watched). Shopping seemed less important too. In fact, we didn't even really need Christmas presents. Sydney was too sick and the only thing anyone wanted was for her to feel better.
In a sense, it was calm.
In retrospect, it was almost even slow.
Now, I haven't forgotten everything. Although, my rosy colored history spectacles don't allow much of the pain and fear back in. I know I don't want to return. I also know we were busy and life was hectic.
But still, there was something different.
The beauty of Christmas then was its simplicity. The simple fact that we were together. In fact, that was all that really mattered. Christmas was about focusing on each other.
Today I feel like things are going in a 1000 different directions and I find myself yearning for a return to the basics. I just want to relax and be with my family. I have grown weary of the 80 hour work weeks, the rush to spend more, be the life of the party at each and every Holiday party, and the challenge to decorate more than the neighbors.
It does not take long to forget what is important. I miss that gift from Sydney's treatment.
It is time to take a big deep breath of purpose.
In a sense, it was calm.
In retrospect, it was almost even slow.
Now, I haven't forgotten everything. Although, my rosy colored history spectacles don't allow much of the pain and fear back in. I know I don't want to return. I also know we were busy and life was hectic.
But still, there was something different.
The beauty of Christmas then was its simplicity. The simple fact that we were together. In fact, that was all that really mattered. Christmas was about focusing on each other.
Today I feel like things are going in a 1000 different directions and I find myself yearning for a return to the basics. I just want to relax and be with my family. I have grown weary of the 80 hour work weeks, the rush to spend more, be the life of the party at each and every Holiday party, and the challenge to decorate more than the neighbors.
It does not take long to forget what is important. I miss that gift from Sydney's treatment.
It is time to take a big deep breath of purpose.
Thursday, December 2, 2010
A layman's perspective on the future of MIBG in neuroblastoma therapy
The last few weeks have been interesting on the neuroblastoma front. I have been part of several discussions on the future of MIBG therapy in neuroblastoma. Several of these discussions were in the research trenches but I also had the privilege of seeing Dr. Kate Matthay speak on the topic at Cook Children's the other night.
Secretly, I have always been a fan of MIBG therapy. I have seen many children with little hope for a cure have their lives saved in large part to this treatment. I know, without a doubt, that there are many children here today that would not have been without this treatment. For them, MIBG has been a miracle drug.
I am not alone with this insight.
There is a mounting army of survivors that can attest to the success of MIBG. Furthermore, there are many oncologists that have experienced these successes in children that they know they would likely have lost without the treatment. More and more are seeing the benefits of MIBG first hand.
As the research articles continue to flow from medical publications it is increasingly clear that MIBG will be an important part of neuroblastoma therapy in the future.
Many are aware of the toxicity of MIBG therapy. It is hard on counts and in many situations requires stem cell support. It is often this toxicity that has kept people from pursuing it as an option. However, now that the writing is on the wall that MIBG benefits may outweigh its side effects - especially for a certain group of ultra high risk patients - it should be a consideration. And, from what I am learning now, it looks as though it might be appropriate for all high risk patients.
As it stands now, MIBG therapy has a response rate of somewhere around 30 to 35%. That may not seem like a lot but, when you consider these response rates are based on the most heavily pretreated kiddos with the most resistant forms of the disease, that number starts to look better and better. Take this into consideration. Some of the best drugs we have for neuroblastoma, don't have a response rate as good as that. The old stand by, a combination of Topotecan and Cytoxan, has a response rate somewhere around 25% and our other relapse "go to" combination, Irinotecan and Temodar, only yields a response rate somewhere around 15%. Given those numbers, MIBG therapy begins to look really, really good - even considering the toxicity.
Make no mistake. MIBG is the most effective treatment we have in relapse when considering response rate. It is the toxicity cost that has to be weighed.
That is all fine and dandy but what really has intrigued me is the discussion of moving this treatment into up front therapy. Believe it or not, there is actually a study out of Europe that has looked at including MIBG at the very beginning of therapy. "Scarily toxic" you may say. However, "complete response" is what I have to say. It appears that MIBG may work even better in up front therapy and, as expected, response rates are even higher. Early data makes an argument that this could be the next big bump in survival.
Should MIBG therapy be one of the first things we do? Well, there are still some issues to work out. I think we need to get our stem cell collection completed before we hop into MIBG therapy to help reduce some of the secondary cancer risks. There are some logistical issues and other concerns as well. However, MIBG is on the horizon and it is closer than ever to being a mainstream treatment option for children with high risk disease.
Pilots are already offering MIBG in the up front window for ultra high risk kids and I would not be surprised to see MIBG as a component of a phase 3 trial as early as 2013.
Bottom line, if you have a child with high risk disease MIBG should be in the back of your mind. While today it is not for every child with neuroblastoma, it is certainly a strong option for a child with relapsed or refractory disease.
It is more ammo for your purpose gun.
Secretly, I have always been a fan of MIBG therapy. I have seen many children with little hope for a cure have their lives saved in large part to this treatment. I know, without a doubt, that there are many children here today that would not have been without this treatment. For them, MIBG has been a miracle drug.
I am not alone with this insight.
There is a mounting army of survivors that can attest to the success of MIBG. Furthermore, there are many oncologists that have experienced these successes in children that they know they would likely have lost without the treatment. More and more are seeing the benefits of MIBG first hand.
As the research articles continue to flow from medical publications it is increasingly clear that MIBG will be an important part of neuroblastoma therapy in the future.
Many are aware of the toxicity of MIBG therapy. It is hard on counts and in many situations requires stem cell support. It is often this toxicity that has kept people from pursuing it as an option. However, now that the writing is on the wall that MIBG benefits may outweigh its side effects - especially for a certain group of ultra high risk patients - it should be a consideration. And, from what I am learning now, it looks as though it might be appropriate for all high risk patients.
As it stands now, MIBG therapy has a response rate of somewhere around 30 to 35%. That may not seem like a lot but, when you consider these response rates are based on the most heavily pretreated kiddos with the most resistant forms of the disease, that number starts to look better and better. Take this into consideration. Some of the best drugs we have for neuroblastoma, don't have a response rate as good as that. The old stand by, a combination of Topotecan and Cytoxan, has a response rate somewhere around 25% and our other relapse "go to" combination, Irinotecan and Temodar, only yields a response rate somewhere around 15%. Given those numbers, MIBG therapy begins to look really, really good - even considering the toxicity.
Make no mistake. MIBG is the most effective treatment we have in relapse when considering response rate. It is the toxicity cost that has to be weighed.
That is all fine and dandy but what really has intrigued me is the discussion of moving this treatment into up front therapy. Believe it or not, there is actually a study out of Europe that has looked at including MIBG at the very beginning of therapy. "Scarily toxic" you may say. However, "complete response" is what I have to say. It appears that MIBG may work even better in up front therapy and, as expected, response rates are even higher. Early data makes an argument that this could be the next big bump in survival.
Should MIBG therapy be one of the first things we do? Well, there are still some issues to work out. I think we need to get our stem cell collection completed before we hop into MIBG therapy to help reduce some of the secondary cancer risks. There are some logistical issues and other concerns as well. However, MIBG is on the horizon and it is closer than ever to being a mainstream treatment option for children with high risk disease.
Pilots are already offering MIBG in the up front window for ultra high risk kids and I would not be surprised to see MIBG as a component of a phase 3 trial as early as 2013.
Bottom line, if you have a child with high risk disease MIBG should be in the back of your mind. While today it is not for every child with neuroblastoma, it is certainly a strong option for a child with relapsed or refractory disease.
It is more ammo for your purpose gun.
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