An excerpt from today's MiBG report:
1. Continued negative I-123 MIBG scan of the whole body including the
liver and both lower extremities. There is persistent benign
physiologic uptake in the right adrenal gland which is unchanged from
prior exams. There is no evidence of recurrent or metastatic
neuroblastoma noted on this exam. When correlated with the CT scan of
the chest, abdomen, and pelvis of the same date, there is no correlate
for the possible lesion seen in the left hepatic lobe.
In other words, this is good news. An MiBG scan is neuroblastoma-specific, so the fact that it does not register the spot from the CT provides us a fair amount of relief. It still doesn't tell us what that spot is and there still is an outside chance (less than 10%) that it could be neuroblastoma, despite the fact that it is MiBG-negative, but those are much better odds than what we were considering last week.... In short, we'll take it!
Five and a half weeks to go until re-scan. Please keep Andrew in your thoughts.
Paul
Wednesday, August 25, 2010
Sunday, August 22, 2010
Liver Spot
This week did not end the way we had hoped: One of Andrew's scans this week revealed a spot on his liver. It is unknown at this time what, exactly, it is and, specifically, whether it is Neuroblastoma. All other tests and scans appear to be normal, though we are awaiting a final report from the radiologist on his MiBG scan.
Our oncologist met with us on Friday to review the images and talk about what it all means. His stance throughout the appointment was that, while this is scary, he did not necessarily feel that it was a case of relapse. He had his reasons, too: Its location in the liver, its ill-defined appearance, etc. But, with all of that said, anytime a child who has had cancer has a "spot" appear anywhere, there is the strong suspicion that it is more cancer--especially when you are dealing with a cancer in which greater than 50% of its survivors will relapse....
Where we are left at this moment is in a certain amount of shock and disbelief and fear. Strangely, we are not panicked. We are taking all of this in, we are doing our research, and consulting with others far more knowledgeable than ourselves. We have come across several stories from other NB families who have had "relapse" in the liver, only to discover the spots were benign. We have even been directed to some published articles about this phenomenon occurring in NB kids post-treatment. We are taking some level of comfort from the fact that the rest of his lab work was normal. Of course, we are eager to read the final report on the MiBG scan, as it will either further comfort us or corroborate the findings of the CT scan. In short, we are hoping for the best, but planning for the worst.
As we left it with our oncologist on Friday--and barring any surprising news in the meantime--the plan will be to re-scan in six weeks, rather than the three-month schedule we were on. At that time, we will hope the spot has resolved itself. Until that time, we will grind through the interminable span that is the next six weeks and try not to let the "what ifs" consume us.
We need your thoughts, prayers, positive energy, crossed fingers--whatever you have to offer--that this is nothing more than a false alarm. We will gladly take countless fire drills as we move forward, we just don't want any more real fires. Besides, the next six weeks are extremely eventful for Andrew: He is going to Disneyland with his cousins, he starts kindergarten, he is playing in AYSO for the first time ... he's got too much (living) to do to be sick again.
Paul
Our oncologist met with us on Friday to review the images and talk about what it all means. His stance throughout the appointment was that, while this is scary, he did not necessarily feel that it was a case of relapse. He had his reasons, too: Its location in the liver, its ill-defined appearance, etc. But, with all of that said, anytime a child who has had cancer has a "spot" appear anywhere, there is the strong suspicion that it is more cancer--especially when you are dealing with a cancer in which greater than 50% of its survivors will relapse....
Where we are left at this moment is in a certain amount of shock and disbelief and fear. Strangely, we are not panicked. We are taking all of this in, we are doing our research, and consulting with others far more knowledgeable than ourselves. We have come across several stories from other NB families who have had "relapse" in the liver, only to discover the spots were benign. We have even been directed to some published articles about this phenomenon occurring in NB kids post-treatment. We are taking some level of comfort from the fact that the rest of his lab work was normal. Of course, we are eager to read the final report on the MiBG scan, as it will either further comfort us or corroborate the findings of the CT scan. In short, we are hoping for the best, but planning for the worst.
As we left it with our oncologist on Friday--and barring any surprising news in the meantime--the plan will be to re-scan in six weeks, rather than the three-month schedule we were on. At that time, we will hope the spot has resolved itself. Until that time, we will grind through the interminable span that is the next six weeks and try not to let the "what ifs" consume us.
We need your thoughts, prayers, positive energy, crossed fingers--whatever you have to offer--that this is nothing more than a false alarm. We will gladly take countless fire drills as we move forward, we just don't want any more real fires. Besides, the next six weeks are extremely eventful for Andrew: He is going to Disneyland with his cousins, he starts kindergarten, he is playing in AYSO for the first time ... he's got too much (living) to do to be sick again.
Paul
Tuesday, August 10, 2010
What a difference a day makes
Well, no sooner had I posted yesterday's update than our world went pear-shaped again today. Allow me to explain:
Lucia and Andrew have been a little bit sick--sore throats, headaches, fevers, etc.--for the past few days. In short, nothing urgent, seemingly just routine colds. Nonetheless, Cynthia went ahead and made an appointment with the pediatrician today to get them checked out, as she was concerned that they might have ear or sinus infections that would need treatment with antibiotics. She took them in today at noon.
When interviewed by the nurse, our children--being our children--launched into a full description and timeline of their symptoms, complaints, feelings, etc. To be clear, Lucia does this to be competitive; Andrew does this from experience. Regardless, the nurse was impressed. Next, arrived the pediatrician. As a reminder, this is the same pediatrician that first caught Andrew's tumor. He is excellent, but--understandably--also hyper-aware of Andrew's history. He examined them both and, in trying to see the back of Andrew's throat, it came out that Andrew could not tilt his head back, because his neck was too stiff and hurt too much. Oy, here we go again....
The doctor, recognizing the potential issue, turned to Cynthia to explain what he was thinking, only to have Cynthia respond that she already had a good hunch: Meningitis. Yep, meningitis. Our cancer-surviving kid could now be dealing with meningitis--of course. The next step was determining which one, viral (yay!) or bacterial (boo!). What a bizarre world we inhabit, eh?
This brings us to everyone's favorite quotable film: Spinal Tap. Andrew's spinal tap goes to 11! I don't even know what that means, but I wanted to put it in.... So, arrangements had to be made for Andrew to go over to Huntington Hospital for a spinal tap. Only...wait for it...because of Andrew's "history," when there is a call for a spinal tap, they first have to look to see if there is any cancer in his brain or CNS, as they don't want to poke into that space and potentially upset it (or something to that effect). So, before they could move forward with the spinal tap, they needed first to get a CT scan of his head. And so, they were off for a CT at Huntington Hospital with Andrew expressing fairly mundane symptoms.
For those that don't know, this is precisely how Andrew's--our--journey began on January 16, 2008. Same routine "sick kid" appointment, same pediatrician, same trip over to Huntington, same CT room. Today was an ugly, ugly, ugly day of deja vu.
Thankfully, we have a very different resolution: The CT was clear. Except that it showed his sinuses to be terribly inflamed (Go, mother's intuition!). The spinal tap was done and it, too, was negative for bacterial meningitis. It is positive for a very sore back for Andrew. In short, Andrew is fine, barring a double ear and sinus infection that will be treated with a standard course of antibiotics. Lucia has strep throat, also to be treated with a standard course of antibiotics. Cynthia and I are relieved, but emotionally wrecked and spent. Cynthia, especially, as she dealt with it firsthand--just like two and a half years ago.
In light of yesterday's post, the irony is that we got our look at his brain a week early, though under very different circumstances than we would have ever imagined. I'm not sure that it was a decent trade, but it is one less thing to do and worry about next week. We'll have enough anxiety as it is, so the silver lining here is knowing that there is one less part of his body to worry about for relapse this time around.... We'll take it.
Thank you for listening.
Paul
Lucia and Andrew have been a little bit sick--sore throats, headaches, fevers, etc.--for the past few days. In short, nothing urgent, seemingly just routine colds. Nonetheless, Cynthia went ahead and made an appointment with the pediatrician today to get them checked out, as she was concerned that they might have ear or sinus infections that would need treatment with antibiotics. She took them in today at noon.
When interviewed by the nurse, our children--being our children--launched into a full description and timeline of their symptoms, complaints, feelings, etc. To be clear, Lucia does this to be competitive; Andrew does this from experience. Regardless, the nurse was impressed. Next, arrived the pediatrician. As a reminder, this is the same pediatrician that first caught Andrew's tumor. He is excellent, but--understandably--also hyper-aware of Andrew's history. He examined them both and, in trying to see the back of Andrew's throat, it came out that Andrew could not tilt his head back, because his neck was too stiff and hurt too much. Oy, here we go again....
The doctor, recognizing the potential issue, turned to Cynthia to explain what he was thinking, only to have Cynthia respond that she already had a good hunch: Meningitis. Yep, meningitis. Our cancer-surviving kid could now be dealing with meningitis--of course. The next step was determining which one, viral (yay!) or bacterial (boo!). What a bizarre world we inhabit, eh?
This brings us to everyone's favorite quotable film: Spinal Tap. Andrew's spinal tap goes to 11! I don't even know what that means, but I wanted to put it in.... So, arrangements had to be made for Andrew to go over to Huntington Hospital for a spinal tap. Only...wait for it...because of Andrew's "history," when there is a call for a spinal tap, they first have to look to see if there is any cancer in his brain or CNS, as they don't want to poke into that space and potentially upset it (or something to that effect). So, before they could move forward with the spinal tap, they needed first to get a CT scan of his head. And so, they were off for a CT at Huntington Hospital with Andrew expressing fairly mundane symptoms.
For those that don't know, this is precisely how Andrew's--our--journey began on January 16, 2008. Same routine "sick kid" appointment, same pediatrician, same trip over to Huntington, same CT room. Today was an ugly, ugly, ugly day of deja vu.
Thankfully, we have a very different resolution: The CT was clear. Except that it showed his sinuses to be terribly inflamed (Go, mother's intuition!). The spinal tap was done and it, too, was negative for bacterial meningitis. It is positive for a very sore back for Andrew. In short, Andrew is fine, barring a double ear and sinus infection that will be treated with a standard course of antibiotics. Lucia has strep throat, also to be treated with a standard course of antibiotics. Cynthia and I are relieved, but emotionally wrecked and spent. Cynthia, especially, as she dealt with it firsthand--just like two and a half years ago.
In light of yesterday's post, the irony is that we got our look at his brain a week early, though under very different circumstances than we would have ever imagined. I'm not sure that it was a decent trade, but it is one less thing to do and worry about next week. We'll have enough anxiety as it is, so the silver lining here is knowing that there is one less part of his body to worry about for relapse this time around.... We'll take it.
Thank you for listening.
Paul
Sunday, August 8, 2010
Hello It's Me
I've thought about us for a long, long time...sorry, I digress. Already. But, it has been a while--too long, in fact. My work has kept me ridiculously busy for most of the summer. It is a gift and I am grateful, but it has severely cut into my blogging time (and family time, cycling time, reading time, personal grooming and hygiene time, etc.).
Much has happened since our last post: Andrew graduated from pre-kindergarten, we traveled to Sicily and Rome for our family vacation (not in that order), the kids have been going to summer camp and we even managed to squeeze in a Fourth of July trip to Three Rivers, a small town (on a river) near Sequoia--a ton of fun. Of course, there's also been a fair amount of swimming, bike riding, cooking out, etc. And, the kids' cousins from Philadelphia will be out for a visit in a couple of weeks and there is talk of a group adventure to Disneyland. And maybe Legoland. A summary in pictures would go something like this:
Andrew pointing out snakeskin in the wall at the villa in Sicily.
Lucia at "The Godfather" church in Sicily, which happens to share her name!
Cruising the Greek and Roman ruins in Siracusa.
The view of Ortygia from the ruins in Siracusa.
Gelato.
Need we say more?
Enjoying the black sand beach on the island of Vulcano.
"Rabbit ears" in the Pantheon, while Andrew focuses on his lava rock from Mount Etna.
Giving the thumbs up to linguine with clams.
Andrew making the empty clam shells talk.
The requisite coin into the Trevi Fountain for a wish.
Same idea, less enthusiasm.
Concentrating on their first ever audio tour--at the Colosseum, no less!
The famous Vatican peacock. Probably.
St. Peter's Square.
Chasing pigeons, as one does in Italy...
Nightfall in Rome. With (attempted) rabbit ears.
First day of summer camp.
Van pick-up for Andrew.
Van pick-up for a much more lively Lucia.
Taking the plunge at Three Rivers.
Taking The PLUNGE at Three Rivers.
There are no pictures of pre-kindergarten graduation, because, well, Andrew didn't go. Don't get me wrong, we had every intention of going and savoring that moment--the way he continues to make progress and move forward. We came back from Italy just in time for him to attend the last couple of days of school and graduate. Unfortunately, we came back to a notice from the school that a child there had come up (down?) with the mumps. Or measles. Whatever it was, Andrew had not been re-vaccinated against it, so it was not safe for him to attend. And that is how we missed pre-kindergarten graduation. Hindsight being what it is, we should have just stayed in Italy longer. As a side note, he did end up getting vaccinated later this summer, so I don't suppose we have to worry about that series of events happening again....
Also on our agenda this summer has been a neuropsych evaluation of Andrew. This is a work in progress, as it entails multiple sessions with the doctor over the course of several weeks. Essentially, there are two rationales behind this: The first is to get an assessment of where he is today and determine if he will need any special assistance or consideration in school now (e.g. anything from hearing aids and occupational therapy to the best place for him to sit in class), and the second is to establish a "baseline" for him today against which we can judge future evaluations. He will be tested every few years. We continue to learn about the challenges that Andrew may face going forward and issues with "chemo brain" and insufficient "executive function" are concepts that are now coming onto our radar. We are doing our best to prepare ourselves to deal with them effectively.
In the immediate future, though, we have the waning weeks of summer vacation to enjoy still. There are a few more days of camp and, as I mentioned, an adventure to Disneyland or Legoland to be had in a couple of weeks. What I had not mentioned is that the road to Disneyland goes through Scan Week. Next week, it will be upon us. And, it is a little bit different this time: In addition to his CT and his MiBG scans (and blood and urine work), we have requested an MRI of his brain. We are hearing more and more about NB relapses occurring in the brain and/or central nervous system, so--for peace of mind--we want to take a look at that area and make sure we don't see anything. The unfortunate thing about an MRI is that it will require sedation, so that Andrew doesn't move. We are not crazy about that aspect, not only because sedation presents its own risks, but also because of how much more complicated it makes the day: Andrew must be fasting, it adds significant time to the day, etc. Again, it will be totally worthwhile in the end, but wish us luck as we get there.
As always, thank you for reading along, following our story and supporting us. We hope that your summers have been enjoyable, and perhaps, even a bit lazy. Take care. We will post again after scans. Fingers crossed, please.
Paul
Much has happened since our last post: Andrew graduated from pre-kindergarten, we traveled to Sicily and Rome for our family vacation (not in that order), the kids have been going to summer camp and we even managed to squeeze in a Fourth of July trip to Three Rivers, a small town (on a river) near Sequoia--a ton of fun. Of course, there's also been a fair amount of swimming, bike riding, cooking out, etc. And, the kids' cousins from Philadelphia will be out for a visit in a couple of weeks and there is talk of a group adventure to Disneyland. And maybe Legoland. A summary in pictures would go something like this:
Andrew pointing out snakeskin in the wall at the villa in Sicily.
Lucia at "The Godfather" church in Sicily, which happens to share her name!
Cruising the Greek and Roman ruins in Siracusa.
The view of Ortygia from the ruins in Siracusa.
Gelato.
Need we say more?
Enjoying the black sand beach on the island of Vulcano.
"Rabbit ears" in the Pantheon, while Andrew focuses on his lava rock from Mount Etna.
Giving the thumbs up to linguine with clams.
Andrew making the empty clam shells talk.
The requisite coin into the Trevi Fountain for a wish.
Same idea, less enthusiasm.
Concentrating on their first ever audio tour--at the Colosseum, no less!
The famous Vatican peacock. Probably.
St. Peter's Square.
Chasing pigeons, as one does in Italy...
Nightfall in Rome. With (attempted) rabbit ears.
First day of summer camp.
Van pick-up for Andrew.
Van pick-up for a much more lively Lucia.
Taking the plunge at Three Rivers.
Taking The PLUNGE at Three Rivers.
There are no pictures of pre-kindergarten graduation, because, well, Andrew didn't go. Don't get me wrong, we had every intention of going and savoring that moment--the way he continues to make progress and move forward. We came back from Italy just in time for him to attend the last couple of days of school and graduate. Unfortunately, we came back to a notice from the school that a child there had come up (down?) with the mumps. Or measles. Whatever it was, Andrew had not been re-vaccinated against it, so it was not safe for him to attend. And that is how we missed pre-kindergarten graduation. Hindsight being what it is, we should have just stayed in Italy longer. As a side note, he did end up getting vaccinated later this summer, so I don't suppose we have to worry about that series of events happening again....
Also on our agenda this summer has been a neuropsych evaluation of Andrew. This is a work in progress, as it entails multiple sessions with the doctor over the course of several weeks. Essentially, there are two rationales behind this: The first is to get an assessment of where he is today and determine if he will need any special assistance or consideration in school now (e.g. anything from hearing aids and occupational therapy to the best place for him to sit in class), and the second is to establish a "baseline" for him today against which we can judge future evaluations. He will be tested every few years. We continue to learn about the challenges that Andrew may face going forward and issues with "chemo brain" and insufficient "executive function" are concepts that are now coming onto our radar. We are doing our best to prepare ourselves to deal with them effectively.
In the immediate future, though, we have the waning weeks of summer vacation to enjoy still. There are a few more days of camp and, as I mentioned, an adventure to Disneyland or Legoland to be had in a couple of weeks. What I had not mentioned is that the road to Disneyland goes through Scan Week. Next week, it will be upon us. And, it is a little bit different this time: In addition to his CT and his MiBG scans (and blood and urine work), we have requested an MRI of his brain. We are hearing more and more about NB relapses occurring in the brain and/or central nervous system, so--for peace of mind--we want to take a look at that area and make sure we don't see anything. The unfortunate thing about an MRI is that it will require sedation, so that Andrew doesn't move. We are not crazy about that aspect, not only because sedation presents its own risks, but also because of how much more complicated it makes the day: Andrew must be fasting, it adds significant time to the day, etc. Again, it will be totally worthwhile in the end, but wish us luck as we get there.
As always, thank you for reading along, following our story and supporting us. We hope that your summers have been enjoyable, and perhaps, even a bit lazy. Take care. We will post again after scans. Fingers crossed, please.
Paul
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