That is, effectively, good news.
If I am being honest, I had secretly hoped that it would have disappeared and everyone would have considered the CT scan from six weeks ago a freakish anomaly. So, when we were informed this afternoon that the spot was unchanged, both Cynthia and I felt a bit disappointed. But, to reiterate, this is, in fact, quite good news. Our doc convinced us of that: He was quite excited and persuasive in relating it to us. His point being, if it were cancer--left untreated for the last six weeks--it likely would have changed. That is to say, grown. It has not. It is the same faint spot, the same size, the same..."uncancerlike" appearance. So be it. It's not the All Clear that we were hoping for, but as we have so many times along the way of this journey, we'll certainly take it.
Andrew will resume his regular schedule of quarterly scans, which means we are looking at November or December for our next week of Scanxiety. In the meantime, we have soccer games to play, Lego's to build, school to attend, occupational therapy to work at, and Halloween costumes to plan.
Thank you for following and supporting us. We hope you have a great Fall!
Paul
Thursday, September 30, 2010
The Final Countdown
Thank you, Europe....
This is the last day to make a difference--our final push. The exciting news is that--with your help--Arms Wide Open has moved into 2nd place! We are in the money! Now, we have to hold on for the next 12 hours and maintain our position. PLEASE continue voting. PLEASE ask others to do the same.
As for our own story, Andrew and I went to City of Hope this morning, where they drew blood, took a urine sample and did a CT of his abdomen. He is at school currently and I am at work (can you sense how much I am getting done?) and we will return this afternoon, meet Cynthia and have our appointment with the doc to review the results. Please pray for good news. We will let you know.
Finish up strong. Thank you.
Paul
This is the last day to make a difference--our final push. The exciting news is that--with your help--Arms Wide Open has moved into 2nd place! We are in the money! Now, we have to hold on for the next 12 hours and maintain our position. PLEASE continue voting. PLEASE ask others to do the same.
As for our own story, Andrew and I went to City of Hope this morning, where they drew blood, took a urine sample and did a CT of his abdomen. He is at school currently and I am at work (can you sense how much I am getting done?) and we will return this afternoon, meet Cynthia and have our appointment with the doc to review the results. Please pray for good news. We will let you know.
Finish up strong. Thank you.
Paul
Monday, September 27, 2010
Push
All,
As you know, this is our third September to post regarding Childhood Cancer Awareness Month. This year, we find ourselves in the final few days of the month with a new and urgent plea: We need you to vote in the Pepsi Refresh Everything Project.
Let us explain: Pepsi has launched their Refresh Everything Project, where they are giving grants--in this case $250,000--to the top two vote-getting proposals. Arms Wide Open Childhood Cancer Foundation is a Neuroblastoma-specific charity that is currently sitting in 3rd place in the contest. Arms Wide Open has pledged to donate the full grant to fast-track promising cancer therapies currently being developed at Memorial Sloan Kettering Cancer Center in New York. Sloan Kettering is arguably the premier Neuroblastoma hospital in the world and they have been instrumental in devising many aspects of treatment that are in use today. A $250,000 grant in the world of a rare pediatric cancer would have a tremendous impact and translate into actual trials and potential treatments.
For us, the potential of this grant takes on added significance as we approach Andrew's re-scan. Strangely enough, it is scheduled for Thursday, September 30, which is also the last day to vote in the contest. While Andrew has not been treated at Sloan Kettering and we pray that he never is, the fact is that it is likely where we would find ourselves, in the event that we were dealing with a relapse. Clearly, part of our motivation here is selfish.
Just to reiterate, the contest ends at the end of the month, so this is our final push. How fitting would it be if a pediatric cancer cause actually won this event during Childhood Cancer Awareness Month? Said another way, what would that say if it didn't? If we can prevail upon you to please vote as many times as possible, we would be so grateful. The link is as follows:
www.refresheverything.com/armswideopenchildhoodcancerfoundation
You have to complete a one-time registration to vote through the site. You can also vote via text (102653 to PEPSI (73774)) and via Facebook app. In fact, you are allowed to vote using each method one time per day. Please use all three and please spread the word to any friends, families, groups, offices, churches, schools, etc. that you may hold sway over.
Please keep Andrew in your thoughts and prayers this week as we go in Thursday hoping for some good, clean, benign resolution to his liver spot. Thank you, as always, for your support.
Paul & Cynthia
As you know, this is our third September to post regarding Childhood Cancer Awareness Month. This year, we find ourselves in the final few days of the month with a new and urgent plea: We need you to vote in the Pepsi Refresh Everything Project.
Let us explain: Pepsi has launched their Refresh Everything Project, where they are giving grants--in this case $250,000--to the top two vote-getting proposals. Arms Wide Open Childhood Cancer Foundation is a Neuroblastoma-specific charity that is currently sitting in 3rd place in the contest. Arms Wide Open has pledged to donate the full grant to fast-track promising cancer therapies currently being developed at Memorial Sloan Kettering Cancer Center in New York. Sloan Kettering is arguably the premier Neuroblastoma hospital in the world and they have been instrumental in devising many aspects of treatment that are in use today. A $250,000 grant in the world of a rare pediatric cancer would have a tremendous impact and translate into actual trials and potential treatments.
For us, the potential of this grant takes on added significance as we approach Andrew's re-scan. Strangely enough, it is scheduled for Thursday, September 30, which is also the last day to vote in the contest. While Andrew has not been treated at Sloan Kettering and we pray that he never is, the fact is that it is likely where we would find ourselves, in the event that we were dealing with a relapse. Clearly, part of our motivation here is selfish.
Just to reiterate, the contest ends at the end of the month, so this is our final push. How fitting would it be if a pediatric cancer cause actually won this event during Childhood Cancer Awareness Month? Said another way, what would that say if it didn't? If we can prevail upon you to please vote as many times as possible, we would be so grateful. The link is as follows:
www.refresheverything.com/armswideopenchildhoodcancerfoundation
You have to complete a one-time registration to vote through the site. You can also vote via text (102653 to PEPSI (73774)) and via Facebook app. In fact, you are allowed to vote using each method one time per day. Please use all three and please spread the word to any friends, families, groups, offices, churches, schools, etc. that you may hold sway over.
Please keep Andrew in your thoughts and prayers this week as we go in Thursday hoping for some good, clean, benign resolution to his liver spot. Thank you, as always, for your support.
Paul & Cynthia
Tuesday, September 7, 2010
Monday, September 6, 2010
Begin The Begin
A new school year starts tomorrow.
That statement contains so much: So much excitement and enthusiasm. So much nervousness and fear. So much promise.... We are a bit in awe of this time of year, if only because we are so grateful for it. It marks another opportunity to grow and learn and--with luck--thrive. We dare not take this time for granted.
Lucia will be a second grader and Andrew a kindergartner and, for the first time, they will be in the same school at the same time. Despite the fact that it will be only her second year at this school, Lucia considers herself a veteran there. She is utterly comfortable and in her element and has made so many good friends in her class, she cannot wait to pick up where she left off a few short months ago. Meanwhile, Andrew is excited for the change and to be joining his big sister at the "big kid" school, but as is typical of Andrew, he is far more reserved and reluctant than his sister, so a fair amount of hesitation is wrapped around (read strangling) his curiosity. Still, we're sure (read hoping) that after a few days he'll have settled right in....
What takes our breath away in this little adventure of ours is the concept that we have children this old, achieving these milestones. What shape does time take to elapse like this? Don't get me wrong, I recognize that our kids are not old and that we have a ridiculous amount of school (and other stuff) ahead of us, but it just seems that this summer moved quickly and that--quite suddenly--Lucia is a second-grader. And quite frankly, that--odds-defyingly--Andrew is entering kindergarten. We are shocked and bewildered in only the best of ways.
And so we look forward to tomorrow, but also feel it is important to take stock of our sunsetting summer. We owe a lot to this summer: A fantastic family vacation to get in touch with some of our roots; a fun and relaxing getaway to the river; the games and mud and adventures and mud and mud of camp; a couple of family bike rides; a recent week-long sleepover for the kids with their cousins, highlighted by a day at Disneyland.... Ironically, what becomes clear about this summer is that it is notable for its yawning ordinariness. This is not to say that its particular events or activities were ordinary--indeed, they were quite special--simply that this is pretty standard summertime fare and was not punctuated or otherwise interrupted by cancer. Perhaps this is how time manages to race by so rapidly...?
Of course, while our summer did consist largely of the above, it did not consist solely of the above. We certainly came into a rough patch last month with Andrew's CT scan revealing an as-yet unidentified spot on his liver. We are still a few weeks from re-scanning that spot to check on it and, while we have good reason to believe it is not the worst, it is not easy to exist in this odd, suspended truce. In the meantime, we also received the results of Andrew's neuro-psych evaluation, which indicated that he has some specific areas of weakness, which we will need to work on through occupational therapy and visual development therapy. It is unclear whether the deficits that exist in these areas are the result of his treatment, i.e. as side effects of the chemotherapy he received, or are the result of his treatment, i.e. he missed countless developmental milestones, because he spent almost two years living in and out of a hospital, while his peers were running around, socializing, exploring, etc. On some level, it doesn't matter, because the therapy is largely the same, but on another level, we fervently hope and believe it is the latter and that he will make up ground quickly, once he is given the assistance he needs. It is with these "trouble spots"--the liver and the learning--that we need your thoughts and prayers most.
On that note, we also have to ask for your attention in recognizing, once again, that September is Pediatric Cancer Awareness Month. If you are reading this, please do whatever you can to share with others this fact and convey how little recognition and funding pediatric cancer--much less Neuroblastoma--receives. It is truly appalling. Most of you reading will not know this--we would not expect you to know this--but in the Neuroblastoma world, this summer was not an easy time: Many kids have relapsed. Many kids have run out of options and been sent home. Many kids have grown too tired to fight. Many kids have died. FAR. TOO. MANY. We are so, so fortunate to have our children and be sending them off to school in the morning. It is a thrilling time. But, there are others who lost that opportunity this summer, who will not experience that excitement or joy tomorrow. We hope that they find some peace, but they would have rather found a cure. Please do what you can. Thank you.
Paul & Cynthia
That statement contains so much: So much excitement and enthusiasm. So much nervousness and fear. So much promise.... We are a bit in awe of this time of year, if only because we are so grateful for it. It marks another opportunity to grow and learn and--with luck--thrive. We dare not take this time for granted.
Lucia will be a second grader and Andrew a kindergartner and, for the first time, they will be in the same school at the same time. Despite the fact that it will be only her second year at this school, Lucia considers herself a veteran there. She is utterly comfortable and in her element and has made so many good friends in her class, she cannot wait to pick up where she left off a few short months ago. Meanwhile, Andrew is excited for the change and to be joining his big sister at the "big kid" school, but as is typical of Andrew, he is far more reserved and reluctant than his sister, so a fair amount of hesitation is wrapped around (read strangling) his curiosity. Still, we're sure (read hoping) that after a few days he'll have settled right in....
What takes our breath away in this little adventure of ours is the concept that we have children this old, achieving these milestones. What shape does time take to elapse like this? Don't get me wrong, I recognize that our kids are not old and that we have a ridiculous amount of school (and other stuff) ahead of us, but it just seems that this summer moved quickly and that--quite suddenly--Lucia is a second-grader. And quite frankly, that--odds-defyingly--Andrew is entering kindergarten. We are shocked and bewildered in only the best of ways.
And so we look forward to tomorrow, but also feel it is important to take stock of our sunsetting summer. We owe a lot to this summer: A fantastic family vacation to get in touch with some of our roots; a fun and relaxing getaway to the river; the games and mud and adventures and mud and mud of camp; a couple of family bike rides; a recent week-long sleepover for the kids with their cousins, highlighted by a day at Disneyland.... Ironically, what becomes clear about this summer is that it is notable for its yawning ordinariness. This is not to say that its particular events or activities were ordinary--indeed, they were quite special--simply that this is pretty standard summertime fare and was not punctuated or otherwise interrupted by cancer. Perhaps this is how time manages to race by so rapidly...?
Of course, while our summer did consist largely of the above, it did not consist solely of the above. We certainly came into a rough patch last month with Andrew's CT scan revealing an as-yet unidentified spot on his liver. We are still a few weeks from re-scanning that spot to check on it and, while we have good reason to believe it is not the worst, it is not easy to exist in this odd, suspended truce. In the meantime, we also received the results of Andrew's neuro-psych evaluation, which indicated that he has some specific areas of weakness, which we will need to work on through occupational therapy and visual development therapy. It is unclear whether the deficits that exist in these areas are the result of his treatment, i.e. as side effects of the chemotherapy he received, or are the result of his treatment, i.e. he missed countless developmental milestones, because he spent almost two years living in and out of a hospital, while his peers were running around, socializing, exploring, etc. On some level, it doesn't matter, because the therapy is largely the same, but on another level, we fervently hope and believe it is the latter and that he will make up ground quickly, once he is given the assistance he needs. It is with these "trouble spots"--the liver and the learning--that we need your thoughts and prayers most.
On that note, we also have to ask for your attention in recognizing, once again, that September is Pediatric Cancer Awareness Month. If you are reading this, please do whatever you can to share with others this fact and convey how little recognition and funding pediatric cancer--much less Neuroblastoma--receives. It is truly appalling. Most of you reading will not know this--we would not expect you to know this--but in the Neuroblastoma world, this summer was not an easy time: Many kids have relapsed. Many kids have run out of options and been sent home. Many kids have grown too tired to fight. Many kids have died. FAR. TOO. MANY. We are so, so fortunate to have our children and be sending them off to school in the morning. It is a thrilling time. But, there are others who lost that opportunity this summer, who will not experience that excitement or joy tomorrow. We hope that they find some peace, but they would have rather found a cure. Please do what you can. Thank you.
Paul & Cynthia
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