This post promises to be long and rangy. Sorry...consider yourselves warned. It's not what I had envisioned for this post, when I was thinking about the need to make it a few weeks ago, but our situation is not what I had expected it to be a few weeks ago, so I must adapt this post to present circumstances. After all, if we have learned anything over the last two years and eleven months, it is how to be flexible and deal with change.
You see, prior to Thanksgiving, it occurred to me that we needed to post here and give you an update on our life: How much the kids were enjoying school, how their soccer seasons went, our plans for the Thanksgiving holiday, etc. Perhaps most importantly, I planned to give thanks for Health. I also would have given you notice of our pending week of regular quarterly scans, just to keep you in the loop. Of course, I got busy and/or distracted (I'm guilty of being a bit of a procrastinator), Thanksgiving came and went (we had a fantastic time, incidentally), and no such post was made.
Enter last week: Scans. Andrew completed all scans and tests with good energy and (mostly) good attitude. He did not like being woken up at 5AM to drink barium, but other than that, he was cooperative and willing (or at least willing to be bribed). On Friday, we met with our oncologist to review the results and this is where--for the 4th time now, for those of you keeping track of these stats--it all went a bit pear-shaped on us: The CT revealed a new spot on his lung. Before, I break down and start crying rather than typing, the results were not all bad: There was improvement in the spot on his liver, shrinking from 10mm to 6mm. Moreover, the rest of his blood and urine results were utterly normal. In fact, his hemoglobin was the highest it's been since he was an infant, pre-cancer and pre-treatment. And, the MiBG scan was negative. Nonetheless, there it is: A spot--an ugly, unwelcome spot--on his right lung.
Now, as our oncologist pointed out, the fact that the liver spot appears to be resolving is a huge break for us. As he said, Cancer doesn't get smaller. So, whatever the liver spot is/was, we can begin to look past it and we can console ourselves that at least we are not dealing with two spots now, but only one. As with the spot on the liver when it first presented itself, our oncologist--while concerned--is not quite ready to call this spot Neuroblastoma. Again, similar to his initial assessment of the liver spot, his sense of this new one is that it doesn't necessarily have the "look" of cancer: It is not hard or defined in an obvious way that cancer would be. Is that anything that we can hang our hat on? No, not really, but we are certainly hoping and praying that his instincts continue to prove correct.
In terms of what's next, well, there's Christmas. But more on that later. The plan from here will be to scan again in six weeks and see what we are dealing with then. There is a fairly random list of possible explanations for this (cold, flu, pneumonia, TB, fungal infection, etc.) other than cancer, so we will hope that, if it is one of those, it will have run its course or expressed itself more clearly by then. If the spot remains or, God forbid, is worse, then the procedure will be to biopsy it and confirm what we are dealing with. I don't yet have the courage to consider how they perform a lung biopsy, so I will deal with that only if the time comes. Ironically (or perhaps not)--again for those keeping score at home--the date six weeks from the date of this CT will be January 18. I wish I knew why we keep coming back to that....
While I am not prepared to call this latest setback in our journey devastating, it is certainly taking its toll on me. I don't know much about it, but my perception of a lung metastasis is that it is bad and difficult to deal with. Certainly, I have a notion that it was my dad's own lung metastasis/es that ultimately got to him. This is where I am struggling. I am also struggling with sharing: Sharing this "development" with everyone. Since Friday--when we received this news--I have been asked, socially, by several people how everything is going with us and is Andrew still doing well? The thing is, their questions seem to come with an expectation that the answer is that we continue to be fine. He looks fine, he acts fine and how can he/we be anything else after this long? And it is so very hard to want to say anything other than that back, despite the fact that I am screaming in my head that, No, there is a new spot on his lung and we don't know what it is and I am afraid for what could come next for us!!! And yet, I don't want to be alarmist--no Chicken Little here--either. It's been almost three years since Andrew was diagnosed. We had numerous scares with his life during treatment. And we have had two scares post-treatment. Now, we have this and we pray that it, too, proves to be a scare. But, at what point do people not compute this stuff anymore? When does everyone reach capacity with our trials and tribulations, these headfakes and non-event events, and move on? Don't get me wrong, I know that people care: They care about Andrew. They care about us. They care about what happens. Of course they do. But we go through our days, everyday, feeling like we're holding our breath waiting for...and it's not possible (nor would I expect this of anyone) for others to live with that same feeling if they don't have to. But I feel that is a divide that grows daily between "us" and "them" and it leads to the kind of awkward moments that I have muddled through since Friday. (Incidentally, what is the protocol for telling someone that your kid might have just suffered a relapse when they ask how he's doing at a holiday party?)
Christmas will be here in less than two weeks and the kids are so (too?!) excited; you can almost hear a buzzing coming off of them. We have decorated inside and out, made our lists and our wishes ("health," please), and are making ready for Santa a little bit more each day. Already they have a hard time falling asleep at night and already they have started to wake up early to check the latest status of the Christmas Tree (we wrap while they are sleeping, so the tree evolves each night). Obviously, the kids are looking forward to gifts and treats and the special magic of Santa Claus, but days like Friday serve as a jarring reminder--at least to Cynthia and me--that the true beauty of Christmas lies in the fact that we are together. Whatever strange limbo-like position we may find ourselves in this Christmas, we will celebrate and celebrate fully, because, while Andrew may have cancer, there are countless others we know of right now that do have cancer and they do not get a holiday from their fight. In that regard, our gratitude is immense.
I cannot let this moment pass without serving up my annual reminder to please give and give generously if you can this holiday season. There are so many worthwhile and deserving organizations that need our support and commitment and I hope you will provide whatever you comfortably can. As you know, we have our list of preferred charities and foundations; I will not reiterate them here (please refer back to our post from last year, if necessary), nor will I belabor this any more. Thank you for anything you are able to do.
Andrew surprised me the other morning at breakfast, by sitting down at the kitchen table while humming We Will Rock You. I cannot make this stuff up. Where he had heard it and why he had latched onto it and woke up with it in his head, I have no idea. I told him that was a great song and when we drove to school that morning, I played him that (during which he had to correct his sister--No, Lucia, it's not 'blood' on your face, it's 'MUD' on your face), followed by We Are The Champions. (They work together, like chocolate and peanut butter). To my surprise, he didn't really care for We Are The Champions--which he let me know in no uncertain terms--and instead asked if I had the song that went like this.... At which point, he proceeded to hum Eye Of The Tiger, which was impressive in that he was able to hum that melody while We Are The Champions was still playing. I find that hard to do. This is a song he knew and remembered from watching a Lego race car video on YouTube while he was in treatment. Andrew amazes me this way on a regular basis: He has forgotten so much of what he went through in treatment--the incisions and needle pricks and nausea and baldness--yet he remembers this song from a two-minute YouTube video that he watched two years ago. I did not have that song on me, but was prepared with it (what was life like before iTunes?) the next day, when we drove together again. We listened to Eye Of The Tiger and then back to We Will Rock You and then I started trying to feel him out for what songs caught his attention. Assuming he favored big, guitar-driven, rock anthem-esque songs, I played him some Zeppelin (Kashmir), ZZ Top (La Grange), more Queen (Bicycle Race), etc. He wasn't really feeling any of it (though he's coming around on Bicycle Race, but only because there's a line about Star Wars). Then he asks me:
Are there any other animal songs?
Animal songs?
Yeah, like the tiger one....
Oh--. Sure, I've got Crocodile Rock, Wild Horses, Grey Seal, Monkey...
Any bird ones?
Birds...?
Yeah, birds, I really like birds, dad.
OK, bird songs: Like, Blackbird?
Can we hear that one?
Of course, Blackbird it is.
And that was the start of us working our way through as many "bird" songs as I could come up with: Bluebird, Fly Like An Eagle, Dodo, Canary In A Coalmine, Skyline Pigeon, etc. I even tried to work in Counting Crows and Black Crowes, but he didn't like them as much since the songs didn't have birds in them. Needless to say, his interest in music is not quite at the level I thought it was, but it's a good start nonetheless. Perhaps most importantly, he continues to come back to Eye Of The Tiger as his favorite. All things considered, I think that's fitting. And I derive some meager comfort and satisfaction out of believing there is some significance to the fact that the song he likes most is by a band called, Survivor. That, and I don't think there's a way that I could get him into Gloria Gaynor.... Yet.
Merry Christmas to all.
Paul
Monday, December 13, 2010
Monday, October 18, 2010
Pablove Rides Again
Last year, we introduced you to our friends, Jeff and Jo Ann, who were inspired to create the Pablove organization in honor of their son, Pablo, who they lost to Wilms' Tumor last year, just after his sixth birthday. The goal of his foundation is to raise awareness of pediatric cancer in general, fund research, and to create music, art and play programs to offer better quality of life for children in treatment for cancer. In short, it is a noble and good and profoundly personal cause for Jeff and Jo Ann.
Last year, Jeff, an avid cyclist, rode his bike across the country--from Florida to California--in what was the inaugural Pablove Across America event. He visited children's hospitals along the way, attended fundraisers, performed as many interviews as he could schedule and talked to as many people about childhood cancer as would listen. It is now a year later and Jeff has embarked on Pablove Across America again, this time from Seattle to Los Angeles. Same plan as before.
If you recall last year, I met up with Jeff in San Diego and rode with him and other kindred spirits to Irvine. It was an experience I will not soon forget. I cannot come up with the words to adequately describe it--they are elusive and sometimes conflicting--but I was so honored and moved to be a part of it. So, I will be joining Jeff and his Pablove posse on the road again this Thursday, as he rides the final leg of this year's Pablove Across America from Ventura to Burbank, where the ride will end at Forest Lawn Cemetery at Pablo's grave. Again, I am really looking forward to participating in this experience and celebration of Pablo's life.
This is where I am calling on your help, however, as I would ask you to please consider making a donation to Pablove Across America (or simply the Pablove organization) to help Jeff and Jo Ann achieve their goals for Pablo. The websites are:
pablove.org
pablove.org/pablove-across-america
Please check them and out and see if you aren't inspired to give. No amount is too small--everything counts. Or, if you would rather advertise to spread the word on Pablove, there are great T-shirts and merchandise available to order, which also helps the cause.
I really appreciate you taking the time to read along and give this your consideration. I thank you deeply.
Paul
Last year, Jeff, an avid cyclist, rode his bike across the country--from Florida to California--in what was the inaugural Pablove Across America event. He visited children's hospitals along the way, attended fundraisers, performed as many interviews as he could schedule and talked to as many people about childhood cancer as would listen. It is now a year later and Jeff has embarked on Pablove Across America again, this time from Seattle to Los Angeles. Same plan as before.
If you recall last year, I met up with Jeff in San Diego and rode with him and other kindred spirits to Irvine. It was an experience I will not soon forget. I cannot come up with the words to adequately describe it--they are elusive and sometimes conflicting--but I was so honored and moved to be a part of it. So, I will be joining Jeff and his Pablove posse on the road again this Thursday, as he rides the final leg of this year's Pablove Across America from Ventura to Burbank, where the ride will end at Forest Lawn Cemetery at Pablo's grave. Again, I am really looking forward to participating in this experience and celebration of Pablo's life.
This is where I am calling on your help, however, as I would ask you to please consider making a donation to Pablove Across America (or simply the Pablove organization) to help Jeff and Jo Ann achieve their goals for Pablo. The websites are:
pablove.org
pablove.org/pablove-across-america
Please check them and out and see if you aren't inspired to give. No amount is too small--everything counts. Or, if you would rather advertise to spread the word on Pablove, there are great T-shirts and merchandise available to order, which also helps the cause.
I really appreciate you taking the time to read along and give this your consideration. I thank you deeply.
Paul
Tuesday, October 5, 2010
Second Counts
Our apologies, in our haste to report on Andrew's results last week, we failed to mention another success: Arms Wide Open Childhood Cancer Foundation held on for second place in the Pepsi Refresh Everything Contest, making it the (unofficial) recipient of a $250,000 grant, which will be used to fund promising, less-toxic therapies to treat Neuroblastoma. This is a very major victory for a very minor (statistically speaking) disease.
We cannot thank you enough for your enthusiastic and overwhelming response to support this cause. It is truly humbling to know we have such a group of family, friends, acquaintances and people we have not yet met to be able to call friends standing by and willing to help when asked. It is extremely satisfying to believe that it was your votes that made the difference in this contest.
We do not know the details of when and how the grant money will be awarded (we came into this late) to Arms Wide Open; we will certainly let you know the details of the contest as we learn them. What we do know is that we are so blessed and honored to have you in our corner. Thank you, again.
Love,
Paul & Cynthia
We cannot thank you enough for your enthusiastic and overwhelming response to support this cause. It is truly humbling to know we have such a group of family, friends, acquaintances and people we have not yet met to be able to call friends standing by and willing to help when asked. It is extremely satisfying to believe that it was your votes that made the difference in this contest.
We do not know the details of when and how the grant money will be awarded (we came into this late) to Arms Wide Open; we will certainly let you know the details of the contest as we learn them. What we do know is that we are so blessed and honored to have you in our corner. Thank you, again.
Love,
Paul & Cynthia
Thursday, September 30, 2010
The Spot Remains The Same
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
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
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
Wednesday, August 25, 2010
MiBG Report
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
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
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
Thursday, April 8, 2010
Still Clear!
Andrew completed his final scan--a second pass of the MiBG scan--this morning and followed that with a clinic visit to his oncologist. It was there that we got the good word: Still NED. OK, technically, the MiBG report was not back yet, but the CT report was, as was his blood work, and his oncologist had previewed the early MiBG scans and felt confident telling us they were all right; I do not think that he would go out on a limb like that if he had any doubt. So, we'll take it as official news, start breathing again, and throw ourselves into spring!
Thank you for your thoughts and prayers this week. We are truly grateful for your continued support.
Paul
Thank you for your thoughts and prayers this week. We are truly grateful for your continued support.
Paul
Sunday, April 4, 2010
April Scans Bring May Plans
Scan Week is upon us again: Tuesday, Andrew will go in for blood and urine tests, a CT scan and his MiBG injection; Wednesday will consist of the long MiBG scan; Thursday will be the shorter MiBG scan, followed by a clinic vist with our oncologist. We hope he will be ready and able to dispense good news at that time.
For what it's worth, Andrew has been doing well lately and has not had any symptoms, issues or complaints to speak of; but, his is an insidious disease and can be present before any significant signs appear. This week we seek confirmation that he is still clear. Please send Andrew your prayers and positive thoughts for continued NED status.
We will share with you that, if all goes well this week, we are planning a family vacation to Sicily for the end of May. There are many reasons for the trip, not the least of which will be to celebrate the fact that we have been given until July--the next rendezvous with Scan Week--to live. But also, in the wake of my dad's death last year, we are going to explore our heritage. This is a trip that my dad wanted to and might have made, but.... We are going to honor him. And--and I should point out that Cynthia's family is joining us--both Maritza and I will be celebrating our 40th birthdays while we are there. So, we're rolling it all up into The Mother of all vacations. We just have to escape this week unscathed....
Last, but by no means least, another milestone comes at the end of this week: Andrew is scheduled to see his pediatrician for his ROUTINE 5-year check-up. If you'll recall, Andrew's pediatrician is the one who found his tumor over 2 years ago and Andrew has not been in his care since. But, Friday marks the beginning of his transition back to "regular" care. Unfortunately, it won't be a happy reunion for Andrew, as he will start to get his immunizations all over again, since his transplant reset his immune system. Oh well...I guess progress isn't always painless.
As always, thanks for reading and for your support.
Paul
For what it's worth, Andrew has been doing well lately and has not had any symptoms, issues or complaints to speak of; but, his is an insidious disease and can be present before any significant signs appear. This week we seek confirmation that he is still clear. Please send Andrew your prayers and positive thoughts for continued NED status.
We will share with you that, if all goes well this week, we are planning a family vacation to Sicily for the end of May. There are many reasons for the trip, not the least of which will be to celebrate the fact that we have been given until July--the next rendezvous with Scan Week--to live. But also, in the wake of my dad's death last year, we are going to explore our heritage. This is a trip that my dad wanted to and might have made, but.... We are going to honor him. And--and I should point out that Cynthia's family is joining us--both Maritza and I will be celebrating our 40th birthdays while we are there. So, we're rolling it all up into The Mother of all vacations. We just have to escape this week unscathed....
Last, but by no means least, another milestone comes at the end of this week: Andrew is scheduled to see his pediatrician for his ROUTINE 5-year check-up. If you'll recall, Andrew's pediatrician is the one who found his tumor over 2 years ago and Andrew has not been in his care since. But, Friday marks the beginning of his transition back to "regular" care. Unfortunately, it won't be a happy reunion for Andrew, as he will start to get his immunizations all over again, since his transplant reset his immune system. Oh well...I guess progress isn't always painless.
As always, thanks for reading and for your support.
Paul
Thursday, February 25, 2010
Happy Birthday, Andrew!
Tomorrow is Andrew's birthday. He will be five. I suppose turning five is a pretty big deal for any child, but for Andrew especially, it is a major milestone, coming just over two years after his diagnosis. He is starting to get some traction in his life lately--drawing and coloring more, talking (non-stop), riding his balance bike--and we are overjoyed at the opportunity to celebrate with him.
The Neuroblastoma World has not been easy or kind lately. We have lost many beautiful and important members lately. Others are struggling and still others have relapsed unexpectedly and after many years of NED status. We don't know why it is, but waves like this come and do their damage and leave us reeling; we duck and hold our breath and pray that they pass without engulfing Andrew, too.
Any day with Andrew healthy is a good day and we are grateful for it. Being able to celebrate an event like tomorrow's reminds us just how blessed and fortunate we are. Happy Birthday, Andrew! We are in awe of your presence and your progress every day. Here's to turning five! And may you have many, many more birthdays....
Paul & Cynthia
The Neuroblastoma World has not been easy or kind lately. We have lost many beautiful and important members lately. Others are struggling and still others have relapsed unexpectedly and after many years of NED status. We don't know why it is, but waves like this come and do their damage and leave us reeling; we duck and hold our breath and pray that they pass without engulfing Andrew, too.
Any day with Andrew healthy is a good day and we are grateful for it. Being able to celebrate an event like tomorrow's reminds us just how blessed and fortunate we are. Happy Birthday, Andrew! We are in awe of your presence and your progress every day. Here's to turning five! And may you have many, many more birthdays....
Paul & Cynthia
Sunday, January 17, 2010
Anniversaries
Well, I guess I lied--so much for April. It is about to become January 18, 2010. For a lot of people, today is a holiday, part of a long weekend. It is MLK Day this year. For us--for me, in particular--today is an awkward anniversary: It is the second anniversary of Andrew's Neuroblastoma diagnosis and the first of my dad's death. In short, it is a watershed day, emotionally charged and quite raw.
Today makes for a strange juxtaposition and jumbling of feelings. Certainly, I feel incredible joy and relief at Andrew's completion of treatment and his current clean and clear status (touch wood on both). At the same time, I have deep anger and resentment and a total lack of understanding over the idea--no, the fact--that he, that ANY child, could be stricken with cancer in the first place. I don't know where to place that. How does that get reconciled? And, finally, I live in a near-constant state of fear of Andrew's relapse and my fear plumbs many depths, not the least of which is what he would have to endure in relapse and how poor his chances become, but also the doubts of whether I, Cynthia and Lucia--our family--could withstand another grueling episode of treatment. Do I, do we, have the strength and the stamina to suffer through this again? This goes right to the core of my abilities as a parent and a father. Clearly, if faced with it, the answer is, yes; but, I pray we never truly have to find out.
My thoughts surrounding my dad are tangled up in all of this, too. Above all, I still feel deep sadness over my dad's death. I miss him terribly. He was a great friend and I shared a lot with him and now that outlet and that connection is missing for me. It is an irreplaceable loss. Curiously, though, I also recognize that I feel a certain amount of relief over my dad's passing, in that he did not suffer with his disease for long. It would be difficult to see him bear the crude brutalities of cancer treatment. Of course, it would be dishonest for me not to also confess that I have considerable anger and resentment over my dad's death in general. He was taken cruelly and abruptly from this life--cheated--and the world lost a great and kind man. It makes no sense. Again, where do I place that? How am I to reconcile those feelings? And last, but by no means least, I worry about my mom and how she is dealing with her loss and I fear what she must be going through....
And so, today is a victory and a celebration. And it is a time for grieving and sadness. And it presents an opportunity to vent and to reflect. We will do our best to swirl those things together in the appropriate amounts and make the most of our day. I don't expect that there will be any answers forthcoming today, but I suppose this is more about the journey and the process than it is about some final destination.
Strange day, indeed. Take good care.
Paul
Today makes for a strange juxtaposition and jumbling of feelings. Certainly, I feel incredible joy and relief at Andrew's completion of treatment and his current clean and clear status (touch wood on both). At the same time, I have deep anger and resentment and a total lack of understanding over the idea--no, the fact--that he, that ANY child, could be stricken with cancer in the first place. I don't know where to place that. How does that get reconciled? And, finally, I live in a near-constant state of fear of Andrew's relapse and my fear plumbs many depths, not the least of which is what he would have to endure in relapse and how poor his chances become, but also the doubts of whether I, Cynthia and Lucia--our family--could withstand another grueling episode of treatment. Do I, do we, have the strength and the stamina to suffer through this again? This goes right to the core of my abilities as a parent and a father. Clearly, if faced with it, the answer is, yes; but, I pray we never truly have to find out.
My thoughts surrounding my dad are tangled up in all of this, too. Above all, I still feel deep sadness over my dad's death. I miss him terribly. He was a great friend and I shared a lot with him and now that outlet and that connection is missing for me. It is an irreplaceable loss. Curiously, though, I also recognize that I feel a certain amount of relief over my dad's passing, in that he did not suffer with his disease for long. It would be difficult to see him bear the crude brutalities of cancer treatment. Of course, it would be dishonest for me not to also confess that I have considerable anger and resentment over my dad's death in general. He was taken cruelly and abruptly from this life--cheated--and the world lost a great and kind man. It makes no sense. Again, where do I place that? How am I to reconcile those feelings? And last, but by no means least, I worry about my mom and how she is dealing with her loss and I fear what she must be going through....
And so, today is a victory and a celebration. And it is a time for grieving and sadness. And it presents an opportunity to vent and to reflect. We will do our best to swirl those things together in the appropriate amounts and make the most of our day. I don't expect that there will be any answers forthcoming today, but I suppose this is more about the journey and the process than it is about some final destination.
Strange day, indeed. Take good care.
Paul
Sunday, January 10, 2010
See You In April
Sorry for the delay in posting; we had a busy weekend dismantling Christmas. We met with Andrew's oncologist on Friday--the exceptional Dr. Anderson at City of Hope--and were given the official word: No Evidence of Disease. Nice work, everyone! On top of that, the word on the street is that Andrew's hemoglobin this round was a 9!!! We haven't seen levels like that (barring a transfusion) in years. This is all good progress.... We want to be careful not to get ahead of ourselves, but this is starting to feel like the foundation of a broader recovery. In fact, all of a sudden tonight, after bath time, even Andrew's hair started to look a little fuller. Hmmmm.... Gives you hope. See you in the spring.
Paul & Cynthia
Paul & Cynthia
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