First, let me say, Happy New Year! We have embraced 2010 officially. We said our farewells--to both the bad and the good--to 2009 the other night and here we are at the entrance of 2010, eager to walk through the door and see where it takes us.
As it turns out, our first order of business for 2010 will be Scan Week. This could not come at a better time. I say this for two reasons: First, we start off the year knowing almost immediately where we stand. Clean scans and we have three more months of anxiety-reduced living. Second, Andrew has been suffering of late from assorted ... issues--tiredness, diarrhea, leg pain--in short, many of the things that give us flashbacks to his initial diagnosis. Don't get me wrong, I am remaining relatively calm, in that much of this is probably attributable to the holidays and the fact that he has been too excited to sleep while also eating sweets and treats in large quantities. Still, Scan Week cannot come quickly enough ... I need my fears officially put to rest until April. This is how we live. This is the framework of our lives now. We know it's probably nothing, but the gnawing fear in the back of our minds never fully subsides.
To paraphrase the late, great Vin Diesel (What's that? He's not dead...?!): We live life a quarter at a time. Clean scans next week (touch wood) and we will then look forward to Andrew's birthday in February and perhaps a ski trip in March. That's about as far ahead as we can permit ourselves to look and plan. I'm sure that eventually, we will allow ourselves to stretch out a bit, but that is a year or so of clean living away. In the meantime, these are the mile markers that dictate our lives. Please send your thoughts and prayers for another three months of NED status. Thank you.
Paul
Thursday, December 31, 2009
Sunday, December 27, 2009
Season's Greetings
Dear All,
Wishing you a (belated) Merry Christmas and a (soon-to-be) Happy New Year! Some joy for you:
More to come in 2010.... Please have a safe rest of your holiday.
Paul, Cynthia, Lucia, Andrew & Cowboy
Wishing you a (belated) Merry Christmas and a (soon-to-be) Happy New Year! Some joy for you:
More to come in 2010.... Please have a safe rest of your holiday.
Paul, Cynthia, Lucia, Andrew & Cowboy
Tuesday, December 8, 2009
Give A Little Bit
Yes, it's true: You're supposed to think of Supertramp as you read that and perhaps hesitate to wonder where all the good prog rock went. Sigh....
OK, with that out of my system, on to the task at hand. First a quick update on life: We are all doing well coming off the back of an excellent Thanksgiving vacation. Mimi (my mom, for those of you not in on the Grandma speak) came out to visit for the week and seemed to enjoy herself and we spent Thanksgiving itself and a couple of bonus days up at Cassie's parent's ranch in Santa Ynez and could not have had a better time--Lucia and Andrew got to ride a horse, I got to ride my bike and Cynthia got a ride to the movie theater in town to see "New Moon." For the second time. If you were to take a poll, I think we would each say it was the perfect holiday....
And now, here we are in the second week of December and the cold and wet has finally descended upon Southern California and we have to (grudgingly) embrace the fact that winter is here. To be fair, it is nice to have a change up in the weather--how much sun and warmth can you take? (don't answer that)--and it's a decent trade, knowing that Christmas is only a few short weeks away. We managed to get our lights up on the house right after Thanksgiving and the tree decorated on Sunday. We are committed and ready. Bring it on, Santa!
Andrew-specific news is good, in that there is no news. We are in a lull with the exception of this "tiny" milestone: Andrew started his final round of oral chemo (Accutane) on Monday. This means that in a little less than two weeks--and, not-coincidentally, right before the Christmas holidays--he will have completed all Neuroblastoma-related treatment. And then some. In truth, we are throwing in the towel one cycle earlier than we had previously planned (standard treatment calls for 6 rounds of Accutane, we had originally thought to do 15, but we are capitulating at 14), but the fact is that each round gets progressively harder on Andrew in terms of side effects (his hands now blister and scab over) and Cynthia and I are hitting the wall of treatment fatigue. It will be almost two solid years of treatment for Andrew--he started January 18, 2008--and it is simply time to move on and start 2010 not only cancer-free, but treatment-free. Andrew has received every available treatment for "first-run" Neuroblastoma, so we have to put our faith in that now and hope that it continues to serve him. He will have scans again in January, immediately after the holidays, so please pray for continued NED status at that time.
In the meantime, it is the holidays and the year end and so, it is my cue for my annual plea (rant?) in support of those organizations near and dear to us. This year is a bit different in that there have been some shifts in the Neuroblastoma community in the last year, but the intentions and effects of your giving are the same. Donating to these organizations is important and necessary, as they are the best avenues through which to make an impact on this disease and on a child's life. Pediatric cancer--in its totality--is largely orphaned by our government and the drug companies; Neuroblastoma is like an orphan of an orphan.
To make a small point: A couple of years ago--under the previous administration and with much fanfare (at least in the pediatric cancer community)--the Carolyn Price Walker Conquer Childhood Cancer Act was signed into law. It called for...wait for it...$30,000,000 to fund pediatric cancer research. Let that sink in for a moment. That's $30,000,000 for ALL pediatric cancer research. In the country. And do you know what $30,000,000 is relative to the government's annual budget? It's like a rounding error. But--and this is the kicker--the $30,000,000 has yet to actually be funded in the budget! Even under the new administration. So, there is a law calling for $30,000,000 to be funded--no, rather "earmarked"--for children's cancer research, but arms still have to be twisted to force the dollars to be printed. Cancer is BY FAR the leading cause of death in children, yet this is its priority. Pathetic.
This is why we must act on our own. This is why these organizations are so critical to our cause. They will gather the funds and do their homework and fund the research grants that have the best chance of making a difference, grant the wish of the sick child, implement the art and music program for hospitalized kids and support the growing number (touch wood) of survivors of this disease as they move from treatment into the unknown of long-term side effects from treatment. In short, any and all support is worthwhile, as it will go directly to making an impact on this disease in one form or another.
Without further ado, please consider how you can help this year or in the future:
http://lunchforacure.org/
As with last year, this is where we are asking you to focus your support. This is the new Lunch for Life site and it strikes us as the most effective, yet perhaps effortless, way to give: as little as $5 at a time. We recognize that this has been a very difficult year for a lot of people and families, so anything that you can muster is appreciated and valued. The true beauty of Lunch for a Cure lies in this:
100% of the dollars received will go to fund neuroblastoma research! NO administrative costs, NO marketing costs, and NO foundation salaries - just research.
Perhaps most importantly, Lunch for a Cure is the site of the Giving Trees, which we had tremendous support for last year. Andrew's tree is certainly in need of ornaments, if you would like to participate in filling it!
If you are interested in doing more and would like suggestions of other worthwhile organizations, we are happy to make the following recommendations:
http://www.neuroblastomafoundation.org/Default.aspx
This organization is focused primarily on funding research for novel and promising treatments for NB. This is not entirely altruistic. Most research, as a matter of design, is targeted at relapsed or refractory disease; if Andrew (God forbid) sees Neuroblastoma again, this will be his lot. We need breakthroughs here.
http://wish.org/
This is the Make-A-Wish Foundation, a truly worthwhile organization, whether you support them monetarily or perhaps volunteer in your local chapter.
http://www.pablove.org/
I recently posted about the Pablove Foundation and Jeff and Joann's personal commitment to improving the lives of children with cancer through music and art programs in hospitals.
http://friendsofchla.org/Friends_of_Childrens_Hospital/Welcome.html
Friend's of Children's Hospital works to support the survivors of this disease as they confront and work through the long-term consequences of their treatment.
Again, we feel that Lunch for a Cure is an ideal charity on many levels and ask you to support it, if you are able. And, at this time of year in particular, you can have a good time doing it through the Giving Trees. If you are in a position to do more, perhaps with one of these other organizations, that is simply tremendous. We are grateful for all that you do.
May your holidays be exactly what you hope for. Here's to a healthy and happy 2010! Take care.
Paul Filippone
OK, with that out of my system, on to the task at hand. First a quick update on life: We are all doing well coming off the back of an excellent Thanksgiving vacation. Mimi (my mom, for those of you not in on the Grandma speak) came out to visit for the week and seemed to enjoy herself and we spent Thanksgiving itself and a couple of bonus days up at Cassie's parent's ranch in Santa Ynez and could not have had a better time--Lucia and Andrew got to ride a horse, I got to ride my bike and Cynthia got a ride to the movie theater in town to see "New Moon." For the second time. If you were to take a poll, I think we would each say it was the perfect holiday....
And now, here we are in the second week of December and the cold and wet has finally descended upon Southern California and we have to (grudgingly) embrace the fact that winter is here. To be fair, it is nice to have a change up in the weather--how much sun and warmth can you take? (don't answer that)--and it's a decent trade, knowing that Christmas is only a few short weeks away. We managed to get our lights up on the house right after Thanksgiving and the tree decorated on Sunday. We are committed and ready. Bring it on, Santa!
Andrew-specific news is good, in that there is no news. We are in a lull with the exception of this "tiny" milestone: Andrew started his final round of oral chemo (Accutane) on Monday. This means that in a little less than two weeks--and, not-coincidentally, right before the Christmas holidays--he will have completed all Neuroblastoma-related treatment. And then some. In truth, we are throwing in the towel one cycle earlier than we had previously planned (standard treatment calls for 6 rounds of Accutane, we had originally thought to do 15, but we are capitulating at 14), but the fact is that each round gets progressively harder on Andrew in terms of side effects (his hands now blister and scab over) and Cynthia and I are hitting the wall of treatment fatigue. It will be almost two solid years of treatment for Andrew--he started January 18, 2008--and it is simply time to move on and start 2010 not only cancer-free, but treatment-free. Andrew has received every available treatment for "first-run" Neuroblastoma, so we have to put our faith in that now and hope that it continues to serve him. He will have scans again in January, immediately after the holidays, so please pray for continued NED status at that time.
In the meantime, it is the holidays and the year end and so, it is my cue for my annual plea (rant?) in support of those organizations near and dear to us. This year is a bit different in that there have been some shifts in the Neuroblastoma community in the last year, but the intentions and effects of your giving are the same. Donating to these organizations is important and necessary, as they are the best avenues through which to make an impact on this disease and on a child's life. Pediatric cancer--in its totality--is largely orphaned by our government and the drug companies; Neuroblastoma is like an orphan of an orphan.
To make a small point: A couple of years ago--under the previous administration and with much fanfare (at least in the pediatric cancer community)--the Carolyn Price Walker Conquer Childhood Cancer Act was signed into law. It called for...wait for it...$30,000,000 to fund pediatric cancer research. Let that sink in for a moment. That's $30,000,000 for ALL pediatric cancer research. In the country. And do you know what $30,000,000 is relative to the government's annual budget? It's like a rounding error. But--and this is the kicker--the $30,000,000 has yet to actually be funded in the budget! Even under the new administration. So, there is a law calling for $30,000,000 to be funded--no, rather "earmarked"--for children's cancer research, but arms still have to be twisted to force the dollars to be printed. Cancer is BY FAR the leading cause of death in children, yet this is its priority. Pathetic.
This is why we must act on our own. This is why these organizations are so critical to our cause. They will gather the funds and do their homework and fund the research grants that have the best chance of making a difference, grant the wish of the sick child, implement the art and music program for hospitalized kids and support the growing number (touch wood) of survivors of this disease as they move from treatment into the unknown of long-term side effects from treatment. In short, any and all support is worthwhile, as it will go directly to making an impact on this disease in one form or another.
Without further ado, please consider how you can help this year or in the future:
http://lunchforacure.org/
As with last year, this is where we are asking you to focus your support. This is the new Lunch for Life site and it strikes us as the most effective, yet perhaps effortless, way to give: as little as $5 at a time. We recognize that this has been a very difficult year for a lot of people and families, so anything that you can muster is appreciated and valued. The true beauty of Lunch for a Cure lies in this:
100% of the dollars received will go to fund neuroblastoma research! NO administrative costs, NO marketing costs, and NO foundation salaries - just research.
Perhaps most importantly, Lunch for a Cure is the site of the Giving Trees, which we had tremendous support for last year. Andrew's tree is certainly in need of ornaments, if you would like to participate in filling it!
If you are interested in doing more and would like suggestions of other worthwhile organizations, we are happy to make the following recommendations:
http://www.neuroblastomafoundation.org/Default.aspx
This organization is focused primarily on funding research for novel and promising treatments for NB. This is not entirely altruistic. Most research, as a matter of design, is targeted at relapsed or refractory disease; if Andrew (God forbid) sees Neuroblastoma again, this will be his lot. We need breakthroughs here.
http://wish.org/
This is the Make-A-Wish Foundation, a truly worthwhile organization, whether you support them monetarily or perhaps volunteer in your local chapter.
http://www.pablove.org/
I recently posted about the Pablove Foundation and Jeff and Joann's personal commitment to improving the lives of children with cancer through music and art programs in hospitals.
http://friendsofchla.org/Friends_of_Childrens_Hospital/Welcome.html
Friend's of Children's Hospital works to support the survivors of this disease as they confront and work through the long-term consequences of their treatment.
Again, we feel that Lunch for a Cure is an ideal charity on many levels and ask you to support it, if you are able. And, at this time of year in particular, you can have a good time doing it through the Giving Trees. If you are in a position to do more, perhaps with one of these other organizations, that is simply tremendous. We are grateful for all that you do.
May your holidays be exactly what you hope for. Here's to a healthy and happy 2010! Take care.
Paul Filippone
Monday, November 9, 2009
Port Free
Andrew's surgery this morning was successful and uneventful. He woke up from the anesthesia a bit cranky and belligerent, so he was not too pleasant to be around. Then he vomited and that seemed to settle him down. He is resting quietly at home and trying to forget about the soreness in his shoulder.
Thank you for your prayers and support. It's been another good day.
Paul
Thank you for your prayers and support. It's been another good day.
Paul
Sunday, November 8, 2009
Out, damned port! Out, I say!
Andrew is scheduled for surgery in the morning to have his port removed. We--well, technically, one of us--will be waking up at 5:00AM to take him into City of Hope, where he will be prepped for a 7:30AM procedure. As we understand it, the surgery to remove the port is simple and straightforward--surgery lite, if you will--so we are not terribly concerned about the procedure itself. (It's amazing how skewed our perspective is by now: Andrew will be going under general anesthesia, then wheeled into the OR, where they will cut into his shoulder and pull out a line that's in a vein leading to his heart, but we're completely unfazed. Yikes!)
The fact is that, while it may be a minor procedure relative to what he's been through, its significance is major. This is a truly momentous event, as it marks the end of that phase--the active phase--of his treatment. Removing the port allows Andrew to jettison one more artifact from life as a cancer patient and move one more step toward normalcy. Or "normalcy," which we'll take. We have been in the slow unwind from cancer treatment, but suddenly, here we are about to erase an important piece of evidence from that life. This is progress. This is moving forward. This feels good.
Of course, nothing in our life is that simple either. There is always a degree of fear and worry that goes into these decisions and these times. At the top of the list is the concern that we go through this and take out the port and Andrew relapses and needs it again. Clearly, though, we can't go through life thinking like that. There is also the fact that the port serves a good purpose: It allows fluids in and out without much pain or drama. Obviously, with treatment ending, there are no fluids (chemo, transfusions, antibiotics, etc.) that need to go in; but, there are still routine blood draws, which Andrew will now have to tolerate the old-fashioned way: A needle poke in his arm. We have had to do this a couple of times in the last year or so and, trust me, it is not pretty or fun. So, we will have to adjust to that.... And last, but not least, there is also this odd issue: When we told Andrew he would be having surgery to take his port out, he got somewhat sad and defensive and said, "But it keeps me alive." That gave us pause. I think we're still formulating our official response to that, but we're pressing ahead in the meantime. At the end of the day, it is an overwhelming positive that we are even in the position to be on the eve of this operation. In that, we are truly blessed.
For what it's worth, I should also go on record here and say that there is no love lost with this port either. Don't get me wrong, I'm glad Andrew has had it, as it allowed him much better quality of life--offering him the ability to swim AND BATHE--than his original "external" line. But it has been glitch-y, to say the least: Not too long after it was installed, it started to malfunction and have some issues with clogging and getting blocked. In fact, it has been seized up on one side (there are two, thankfully) for months now. We gave up on it a while ago. So, good riddance, I say.
Please send good thoughts and prayers to Andrew tomorrow morning. It may be minor, but surgery is still surgery.... We will be sure to post with an update to let you know how it goes.
Paul
The fact is that, while it may be a minor procedure relative to what he's been through, its significance is major. This is a truly momentous event, as it marks the end of that phase--the active phase--of his treatment. Removing the port allows Andrew to jettison one more artifact from life as a cancer patient and move one more step toward normalcy. Or "normalcy," which we'll take. We have been in the slow unwind from cancer treatment, but suddenly, here we are about to erase an important piece of evidence from that life. This is progress. This is moving forward. This feels good.
Of course, nothing in our life is that simple either. There is always a degree of fear and worry that goes into these decisions and these times. At the top of the list is the concern that we go through this and take out the port and Andrew relapses and needs it again. Clearly, though, we can't go through life thinking like that. There is also the fact that the port serves a good purpose: It allows fluids in and out without much pain or drama. Obviously, with treatment ending, there are no fluids (chemo, transfusions, antibiotics, etc.) that need to go in; but, there are still routine blood draws, which Andrew will now have to tolerate the old-fashioned way: A needle poke in his arm. We have had to do this a couple of times in the last year or so and, trust me, it is not pretty or fun. So, we will have to adjust to that.... And last, but not least, there is also this odd issue: When we told Andrew he would be having surgery to take his port out, he got somewhat sad and defensive and said, "But it keeps me alive." That gave us pause. I think we're still formulating our official response to that, but we're pressing ahead in the meantime. At the end of the day, it is an overwhelming positive that we are even in the position to be on the eve of this operation. In that, we are truly blessed.
For what it's worth, I should also go on record here and say that there is no love lost with this port either. Don't get me wrong, I'm glad Andrew has had it, as it allowed him much better quality of life--offering him the ability to swim AND BATHE--than his original "external" line. But it has been glitch-y, to say the least: Not too long after it was installed, it started to malfunction and have some issues with clogging and getting blocked. In fact, it has been seized up on one side (there are two, thankfully) for months now. We gave up on it a while ago. So, good riddance, I say.
Please send good thoughts and prayers to Andrew tomorrow morning. It may be minor, but surgery is still surgery.... We will be sure to post with an update to let you know how it goes.
Paul
Monday, November 2, 2009
Pablove Across America
I have been meaning to make this post for a few weeks now--before this event rolled out--but I have not been organized enough lately. Now that it is officially through the half-way mark, I figure it is about time I pull myself together and get this story out there--it is truly worth sharing. But first, some background:
Pablo Castelaz was diagnosed with Wilms’ Tumor in May, 2008. He was treated at CHLA and shortly after his diagnosis, his parents--upon seeing the needs of kids with cancer at CHLA--created the Pablove Foundation to support the kids there (not solely Wilms’ sufferers). From what I understand, Wilms’ Tumor typically is treated quite successfully. I believe the statistics on it are far better than Neuroblastoma. Pablo’s case was not typical, however. After completing standard treatment and showing a complete response, Pablo immediately relapsed. He died only weeks later, just after his birthday. He was six. This was June of this year.
Pablo’s dad, Jeff, is an avid cyclist. In fact, as he mentions, he never would have thought of forming a foundation to help pediatric cancer, if he had not heard of The Livestrong Foundation, which he was familiar with due to cycling. And, in the course of Pablo’s treatment, he was able to meet, get to know, and collaborate with Lance Armstrong. For anyone who watches the Tour de France, you might have seen a series of ads by Nike and Livestrong during this summer’s race. They featured various cancer survivors telling their stories. Jeff and Pablo were to be featured in one that had been shot at the conclusion of Pablo’s treatment, when it was thought that he was cancer-free. I don’t believe their ad ever aired, due to Pablo’s death, but I would encourage you to watch (link is below), as Jeff’s comments about being a parent of a child with cancer certainly hit home.
What is prompting this post is that Jeff decided to channel his grieving for Pablo and his energy for the Pablove Foundation into an event: He is riding his bike across the country, from St. Augustine, FL to Los Angeles, CA (specifically ending at Pablo’s grave site at Forest Lawn on November 21). He will ride 3100 miles over 40 days and he is trying to raise money and awareness for childhood cancers. Along the way, he will be stopping at children's hospitals and holding various fundraisers. For example, there was an event in Austin with Lance Armstrong. What started as a foundation focused on Children’s Hospital Los Angeles is now something that he is trying to make into a national organization aimed at helping all pediatric cancer patients. As is stated in the Pablove Foundation’s mission:
Kids get cancer too. They need your help. It’s not somebody else's problem.
Of course, we know this all too well. If you are interested, I encourage you to check out the foundation’s site and get more information. If you are moved to make a donation or buy some merchandise, thank you. If you want to join Jeff along his route, please feel free. If you are at one the hospitals he visits, please say hello. He also writes a pretty insightful blog, if you have the time to immerse yourself in that. Here are the various links:
http://www.youtube.com/watch?v=Uu5htGLBXAg (Pablove/Livestrong commercial)
http://www.pablove.org/mission/
http://getwellpablo.blogspot.com/
On a personal note, it is striking to me what Jeff and I have in common: cycling, music (he manages bands and runs a record label), sons diagnosed with cancer.... Of course, there is a great, gaping difference: He has lost his son in this fight. That, I cannot pretend to fathom. Much less where he gets the strength to put together an event like this.... It is humbling and inspirational. I encourage you to lend him your support.
Thanks for listening. Take care.
Paul Filippone
Pablo Castelaz was diagnosed with Wilms’ Tumor in May, 2008. He was treated at CHLA and shortly after his diagnosis, his parents--upon seeing the needs of kids with cancer at CHLA--created the Pablove Foundation to support the kids there (not solely Wilms’ sufferers). From what I understand, Wilms’ Tumor typically is treated quite successfully. I believe the statistics on it are far better than Neuroblastoma. Pablo’s case was not typical, however. After completing standard treatment and showing a complete response, Pablo immediately relapsed. He died only weeks later, just after his birthday. He was six. This was June of this year.
Pablo’s dad, Jeff, is an avid cyclist. In fact, as he mentions, he never would have thought of forming a foundation to help pediatric cancer, if he had not heard of The Livestrong Foundation, which he was familiar with due to cycling. And, in the course of Pablo’s treatment, he was able to meet, get to know, and collaborate with Lance Armstrong. For anyone who watches the Tour de France, you might have seen a series of ads by Nike and Livestrong during this summer’s race. They featured various cancer survivors telling their stories. Jeff and Pablo were to be featured in one that had been shot at the conclusion of Pablo’s treatment, when it was thought that he was cancer-free. I don’t believe their ad ever aired, due to Pablo’s death, but I would encourage you to watch (link is below), as Jeff’s comments about being a parent of a child with cancer certainly hit home.
What is prompting this post is that Jeff decided to channel his grieving for Pablo and his energy for the Pablove Foundation into an event: He is riding his bike across the country, from St. Augustine, FL to Los Angeles, CA (specifically ending at Pablo’s grave site at Forest Lawn on November 21). He will ride 3100 miles over 40 days and he is trying to raise money and awareness for childhood cancers. Along the way, he will be stopping at children's hospitals and holding various fundraisers. For example, there was an event in Austin with Lance Armstrong. What started as a foundation focused on Children’s Hospital Los Angeles is now something that he is trying to make into a national organization aimed at helping all pediatric cancer patients. As is stated in the Pablove Foundation’s mission:
Kids get cancer too. They need your help. It’s not somebody else's problem.
Of course, we know this all too well. If you are interested, I encourage you to check out the foundation’s site and get more information. If you are moved to make a donation or buy some merchandise, thank you. If you want to join Jeff along his route, please feel free. If you are at one the hospitals he visits, please say hello. He also writes a pretty insightful blog, if you have the time to immerse yourself in that. Here are the various links:
http://www.youtube.com/watch?v=Uu5htGLBXAg (Pablove/Livestrong commercial)
http://www.pablove.org/mission/
http://getwellpablo.blogspot.com/
On a personal note, it is striking to me what Jeff and I have in common: cycling, music (he manages bands and runs a record label), sons diagnosed with cancer.... Of course, there is a great, gaping difference: He has lost his son in this fight. That, I cannot pretend to fathom. Much less where he gets the strength to put together an event like this.... It is humbling and inspirational. I encourage you to lend him your support.
Thanks for listening. Take care.
Paul Filippone
Sunday, November 1, 2009
Sunday, October 18, 2009
Get your motor runnin'...
I have been meaning to post a recap of Andrew's Make-A-Wish trip, but it is hard to separate the details of the trip itself from the overall Make-A-Wish experience. I cannot say enough about this organization and how humbled we are to have had Andrew's wish granted by them. Therefore, I am simply going to post a copy of the letter that we sent to our Make-A-Wish coordinator and the Make-A-Wish organization upon our return:
Maria (and Make-A-Wish),
We just got back from Andrew’s Make-A-Wish trip and I needed to write to let you know what an incredible job you and the organization did and how perfectly Andrew’s wish played out. From the beginning, when Andrew’s Wish Granters came to our home to get to know him, understand his interests and, ultimately, learn his wish, we knew that there was an attention to detail and a desire to make this something truly special and unique for him; but nothing can quite prepare you for how moving and impressive it is when you experience it firsthand. All expectations were exceeded.
It is important that I go through this item by item, because everything and everyone was “above and beyond” and worthy of mention. Andrew’s wish began with a ride to the airport, but this was not just any ride, it was a ride in a white stretch limousine with a driver (who was extremely courteous and kind). Andrew and his sister, Lucia, were ecstatic over the “long car with the lights in the ceiling.” Frankly, our trip could have started and ended there and they would have been thrilled, but we were just getting started…. Our American Airlines flight to Miami was smooth and enjoyable and it was a surprise bonus to be greeted in Miami by a Make-A-Wish volunteer, who was there simply to offer us a friendly face and point us in the right direction as we picked up our baggage and headed for our rental car. At Avis to pick up our rental car and, again, at the Courtyard Marriott, it was heartening and humbling to notice how the respective representatives became more hospitable and engaged as they recognized that Andrew was on a Wish Trip. Put simply: Make-A-Wish brings out the best in people.
Certainly, that is what I witnessed the next day at Andrew’s wish, which was to meet his favorite racecar driver, Tony Kanaan, and see an IndyCar race. We were met at Homestead-Miami Speedway by yet another Make-A-Wish volunteer, Lissette, who was the definition of “trooper” and stuck with us throughout a very long, hot day of car racing. Lissette saw to it that we received our credentials, made it into the racetrack, interfaced with the track media representatives and kept us company. Homestead-Miami did its part, too, in the form of Ryan and Natalie, the media representatives there, who did more than take care of us—they went well out of their way to make sure that Andrew’s experience was perfect and complete. Last, but by no means least, I cannot say enough about Tony Kanaan himself, who was accessible and charming and spent more time than he had to give answering Andrew’s questions, signing autographs and posing for pictures. He topped off the visit with an invitation to Andrew to join him on the podium, should he win the race. Ultimately, he did not win (though he ran an exceptional race), but he saw to it that Andrew made it into the Winner’s Circle regardless. He was a true gentleman and, though I personally do not know much about IndyCar racing or follow it, I can say with certainty that he has fans for life in me and my family and we wish him only success.
Sunday was also a perfect day for us, but in a different way: Obviously, Make-A-Wish’s purpose is to address those kids with life-threatening illnesses. But, there are non-ill siblings, whose lives are impacted nonetheless by their sick brother or sister. Certainly, that has been the case in our house, where we have been struggling with the “collateral damage” of Andrew’s illness and subsequent treatment, as it has been inflicted upon Andrew’s sister, Lucia. With our day off on Sunday, we were able to grant Lucia’s “wish” by allowing her to plan her ideal day in Miami. For her, it was simple: A day at the beach as a family—no more, no less. So, we spent our entire Sunday at the beach, playing in the water, building sand castles and collecting shells. Oh, and getting REALLY sunburned. But, that’s a small price to pay for that kind of quality time.
Our return to Los Angeles on American Airlines was equally as smooth and uneventful as our departure and was followed by our pick-up and ride home in our head-turning limousine. In short, it was the perfect trip and I cannot think of one thing that we would have changed or that could have been better. We—I think collectively and individually—are so grateful to you and the Make-A-Wish organization for such a profoundly beautiful gift and experience. You do exceptional work and we will sing your praises for quite some time to come. Thank you, again.
Sincerely,
Paul Filippone
Dad to Andrew Filippone, Wish Recipient
And here are a few parting photos:
Maria (and Make-A-Wish),
We just got back from Andrew’s Make-A-Wish trip and I needed to write to let you know what an incredible job you and the organization did and how perfectly Andrew’s wish played out. From the beginning, when Andrew’s Wish Granters came to our home to get to know him, understand his interests and, ultimately, learn his wish, we knew that there was an attention to detail and a desire to make this something truly special and unique for him; but nothing can quite prepare you for how moving and impressive it is when you experience it firsthand. All expectations were exceeded.
It is important that I go through this item by item, because everything and everyone was “above and beyond” and worthy of mention. Andrew’s wish began with a ride to the airport, but this was not just any ride, it was a ride in a white stretch limousine with a driver (who was extremely courteous and kind). Andrew and his sister, Lucia, were ecstatic over the “long car with the lights in the ceiling.” Frankly, our trip could have started and ended there and they would have been thrilled, but we were just getting started…. Our American Airlines flight to Miami was smooth and enjoyable and it was a surprise bonus to be greeted in Miami by a Make-A-Wish volunteer, who was there simply to offer us a friendly face and point us in the right direction as we picked up our baggage and headed for our rental car. At Avis to pick up our rental car and, again, at the Courtyard Marriott, it was heartening and humbling to notice how the respective representatives became more hospitable and engaged as they recognized that Andrew was on a Wish Trip. Put simply: Make-A-Wish brings out the best in people.
Certainly, that is what I witnessed the next day at Andrew’s wish, which was to meet his favorite racecar driver, Tony Kanaan, and see an IndyCar race. We were met at Homestead-Miami Speedway by yet another Make-A-Wish volunteer, Lissette, who was the definition of “trooper” and stuck with us throughout a very long, hot day of car racing. Lissette saw to it that we received our credentials, made it into the racetrack, interfaced with the track media representatives and kept us company. Homestead-Miami did its part, too, in the form of Ryan and Natalie, the media representatives there, who did more than take care of us—they went well out of their way to make sure that Andrew’s experience was perfect and complete. Last, but by no means least, I cannot say enough about Tony Kanaan himself, who was accessible and charming and spent more time than he had to give answering Andrew’s questions, signing autographs and posing for pictures. He topped off the visit with an invitation to Andrew to join him on the podium, should he win the race. Ultimately, he did not win (though he ran an exceptional race), but he saw to it that Andrew made it into the Winner’s Circle regardless. He was a true gentleman and, though I personally do not know much about IndyCar racing or follow it, I can say with certainty that he has fans for life in me and my family and we wish him only success.
Sunday was also a perfect day for us, but in a different way: Obviously, Make-A-Wish’s purpose is to address those kids with life-threatening illnesses. But, there are non-ill siblings, whose lives are impacted nonetheless by their sick brother or sister. Certainly, that has been the case in our house, where we have been struggling with the “collateral damage” of Andrew’s illness and subsequent treatment, as it has been inflicted upon Andrew’s sister, Lucia. With our day off on Sunday, we were able to grant Lucia’s “wish” by allowing her to plan her ideal day in Miami. For her, it was simple: A day at the beach as a family—no more, no less. So, we spent our entire Sunday at the beach, playing in the water, building sand castles and collecting shells. Oh, and getting REALLY sunburned. But, that’s a small price to pay for that kind of quality time.
Our return to Los Angeles on American Airlines was equally as smooth and uneventful as our departure and was followed by our pick-up and ride home in our head-turning limousine. In short, it was the perfect trip and I cannot think of one thing that we would have changed or that could have been better. We—I think collectively and individually—are so grateful to you and the Make-A-Wish organization for such a profoundly beautiful gift and experience. You do exceptional work and we will sing your praises for quite some time to come. Thank you, again.
Sincerely,
Paul Filippone
Dad to Andrew Filippone, Wish Recipient
And here are a few parting photos:
Wednesday, October 7, 2009
Fish, fish, got his wish!
Andrew will receive his Make-A-Wish this weekend, as we travel to Miami to see the final IndyCar race of the season. Apparently, this is the championship race and the points competition is ridiculously close, so everyone's season comes down to this. Pretty exciting.... AND, he also gets to meet his favorite driver (of the 7-Eleven car), Tony Kanaan. Truth be told, I can't remember if Andrew's exact wish was to go to an IndyCar race or to meet his favorite driver, Tony Kanaan, but the two seem to go hand-in-hand, so he picked up a twofer.
I want to take a moment to heap some praise on Make-A-Wish and acknowledge what an incredible organization it is and how dedicated the volunteers there are. It and they have been amazing. From seeking us out, to coming to meet Andrew, getting to know him and learning his interests, and then organizing and personalizing and, ultimately, granting his wish--it could not have been done better. It's a humbling thing to experience: The time and energy and attention to detail that went into making sure that Andrew's wish is just right.... I encourage you to support the Make-A-Wish organization and/or your local chapter. They are out there really making a difference in a lot of kids' lives and they deserve our support.
As we gear up for our big Make-A-Wish weekend, I should also mention that we are only just now starting to breathe this week, as it has been scan week, which is always stressful and full of anxiety. Or as I saw somewhere else today: Scanxiety. So far, though, we only have good news to report: Clear CT scan, clear bone marrow, and half of a clear MiBG scan. We have to return tomorrow for the additional MiBG scan, so we're not totally signed off just yet, but we're feeling reasonably good. Oh, and by the way, Andrew's hemoglobin this week was 8.6, which is still ridiculously low overall, but the highest he has been in months (maybe years?), so we were pretty thrilled with that.
In fact, treatment begins to space out a bit now--clinic visits once a month and scans every 3 months--so we had the final discussion with our doc to have Andrew's port removed. His surgery will be scheduled for next week or the following. This is good news and it is progress. The port is the last evidence of his active treatment, so we are eager to get rid of it. The timing is important, too, as flu season is upon us and, if Andrew were to keep the port and develop a fever, then we would have to be admitted into the hospital for antibiotics to ensure he didn't have an infection via the port. Taking the port out means that, if he develops a fever, well, it's just a fever. Of course, the downside to all of this is that, from now on, for blood draws and scan weeks, etc., whenever they need blood out or contrast or whatever in, they have to poke him. No more easy access. I suppose that's the price of progress....
Paul
I want to take a moment to heap some praise on Make-A-Wish and acknowledge what an incredible organization it is and how dedicated the volunteers there are. It and they have been amazing. From seeking us out, to coming to meet Andrew, getting to know him and learning his interests, and then organizing and personalizing and, ultimately, granting his wish--it could not have been done better. It's a humbling thing to experience: The time and energy and attention to detail that went into making sure that Andrew's wish is just right.... I encourage you to support the Make-A-Wish organization and/or your local chapter. They are out there really making a difference in a lot of kids' lives and they deserve our support.
As we gear up for our big Make-A-Wish weekend, I should also mention that we are only just now starting to breathe this week, as it has been scan week, which is always stressful and full of anxiety. Or as I saw somewhere else today: Scanxiety. So far, though, we only have good news to report: Clear CT scan, clear bone marrow, and half of a clear MiBG scan. We have to return tomorrow for the additional MiBG scan, so we're not totally signed off just yet, but we're feeling reasonably good. Oh, and by the way, Andrew's hemoglobin this week was 8.6, which is still ridiculously low overall, but the highest he has been in months (maybe years?), so we were pretty thrilled with that.
In fact, treatment begins to space out a bit now--clinic visits once a month and scans every 3 months--so we had the final discussion with our doc to have Andrew's port removed. His surgery will be scheduled for next week or the following. This is good news and it is progress. The port is the last evidence of his active treatment, so we are eager to get rid of it. The timing is important, too, as flu season is upon us and, if Andrew were to keep the port and develop a fever, then we would have to be admitted into the hospital for antibiotics to ensure he didn't have an infection via the port. Taking the port out means that, if he develops a fever, well, it's just a fever. Of course, the downside to all of this is that, from now on, for blood draws and scan weeks, etc., whenever they need blood out or contrast or whatever in, they have to poke him. No more easy access. I suppose that's the price of progress....
Paul
Sunday, September 13, 2009
Alice Cooper In Reverse
Summer's out. School's In. In our never-ending Fall schedule, last week was back-to-school for Lucia and Andrew. Cynthia and I are reeling from the added intensity that goes with our morning routine now, as we arm wrestle the kids to eat breakfast, get dressed, brush their teeth and get out the door in order not to be late for class. We're out of practice; summer is not just a break for kids....
Lucia is entering 1st grade at a new school. It's all very serious and she wants nothing to do with us at drop-off. Apparently, we're a drag on her image or something. Andrew is taking on Pre-K at St. James, where he was last year. This year, we're hoping that he has a much more consistent attendance record compared to last year, so that he has an opportunity to make up some lost ground on the other kids. Fortunately for us, both were willing to pose for back-to-school photos:
Obviously--the morning routine issues aside--this is an exciting and joyful time for us; but it is also bittersweet, as we reflect on the many kids who lost their battle with this disease during the summer and are not here for their back-to-school. In particular, we think about their moms and dads, as they must certainly be suffering at this time of year. We offer our prayers and support to them and can only hope that their days get easier and less painful.
Paul & Cynthia
Lucia is entering 1st grade at a new school. It's all very serious and she wants nothing to do with us at drop-off. Apparently, we're a drag on her image or something. Andrew is taking on Pre-K at St. James, where he was last year. This year, we're hoping that he has a much more consistent attendance record compared to last year, so that he has an opportunity to make up some lost ground on the other kids. Fortunately for us, both were willing to pose for back-to-school photos:
Obviously--the morning routine issues aside--this is an exciting and joyful time for us; but it is also bittersweet, as we reflect on the many kids who lost their battle with this disease during the summer and are not here for their back-to-school. In particular, we think about their moms and dads, as they must certainly be suffering at this time of year. We offer our prayers and support to them and can only hope that their days get easier and less painful.
Paul & Cynthia
Saturday, September 12, 2009
Do You Hear What I Hear?
That was the question last week as we took Andrew to Children's Hospital Los Angeles for an appointment with the audiologist there. Our concern--as we have expressed here before--is that one of the more severe side effects of cancer treatment in children is the potential for hearing loss as a result of the chemotherapy, strong antibiotics and diuretics that are administered throughout this fight. The impact of hearing loss on kids at this age (Andrew was just shy of his 3rd birthday at diagnosis) is that it couldn't come at a worse time developmentally: Imagine trying to decipher sounds, form words, learn to read or participate in school when your ears suddenly don't work like they should.... For us, our fear over this issue was so acute, it drove us to seek out an alternative transplant regimen for Andrew, one that used slightly different chemotherapeutic agents, which were not supposed to be as harsh on his hearing as the standard ones. The thing is, we didn't know if it actually worked and we didn't know how much his hearing had already been impacted from the other chemotherapy (notably Cisplatin) and drugs that he had received as part of his induction phase. And so it was that we went on Wednesday in search of the answer.
The good news--no, the GREAT news--is that Andrew hears well. Really well. Not perfectly well, but really well, especially where he needs to. As the audiologist explained, his hearing is totally intact in the range where sounds are heard and learned and speech is formed. He hears "R" and "C" and "S" and "T" and all the specific sounds across the range that he will need to develop as he broadens his language skills. He should not need special instruction or a speech therapist or hearing aids or anything along those lines. The audiologist seemed quite confident in her assessment of his situation. That said, he does have some hearing loss at the very high end of the range. As it was explained by the audiologist, this does not have any impact on him functionally, but it is there. This is most likely the result of Cisplatin in his induction treatment and there is nothing that we could have done to change that. Bottom line: If you're trying to get Andrew's attention by softly blowing on a piccolo, it's probably not going to happen.
Along with his heart, lungs, liver, kidneys and thyroid, his hearing is something that we will have to monitor for years going forward, as there is the possibility of delayed effects, where he might suffer a drop-off in hearing down the road. Still, at over a year post-transplant--and (touch wood) no more chemotherapy in his future--this is an excellent place to find ourselves in. To say this week brought us considerable relief would be a massive understatement....
But now, to quickly change gears, we do want to give a short reminder that September is Pediatric Cancer Awareness Month and, in particular, today--September 12--is (was) Pediatric Cancer Awareness Day. Gold is the color for pediatric cancer and today, just like last year, we flew gold balloons outside our house to mark the day. Again like last year, after the weekend, we will take our balloons down, place them in an envelope and send them to our representatives to remind them that pediatric cancer needs their attention and funding for research. We encourage everyone to participate in whatever way you feel inspired to raise awareness for pediatric cancer, especially at this time of year. As always, thank you for your love and support.
Paul
The good news--no, the GREAT news--is that Andrew hears well. Really well. Not perfectly well, but really well, especially where he needs to. As the audiologist explained, his hearing is totally intact in the range where sounds are heard and learned and speech is formed. He hears "R" and "C" and "S" and "T" and all the specific sounds across the range that he will need to develop as he broadens his language skills. He should not need special instruction or a speech therapist or hearing aids or anything along those lines. The audiologist seemed quite confident in her assessment of his situation. That said, he does have some hearing loss at the very high end of the range. As it was explained by the audiologist, this does not have any impact on him functionally, but it is there. This is most likely the result of Cisplatin in his induction treatment and there is nothing that we could have done to change that. Bottom line: If you're trying to get Andrew's attention by softly blowing on a piccolo, it's probably not going to happen.
Along with his heart, lungs, liver, kidneys and thyroid, his hearing is something that we will have to monitor for years going forward, as there is the possibility of delayed effects, where he might suffer a drop-off in hearing down the road. Still, at over a year post-transplant--and (touch wood) no more chemotherapy in his future--this is an excellent place to find ourselves in. To say this week brought us considerable relief would be a massive understatement....
But now, to quickly change gears, we do want to give a short reminder that September is Pediatric Cancer Awareness Month and, in particular, today--September 12--is (was) Pediatric Cancer Awareness Day. Gold is the color for pediatric cancer and today, just like last year, we flew gold balloons outside our house to mark the day. Again like last year, after the weekend, we will take our balloons down, place them in an envelope and send them to our representatives to remind them that pediatric cancer needs their attention and funding for research. We encourage everyone to participate in whatever way you feel inspired to raise awareness for pediatric cancer, especially at this time of year. As always, thank you for your love and support.
Paul
Thursday, September 10, 2009
Houston, we have vaccination!
As always, we are weeks behind with this post. It doesn't make it any less important, though. We have been dealing with back-to-school and are a bit overwhelmed with Open Houses, Meet-And-Greets, Picnics, Drop-Ins, Coffees, Conferences and whathaveyou, so that cuts into our allocated blog time. The point, however, is that we did make it to Houston on the back of our family vacation (which was AWESOME--more on that below), where Andrew received his Neuroblastoma vaccine at Texas Children's Hospital. If I am being honest, it was shockingly mundane and anti-climactic. In fact, here is the "money shot" of our visit there:
Can you see the utter boredom in Andrew's expression? Yawn.... However, scientifically, it is downright incredible what they are able to do in this day and age (at least, conceptually). In this case, they took Andrew's blood earlier in the year and then spent several months manipulating it by singling out his T-cells (which the immune system uses to fight infections) and then genetically retrofitting them with a particular receptor that binds with Neuroblastoma cells. They put these "souped up" T-cells back into Andrew with the idea that they will now seek out any stray Neuroblastoma cells and attack them, since the T-cell will be binding directly to the cancer. You have to admit, that's pretty cool, huh?
Granted, this is a Phase 2 clinical trial, so we recognize that it is not proven treatment; still we give them credit for coming up with it and choose to look at it as another possible approach to preventing relapse. The best part of it is that it had essentially no impact on Andrew in terms of side effects. No nausea, no vomiting, no hair loss or hearing impairment, no adverse effect on his organs, no reduced blood counts, etc. A few minutes to infuse, a few hours of monitoring for any reaction and then...home. This is not to say that this is completely risk-free; it is not. The biggest concern with this treatment is the possibility that, by manipulating his blood, we end up giving him a secondary cancer--leukemia or lymphoma--down the road. We understand those odds to be low, so this was a risk we were prepared to take. Still, as it seems with all cancer treatment, we are potentially bartering tomorrow's health and quality of life for today....
On to sunnier topics--literally: Vacation. And what a swell vacation it was! The Martinez Clan headed for the islands and had waaaay too much fun in the pool, on the beach and in the ocean. Highlights included Lucia snorkeling and Andrew swimming like a shark. Check it out:
(Yes, that is Andrew putting up the "shark fin" when he swims....)
I have to say, though, the real value-added came in the form of our visit to Houston, where we were able to spend some time catching up with my aunts, uncle and cousins--the first time we had seen them since my dad's funeral--and where Lucia and Andrew were able to meet and play with their second cousins. There was no hesitation on anyone's part; they were immediately in it and thick as thieves in whatever they were playing. It reminded me of my visits to Houston growing up and how my sister, brother and I would immediately bond with our cousins and fall right into whatever game or activity without missing a beat. History does, in fact, repeat....
If that doesn't look like pending mischief, I don't know what does. Good for them.
Paul
Can you see the utter boredom in Andrew's expression? Yawn.... However, scientifically, it is downright incredible what they are able to do in this day and age (at least, conceptually). In this case, they took Andrew's blood earlier in the year and then spent several months manipulating it by singling out his T-cells (which the immune system uses to fight infections) and then genetically retrofitting them with a particular receptor that binds with Neuroblastoma cells. They put these "souped up" T-cells back into Andrew with the idea that they will now seek out any stray Neuroblastoma cells and attack them, since the T-cell will be binding directly to the cancer. You have to admit, that's pretty cool, huh?
Granted, this is a Phase 2 clinical trial, so we recognize that it is not proven treatment; still we give them credit for coming up with it and choose to look at it as another possible approach to preventing relapse. The best part of it is that it had essentially no impact on Andrew in terms of side effects. No nausea, no vomiting, no hair loss or hearing impairment, no adverse effect on his organs, no reduced blood counts, etc. A few minutes to infuse, a few hours of monitoring for any reaction and then...home. This is not to say that this is completely risk-free; it is not. The biggest concern with this treatment is the possibility that, by manipulating his blood, we end up giving him a secondary cancer--leukemia or lymphoma--down the road. We understand those odds to be low, so this was a risk we were prepared to take. Still, as it seems with all cancer treatment, we are potentially bartering tomorrow's health and quality of life for today....
On to sunnier topics--literally: Vacation. And what a swell vacation it was! The Martinez Clan headed for the islands and had waaaay too much fun in the pool, on the beach and in the ocean. Highlights included Lucia snorkeling and Andrew swimming like a shark. Check it out:
(Yes, that is Andrew putting up the "shark fin" when he swims....)
I have to say, though, the real value-added came in the form of our visit to Houston, where we were able to spend some time catching up with my aunts, uncle and cousins--the first time we had seen them since my dad's funeral--and where Lucia and Andrew were able to meet and play with their second cousins. There was no hesitation on anyone's part; they were immediately in it and thick as thieves in whatever they were playing. It reminded me of my visits to Houston growing up and how my sister, brother and I would immediately bond with our cousins and fall right into whatever game or activity without missing a beat. History does, in fact, repeat....
If that doesn't look like pending mischief, I don't know what does. Good for them.
Paul
Saturday, August 1, 2009
A Quarter To Spare
No, this blog is not dead. Nor are we, for that matter. We are, however, pathetic and inconsistent bloggers.... As the saying goes, though: No news is good news and that is our situation indeed.
This week was Scan Week. Yep, it's already been 3 months since Andrew's last set of tests. Tuesday was a CT scan, Wednesday and Thursday were MiBG scans, and Thursday was also a bone marrow biopsy. And we threw in a blood chemistry and urinalysis for kicks.
We do not have all results back yet, but so far, the CT and MiBG reports are negative for Neuroblastoma and his blood work looks decent (setting aside his perpetually low hemoglobin). We will not get bone marrow results or the urinalysis until next week, but--in light of everything else--we're fairly convinced that they will be fine, too. Andrew looks to be remaining NED. Next scans October.
In the meantime, we have also had a development: Texas Children's Cancer Center finally called to let us know that they have Andrew's vaccine ready. We will be traveling to Houston in late August for the infusion. In fact, the way things have worked out, we are going to piggyback that stop in Houston onto the end of our family vacation with Cynthia's family. So, a week vacation on the beach followed by a return trip via Houston for some ultra-sophisticated T-cells. That seems balanced. We also look forward to the opportunity to see my family in Houston and get a nice, though short, visit in.
As for summer, well, it's been quite...summer-y: Lots of playing, swimming, lounging, frozen treats, etc. Lucia went to camp and came home filthy and exhausted each day, while bearing "gifts" of mudballs. Andrew also went to camp/school to help him catch up a bit on his fine motor skills. He seems to have enjoyed it and we have quite a bit of art to prove it. Perhaps most importantly, Lucia and Andrew have had this summer simply to play together, something that eluded them last summer. Most days, Cynthia and I would come home from work to see the two of them exploring together in the backyard or working out the details of some elaborate game or putting Cowboy through dog school or whatever. It's quite an endearing sight and it more than makes up for the times when they are bickering and needling and irritating one another.... It also lets us know how close they truly are and serves to remind us how lonely they probably were last summer, without each other most of the time. As a reminder, this time last year was Day +31 (out of 40, with a side car of another 2 weeks shortly thereafter) of Andrew's transplant; Lucia missed her little brother.
This summer does not resemble that at all. In fact, here is a taste of our day today:
Yes, that's right: A backyard sprinkler followed by an afternoon at the beach. Must be summertime.... We hope you are enjoying your summer days as much as we are.
Paul
This week was Scan Week. Yep, it's already been 3 months since Andrew's last set of tests. Tuesday was a CT scan, Wednesday and Thursday were MiBG scans, and Thursday was also a bone marrow biopsy. And we threw in a blood chemistry and urinalysis for kicks.
We do not have all results back yet, but so far, the CT and MiBG reports are negative for Neuroblastoma and his blood work looks decent (setting aside his perpetually low hemoglobin). We will not get bone marrow results or the urinalysis until next week, but--in light of everything else--we're fairly convinced that they will be fine, too. Andrew looks to be remaining NED. Next scans October.
In the meantime, we have also had a development: Texas Children's Cancer Center finally called to let us know that they have Andrew's vaccine ready. We will be traveling to Houston in late August for the infusion. In fact, the way things have worked out, we are going to piggyback that stop in Houston onto the end of our family vacation with Cynthia's family. So, a week vacation on the beach followed by a return trip via Houston for some ultra-sophisticated T-cells. That seems balanced. We also look forward to the opportunity to see my family in Houston and get a nice, though short, visit in.
As for summer, well, it's been quite...summer-y: Lots of playing, swimming, lounging, frozen treats, etc. Lucia went to camp and came home filthy and exhausted each day, while bearing "gifts" of mudballs. Andrew also went to camp/school to help him catch up a bit on his fine motor skills. He seems to have enjoyed it and we have quite a bit of art to prove it. Perhaps most importantly, Lucia and Andrew have had this summer simply to play together, something that eluded them last summer. Most days, Cynthia and I would come home from work to see the two of them exploring together in the backyard or working out the details of some elaborate game or putting Cowboy through dog school or whatever. It's quite an endearing sight and it more than makes up for the times when they are bickering and needling and irritating one another.... It also lets us know how close they truly are and serves to remind us how lonely they probably were last summer, without each other most of the time. As a reminder, this time last year was Day +31 (out of 40, with a side car of another 2 weeks shortly thereafter) of Andrew's transplant; Lucia missed her little brother.
This summer does not resemble that at all. In fact, here is a taste of our day today:
Yes, that's right: A backyard sprinkler followed by an afternoon at the beach. Must be summertime.... We hope you are enjoying your summer days as much as we are.
Paul
Sunday, June 14, 2009
Without A Brace
On Thursday, we went to see Dr. Femino for our late follow-up appointment, post biopsy. Andrew had to get an X-ray of his leg done first--he was excellent at holding perfectly still on the table for the X-ray technician--and then we were off to see Dr. Femino. Dr. Femino asked Andrew to walk for him, examined his shin, reviewed the X-rays and then weighed in with his verdict: A clean bill of health. No more brace, no restrictions, no more follow-ups. In short, the best kind of doctor visit. In a nice bit of coincidence, Andrew asked if he was allowed to run now (which is pretty comical, considering he's been running around this whole time, though apparently it doesn't count when you're wearing a brace) and Dr. Femino let him know that, in fact, running would be good for his bones and he should definitely do it--a lot. With that bit of encouragement (bait?), we are now focusing our attention on turning him into a marathoner....
Friday was the last day of school for Andrew and Lucia. Lucia was singing "School's Out (For Summer)" at breakfast that morning; that should give you an indication of where her head has been lately. I have to say, it was a good feeling to arrive at that day, though. I'm sure the kids don't fully get it, but I know that Cynthia and I felt such a sense of accomplishment for them both to get there. On the back of the year that they have both had, they should be very proud to be where they stand today. And, as I mentioned previously, we are now just looking forward to summer. Plain ol' regular, uneventful, non-sick summer.
Last thing, which we've wanted to post about for a while now, but haven't (probably because we didn't want to jinx it), but Andrew is now potty trained. We (that would be Cynthia and I) finally stepped up and committed to it several weeks ago and Andrew sailed right through with minimal fuss. So, he now wears his Incredibles, or his Wall E's, or his Cars, or his Diego's and he is all about the potty. It's amazing what you can accomplish when you just put your mind to it....
Take care, and again, enjoy your summer days.
Paul
Friday was the last day of school for Andrew and Lucia. Lucia was singing "School's Out (For Summer)" at breakfast that morning; that should give you an indication of where her head has been lately. I have to say, it was a good feeling to arrive at that day, though. I'm sure the kids don't fully get it, but I know that Cynthia and I felt such a sense of accomplishment for them both to get there. On the back of the year that they have both had, they should be very proud to be where they stand today. And, as I mentioned previously, we are now just looking forward to summer. Plain ol' regular, uneventful, non-sick summer.
Last thing, which we've wanted to post about for a while now, but haven't (probably because we didn't want to jinx it), but Andrew is now potty trained. We (that would be Cynthia and I) finally stepped up and committed to it several weeks ago and Andrew sailed right through with minimal fuss. So, he now wears his Incredibles, or his Wall E's, or his Cars, or his Diego's and he is all about the potty. It's amazing what you can accomplish when you just put your mind to it....
Take care, and again, enjoy your summer days.
Paul
Sunday, June 7, 2009
Photo Essay
A picture is supposed to be worth a thousand words. We're not sure that our photos necessarily meet that standard, but we're thinking they should at least save us a couple of paragraphs on this blog. Here is a quick summary of how we have spent our time since our last post:
Mother's Day (I'm not allowed to show Cynthia's face this early in the morning):
Memorial Day Weekend in San Diego:
Paul's Birthday:
Bathtime for Cowboy:
In the back of a cop car (they were being really bad, trust us):
Riding the train at the City of Hope Picnic:
Not a bad attempt at "normal," if we do say so ourselves.
Andrew just had a check up at City of Hope on Friday and the good news is that he is continuing to improve: He has gained a bit of weight, as well as a smidgen of height. Keep up the good work, kid. The so-so news is that his hair remains in the "needs improvement" category, along with his hemoglobin. At last check (Friday), that is logging in at a bantam 7.8. Still, this is off the floor of 7.0 that he had in April, so we are choosing to look on this as "progress." He does manage to function pretty decently for a kid with a 7.8, so we can be patient here.
School ends this week and the summer looks to be all about camp: Camp camp, school camp, computer camp, you-name-it camp. Both Andrew and Lucia are signed up for full rosters of activities to keep them nice and busy. We are excited for them both, as they will be exploring and learning, trying new things and generally carrying on with life after a year plus of unnatural, disjointed and interrupted childhood. We pray that this is the beginning of many, many more summers of just plain ol' living.
In the meantime, if you have time in your thoughts and prayers, we certainly wouldn't say no to any wishes for some increased hemoglobin. And some added hair follicle activity wouldn't hurt either....
Thanks, everyone, we hope you have a safe and fun summer.
Paul
Mother's Day (I'm not allowed to show Cynthia's face this early in the morning):
Memorial Day Weekend in San Diego:
Paul's Birthday:
Bathtime for Cowboy:
In the back of a cop car (they were being really bad, trust us):
Riding the train at the City of Hope Picnic:
Not a bad attempt at "normal," if we do say so ourselves.
Andrew just had a check up at City of Hope on Friday and the good news is that he is continuing to improve: He has gained a bit of weight, as well as a smidgen of height. Keep up the good work, kid. The so-so news is that his hair remains in the "needs improvement" category, along with his hemoglobin. At last check (Friday), that is logging in at a bantam 7.8. Still, this is off the floor of 7.0 that he had in April, so we are choosing to look on this as "progress." He does manage to function pretty decently for a kid with a 7.8, so we can be patient here.
School ends this week and the summer looks to be all about camp: Camp camp, school camp, computer camp, you-name-it camp. Both Andrew and Lucia are signed up for full rosters of activities to keep them nice and busy. We are excited for them both, as they will be exploring and learning, trying new things and generally carrying on with life after a year plus of unnatural, disjointed and interrupted childhood. We pray that this is the beginning of many, many more summers of just plain ol' living.
In the meantime, if you have time in your thoughts and prayers, we certainly wouldn't say no to any wishes for some increased hemoglobin. And some added hair follicle activity wouldn't hurt either....
Thanks, everyone, we hope you have a safe and fun summer.
Paul
Thursday, May 7, 2009
STRESS (fracture)
It's official. We had our follow-up appointment with Dr. Femino today and I have a copy of the biopsy report in my hands, which clearly states, "NO EVIDENCE OF NEUROBLASTOMA." I suppose it is also worth mentioning that there is no sign of tuberculosis, staph, salmonella, swine flu, or any other such ailment. It is, quite simply, a stress fracture and--to state the obvious--that heals without chemo or radiation or antibodies or any kind of treatment. That's the kind of medical problem we will take anytime, anywhere.
I don't know if I can adequately convey what it's like to go from having the possibility of trauma, i.e. stress fracture, essentially ruled out just over a week ago--that hope taken away--to absolutely confirmed trauma this week. Not to make a bad joke, but talk about trauma.... Oy! Yet, if I am being honest, I would tell you that--as grim as I considered things could be for Andrew, for us--I never fully bought into the possibility of relapse. And that has to do with my dad.
I haven't written about my dad here since his death, but the fact is that I think about him a lot, I miss him--especially at times like these--and I talk to him as I feel I need to. Needless to say, I have been doing a lot of talking lately.... Of course, there are many reasons for this, but the greatest has to do with the bond that I feel exists between my dad and Andrew. This is something that occurred to me at my dad's death and that I spoke about in my eulogy at his memorial service. In light of the last few weeks, I wanted to post the text of that speech here, because this is where I placed my faith while we awaited these results:
Sunday was the one-year anniversary of Andrew’s cancer diagnosis and start of treatment. It marked the day that he became a survivor and began his fight, all at once.
Sunday was also the day that my dad died at the hands of that same unforgiving disease. What might have been a time of… not quite celebration, but perhaps accomplishment and cautious optimism, was rendered, instead, a time of complete sorrow and loss. And yet, it was not a surprise. I knew on the Thursday before, when I heard from my brother about my dad’s deteriorating condition, that Sunday would be the day. I don’t know how or why or for what purpose, but such was the connection between my dad and my son.
If I attempt to reconcile the events of Sunday—to somehow relate them into a shared sentiment—it would be that of relief: Relief that Andrew has responded so well to treatment and is without disease on this anniversary; and relief that my dad, too, is no longer ill, no longer in pain, no longer suffering. He died peacefully, surrounded by family and friends.
For those of you who might not have known my dad, he was the epitome of “role model.” In fact, I would say that is the description you will hear most in connection with him. Certainly, his example is the one that I aspire to and try to emulate each day. It is no easy task, as he set quite a high bar: He was a loyal and adoring husband for 45 years; he was a loving and supportive father to his three children, giving us every opportunity and advantage in life; he was the “stand-in” father for many other children—foreign exchange students and neighborhood friends—who weren’t his, but whom he loved and cared for as if they were; he was a tireless professional and compassionate physician, going above and beyond in the care of his patients and bringing life and joy into the world; he was a passionate collector and student of art, immersing himself in a chosen medium or style or period until he had completely exhausted and satisfied his curiosity; he was a devoted son; he was a thoughtful sibling; he was an admiring grandfather. He was respected by his colleagues and peers. He was actively involved in the enrichment of his community. He gave service to others, always placing their needs ahead of his own.
My dad possessed so many fine qualities: Integrity, humility, grace. He did not like to call attention to himself; he worked in the background of our family, preferring to give the front of the stage to my mom. But my dad was endowed with a calm strength and a sense of control that provided a firm foundation for all of us. He was passionate about his work, pursuing it with diligence and purpose. He had an innate curiosity and was constantly learning. He was generous with his time and his knowledge. He was poised and practical and without pretense. But, perhaps most of all, my dad was kind—just genuinely kind.
I spent the majority of the past year speaking with my dad a lot--almost daily, in fact. Granted, these were not the most enjoyable of conversations; the subject matter was arduous and uncomfortable, centered largely on Andrew’s disease and treatment. Our talks were mostly medical jargon and numbers and statistics and anatomy and biology lessons. In July, we traveled together to Chicago for a conference—just the two of us, off on an adventure. It was something we had never done before. Again, it was not pleasure: It was two solid days of cancer lectures and discussions. Of course, now, those circumstances become irrelevant; I am so grateful for that time and experience—after all, time together is time together, and that, in particular, was a time when my dad shined. He was in his element there, eagerly attending the presentations, taking notes and adding his own commentary and observations. He was interested in meeting the other families and kids there and in learning about their situations, listening attentively to their stories and offering his advice or sympathy or whatever was called for. It was impressive and inspiring to watch him work.
What I cannot stress enough about the past year is how much my dad helped me to navigate such a difficult time and hold myself together. Throughout that time, he was a resource and an asset, teaching me the necessary science and medicine; he was a guide and a mentor, encouraging me to be a better advocate, while also providing critical perspective; and he was a bed of comfort and support during the most challenging and dire moments. Despite his own sadness and distress over Andrew, my dad never faltered in supporting me, remaining calm and strong and steadfast. His insight and expertise were invaluable and I will never be able to thank him enough for what he did for me and my family during that time.
When my dad fell ill and was subsequently diagnosed with his cancer toward the end of last year, my instinctive and overwhelming reaction was to seek treatment for him and I scoured the country looking for experts who could help him. Perhaps that was my way of trying to repay him for what he had done for me with Andrew’s treatment…? It was also a byproduct of the “wartime” mentality that I have been in for the past year: There is no surrender. When you are battling cancer, it does not occur to you to not. Yet, my dad had other ideas: Quietly and without fuss, he opted not to treat. It was a concept so foreign to me that I simply could not understand, and certainly could not accept. But, in essence, my dad chose to die in the same way that he had chosen to live.
In truth, I only understood and accepted his decision when I finally saw him again this past weekend, dying. It was then that the wisdom, the integrity, the strength and the courage of his decision became clear to me. My dad knew better than any of us what was in store for him. I recognize now that I have witnessed one of the bravest acts of my life and I am so, so proud of my dad for showing it to me. It is one thing to duck death, to cheat it here or there where you can, and to bargain and barter for more time: But it is quite another to simply accept it, walk toward it with a quiet and unflinching resolve and embrace it. And in that regard, I am grateful to the cancer: It was relentless and unforgiving, and it was mercifully quick.
And now, I am back to Sunday, January 18th. For me, I can’t help but believe that there is great meaning in my dad passing on that day. His concern for Andrew was almost all-consuming: Even in his illness, with his health rapidly declining, he would get on the phone with me only to ask how Andrew was doing. Theirs was a profound connection and, certainly, there is no separating them now: They will forever share that day.
My own belief is that my dad took it upon himself to clear whatever debt it was that Andrew might have owed. Perhaps he entered into some grand existential exchange; perhaps he chose to embark on a path where he will be watching over and sheltering Andrew; or perhaps he made some other arrangement…. Regardless, it gives me tremendous comfort to consider those possibilities.
It also means that, though I miss my dad—achingly, every day—I gain a certain peace when I look at my son and know that my dad is—and will be forever—quite present and close.
Thank you, dad. I love you and I miss you.
That is how I believe Andrew will stay safe. Stay healthy. Stay cancer-free. And, as the fortune cookie said, Live a long, prosperous life....
Good night.
Paul
I don't know if I can adequately convey what it's like to go from having the possibility of trauma, i.e. stress fracture, essentially ruled out just over a week ago--that hope taken away--to absolutely confirmed trauma this week. Not to make a bad joke, but talk about trauma.... Oy! Yet, if I am being honest, I would tell you that--as grim as I considered things could be for Andrew, for us--I never fully bought into the possibility of relapse. And that has to do with my dad.
I haven't written about my dad here since his death, but the fact is that I think about him a lot, I miss him--especially at times like these--and I talk to him as I feel I need to. Needless to say, I have been doing a lot of talking lately.... Of course, there are many reasons for this, but the greatest has to do with the bond that I feel exists between my dad and Andrew. This is something that occurred to me at my dad's death and that I spoke about in my eulogy at his memorial service. In light of the last few weeks, I wanted to post the text of that speech here, because this is where I placed my faith while we awaited these results:
Sunday was the one-year anniversary of Andrew’s cancer diagnosis and start of treatment. It marked the day that he became a survivor and began his fight, all at once.
Sunday was also the day that my dad died at the hands of that same unforgiving disease. What might have been a time of… not quite celebration, but perhaps accomplishment and cautious optimism, was rendered, instead, a time of complete sorrow and loss. And yet, it was not a surprise. I knew on the Thursday before, when I heard from my brother about my dad’s deteriorating condition, that Sunday would be the day. I don’t know how or why or for what purpose, but such was the connection between my dad and my son.
If I attempt to reconcile the events of Sunday—to somehow relate them into a shared sentiment—it would be that of relief: Relief that Andrew has responded so well to treatment and is without disease on this anniversary; and relief that my dad, too, is no longer ill, no longer in pain, no longer suffering. He died peacefully, surrounded by family and friends.
For those of you who might not have known my dad, he was the epitome of “role model.” In fact, I would say that is the description you will hear most in connection with him. Certainly, his example is the one that I aspire to and try to emulate each day. It is no easy task, as he set quite a high bar: He was a loyal and adoring husband for 45 years; he was a loving and supportive father to his three children, giving us every opportunity and advantage in life; he was the “stand-in” father for many other children—foreign exchange students and neighborhood friends—who weren’t his, but whom he loved and cared for as if they were; he was a tireless professional and compassionate physician, going above and beyond in the care of his patients and bringing life and joy into the world; he was a passionate collector and student of art, immersing himself in a chosen medium or style or period until he had completely exhausted and satisfied his curiosity; he was a devoted son; he was a thoughtful sibling; he was an admiring grandfather. He was respected by his colleagues and peers. He was actively involved in the enrichment of his community. He gave service to others, always placing their needs ahead of his own.
My dad possessed so many fine qualities: Integrity, humility, grace. He did not like to call attention to himself; he worked in the background of our family, preferring to give the front of the stage to my mom. But my dad was endowed with a calm strength and a sense of control that provided a firm foundation for all of us. He was passionate about his work, pursuing it with diligence and purpose. He had an innate curiosity and was constantly learning. He was generous with his time and his knowledge. He was poised and practical and without pretense. But, perhaps most of all, my dad was kind—just genuinely kind.
I spent the majority of the past year speaking with my dad a lot--almost daily, in fact. Granted, these were not the most enjoyable of conversations; the subject matter was arduous and uncomfortable, centered largely on Andrew’s disease and treatment. Our talks were mostly medical jargon and numbers and statistics and anatomy and biology lessons. In July, we traveled together to Chicago for a conference—just the two of us, off on an adventure. It was something we had never done before. Again, it was not pleasure: It was two solid days of cancer lectures and discussions. Of course, now, those circumstances become irrelevant; I am so grateful for that time and experience—after all, time together is time together, and that, in particular, was a time when my dad shined. He was in his element there, eagerly attending the presentations, taking notes and adding his own commentary and observations. He was interested in meeting the other families and kids there and in learning about their situations, listening attentively to their stories and offering his advice or sympathy or whatever was called for. It was impressive and inspiring to watch him work.
What I cannot stress enough about the past year is how much my dad helped me to navigate such a difficult time and hold myself together. Throughout that time, he was a resource and an asset, teaching me the necessary science and medicine; he was a guide and a mentor, encouraging me to be a better advocate, while also providing critical perspective; and he was a bed of comfort and support during the most challenging and dire moments. Despite his own sadness and distress over Andrew, my dad never faltered in supporting me, remaining calm and strong and steadfast. His insight and expertise were invaluable and I will never be able to thank him enough for what he did for me and my family during that time.
When my dad fell ill and was subsequently diagnosed with his cancer toward the end of last year, my instinctive and overwhelming reaction was to seek treatment for him and I scoured the country looking for experts who could help him. Perhaps that was my way of trying to repay him for what he had done for me with Andrew’s treatment…? It was also a byproduct of the “wartime” mentality that I have been in for the past year: There is no surrender. When you are battling cancer, it does not occur to you to not. Yet, my dad had other ideas: Quietly and without fuss, he opted not to treat. It was a concept so foreign to me that I simply could not understand, and certainly could not accept. But, in essence, my dad chose to die in the same way that he had chosen to live.
In truth, I only understood and accepted his decision when I finally saw him again this past weekend, dying. It was then that the wisdom, the integrity, the strength and the courage of his decision became clear to me. My dad knew better than any of us what was in store for him. I recognize now that I have witnessed one of the bravest acts of my life and I am so, so proud of my dad for showing it to me. It is one thing to duck death, to cheat it here or there where you can, and to bargain and barter for more time: But it is quite another to simply accept it, walk toward it with a quiet and unflinching resolve and embrace it. And in that regard, I am grateful to the cancer: It was relentless and unforgiving, and it was mercifully quick.
And now, I am back to Sunday, January 18th. For me, I can’t help but believe that there is great meaning in my dad passing on that day. His concern for Andrew was almost all-consuming: Even in his illness, with his health rapidly declining, he would get on the phone with me only to ask how Andrew was doing. Theirs was a profound connection and, certainly, there is no separating them now: They will forever share that day.
My own belief is that my dad took it upon himself to clear whatever debt it was that Andrew might have owed. Perhaps he entered into some grand existential exchange; perhaps he chose to embark on a path where he will be watching over and sheltering Andrew; or perhaps he made some other arrangement…. Regardless, it gives me tremendous comfort to consider those possibilities.
It also means that, though I miss my dad—achingly, every day—I gain a certain peace when I look at my son and know that my dad is—and will be forever—quite present and close.
Thank you, dad. I love you and I miss you.
That is how I believe Andrew will stay safe. Stay healthy. Stay cancer-free. And, as the fortune cookie said, Live a long, prosperous life....
Good night.
Paul
Monday, May 4, 2009
GREAT NEWS
We just got the call from City of Hope regarding the official pathology report - BRUISED BONE!!!! WOOHOO!!! Will post more later - off to celebrate!
Wednesday, April 29, 2009
Biopsy Wednesday
Andrew's surgery went smoothly today. He was a little cranky this morning since he couldn't eat anything before the surgery but the operating room nurses showered him with toys to keep him happy. He was finally able to eat a meal at 6pm tonight - pizza of course followed by some gelato. Andrew is still in pain and is not liking the brace he has to wear for 6 weeks but we gave him a little bit of Tylenol with codeine and he is currently sleeping the night away. Hopefully he'll stay asleep tonight and the pain will be a little less in the morning.
After the surgery the doctor told us that the frozen sample from the biopsy came back clear, i.e. no cancerous cells were found. Yeah!! Of course we need to wait for the full analysis before we really are in the clear but this is a good first step. I believe in the last post we thought we would receive the complete report in a couple of days but we have been told it will take 5-7 days--something about the decalcification of the bone taking a while, etc.... So we will wait and pray a lot and hope that we continue to get good news. It has been a long week already, all we have really been able to do is concentrate on breathing and staying positive. We are wiped out just from that. Oh that and a quick little two-night stay at the hospital this weekend. Almost forgot to tell you about that.
All last week Andrew had a cold and a cough - no big thing, he was happy and eating and playing normally. The cold didn't seem to bother him until Saturday night, of course.... Andrew got a fever, so off to the emergency room he went. After drawing blood and seeing that his white blood cell count was high, we knew he was fighting something we just didn't know what just yet, so he was admitted. The next day the diagnosis came back - it was the flu (not swine thank goodness!). They still wanted to keep us one more night just in case so we stayed Sunday night as well. Monday morning came and they decided to discharge him since he was fever-free for close to 48 hours and nothing was growing in the blood cultures. Good news is we got to do most of Andrew's pre-op while we were in-patient so Tuesday's pre-op appt was rather fast. He still has a little bit of a cough but is otherwise recovered from the flu.
So continue to pray for good news, that his leg heals and that he is not in too much pain. And thank you all for the support and words of encouragement - you have no idea how much strength it gives us.
Cynthia
After the surgery the doctor told us that the frozen sample from the biopsy came back clear, i.e. no cancerous cells were found. Yeah!! Of course we need to wait for the full analysis before we really are in the clear but this is a good first step. I believe in the last post we thought we would receive the complete report in a couple of days but we have been told it will take 5-7 days--something about the decalcification of the bone taking a while, etc.... So we will wait and pray a lot and hope that we continue to get good news. It has been a long week already, all we have really been able to do is concentrate on breathing and staying positive. We are wiped out just from that. Oh that and a quick little two-night stay at the hospital this weekend. Almost forgot to tell you about that.
All last week Andrew had a cold and a cough - no big thing, he was happy and eating and playing normally. The cold didn't seem to bother him until Saturday night, of course.... Andrew got a fever, so off to the emergency room he went. After drawing blood and seeing that his white blood cell count was high, we knew he was fighting something we just didn't know what just yet, so he was admitted. The next day the diagnosis came back - it was the flu (not swine thank goodness!). They still wanted to keep us one more night just in case so we stayed Sunday night as well. Monday morning came and they decided to discharge him since he was fever-free for close to 48 hours and nothing was growing in the blood cultures. Good news is we got to do most of Andrew's pre-op while we were in-patient so Tuesday's pre-op appt was rather fast. He still has a little bit of a cough but is otherwise recovered from the flu.
So continue to pray for good news, that his leg heals and that he is not in too much pain. And thank you all for the support and words of encouragement - you have no idea how much strength it gives us.
Cynthia
Thursday, April 23, 2009
Sober Reality
We promised to keep you posted, but this is not an easy or comfortable update to give. Andrew had an MRI of his right leg on Tuesday. The purpose was to get a better look at the spot on his shin that appeared on the bone scan the other week. The MRI revealed a "lesion" on his shin. According to the radiologist's report, there are only three possible explanations: Trauma, infection, cancer. Of those, she largely ruled out trauma. And the causes of infection--staph, salmonella, TB--seem, quite frankly, far-fetched. As the doctor was explaining all of this to us yesterday and running down the possible choices, I realized what a strange world we inhabit: I found myself hoping for Tuberculosis. I thought, I'd take Tuberculosis. I could handle Tuberculosis. Tuberculosis can probably be beat.... Strange world, indeed.
Yesterday and today, Andrew underwent a repeat of the MiBG scan from a couple of weeks ago. In particular, they focused on his shin and we were given surprisingly good news there: MiBG negative. That is a start. A good start. Unfortunately, it is not necessarily the final word, because not all Neuroblastoma responds to MiBG and, of course, all sorts of other cancers don't. Still, we'll take what we can get right now.
So, the plan now is to have a biopsy performed on his shin. This will take place on Wednesday at City of Hope and the good news is that he will be in extremely capable hands. The pediatric orthopedic oncologist (say that three times fast), Dr. Femino, is excellent. The bad news is that, because this is bone that they are biopsying, it will take at least a couple of days to get results. And, at this point, it's the not knowing that's hardest to deal with.
Cynthia is trying to keep us (me) calm and grounded and in the present, but it is hard not to have your mind go to the worst places. Still, we're trying to simply move from one day to the next without getting too far ahead of ourselves. But, it's scary. We ask for prayers. We ask for good thoughts. We ask for healing powers. We ask for whatever you can muster for Andrew. We can take a fracture. We can deal with salmonella. We can fight a staph infection. (We think) we can duke it out with TB. But, we are paralyzed by the thought of relapse.
Thank you.
Paul & Cynthia
Yesterday and today, Andrew underwent a repeat of the MiBG scan from a couple of weeks ago. In particular, they focused on his shin and we were given surprisingly good news there: MiBG negative. That is a start. A good start. Unfortunately, it is not necessarily the final word, because not all Neuroblastoma responds to MiBG and, of course, all sorts of other cancers don't. Still, we'll take what we can get right now.
So, the plan now is to have a biopsy performed on his shin. This will take place on Wednesday at City of Hope and the good news is that he will be in extremely capable hands. The pediatric orthopedic oncologist (say that three times fast), Dr. Femino, is excellent. The bad news is that, because this is bone that they are biopsying, it will take at least a couple of days to get results. And, at this point, it's the not knowing that's hardest to deal with.
Cynthia is trying to keep us (me) calm and grounded and in the present, but it is hard not to have your mind go to the worst places. Still, we're trying to simply move from one day to the next without getting too far ahead of ourselves. But, it's scary. We ask for prayers. We ask for good thoughts. We ask for healing powers. We ask for whatever you can muster for Andrew. We can take a fracture. We can deal with salmonella. We can fight a staph infection. (We think) we can duke it out with TB. But, we are paralyzed by the thought of relapse.
Thank you.
Paul & Cynthia
Friday, April 10, 2009
Results.
Bone marrow biopsy: Negative.
GFR (kidney function): Normal.
CT: Clear.
Bone Scan: Fine, except for a spot on his right shin. Hmmm....
What does all this mean? Here's the break down: The bone marrow being negative continues to be great news. No cancer in there. The GFR test is also great news. Andrew's kidneys have taken a beating from a year of treatment, yet continue to perform well. (The kid may have cancer, but he was apparently blessed with strong organs). The clear CT is also, obviously, great news. There are no detectable masses or spots, meaning that they do not see anything in the liver area in particular (questionable after the last MiBG scan) or in the hip/upper leg (origin of the limp). Of course, that also means that we have no idea what is behind this strange outward turning of his leg and funny walk. They see no evidence of avascular necrosis (yay!) and no fluid build up in the hip; this is certainly all good, but it means that we have no explanation for that little oddity....
Last, but not least, is the bone scan. This is largely a good result, but it is not perfect. The good thing about a bone scan is that it shows any "defect" on the bones; the bad thing about a bone scan is that it shows ALL "defects" on the bones. In other words, the bone scan does not discriminate. It is non-specific that way, registering bruises, infections, and, yes, cancer. So, we feel pretty good and are reasonably confident that Andrew remains NED, but--and this simply must be our lot--once again, we did not get the overwhelming CLEAR sign that we were hoping for.... Andrew will go back to City of Hope the week after this for a more detailed look at this spot on the shin.
In the meantime, we're off to brand some cows! Have a great Easter weekend.
Paul
GFR (kidney function): Normal.
CT: Clear.
Bone Scan: Fine, except for a spot on his right shin. Hmmm....
What does all this mean? Here's the break down: The bone marrow being negative continues to be great news. No cancer in there. The GFR test is also great news. Andrew's kidneys have taken a beating from a year of treatment, yet continue to perform well. (The kid may have cancer, but he was apparently blessed with strong organs). The clear CT is also, obviously, great news. There are no detectable masses or spots, meaning that they do not see anything in the liver area in particular (questionable after the last MiBG scan) or in the hip/upper leg (origin of the limp). Of course, that also means that we have no idea what is behind this strange outward turning of his leg and funny walk. They see no evidence of avascular necrosis (yay!) and no fluid build up in the hip; this is certainly all good, but it means that we have no explanation for that little oddity....
Last, but not least, is the bone scan. This is largely a good result, but it is not perfect. The good thing about a bone scan is that it shows any "defect" on the bones; the bad thing about a bone scan is that it shows ALL "defects" on the bones. In other words, the bone scan does not discriminate. It is non-specific that way, registering bruises, infections, and, yes, cancer. So, we feel pretty good and are reasonably confident that Andrew remains NED, but--and this simply must be our lot--once again, we did not get the overwhelming CLEAR sign that we were hoping for.... Andrew will go back to City of Hope the week after this for a more detailed look at this spot on the shin.
In the meantime, we're off to brand some cows! Have a great Easter weekend.
Paul
Monday, April 6, 2009
The Good, The Bad and The Questionable.... Or, The Real Scan Week
We seem to have really shirked our blog responsibilities lately, but we have finally gotten enough calls and emails with guilt-inducing comments about not knowing what's going on and being in the dark, that we are settling in for a complete recap of the last several weeks. Without any further ado, here goes:
As you know, we miscounted our Accutane courses and ended up having to scrap the planned scan week, with the exception of the MiBG scan, which we were allowed to move forward on. Well, the results of the MiBG were not as clear cut as we would have liked. The way MiBG works, it's supposed to "light up" when there is Neuroblastoma present in a given site. There are some exceptions to this, e.g. it lights up Andrew's bladder, because that's how MiBG is excreted from the body, but in general, that is the idea. This latest MiBG showed some spot(s) lighting up in the area of Andrew's liver. This is unsettling to say the least. Our doc has tried to calm us and explain that it is very faint and it could be several other things, all of which are logical and possible. Still, not the slam dunk that we were hoping for. To paraphrase the radiologist's report: It's probably nothing, but metastasis can't be ruled out.... We are somehow managing to keep our sanity.
Quite literally at the same time, there was a press release that came out of the Children's Oncology Group in connection with the antibody clinical trial that Andrew participated in. In the course of reviewing some early (2 year) data, they saw a "statistically significant" benefit in children who had participated in the antibody arm of the study! So much so, that they are now attempting to modify the study such that all children being treated for high risk Neuroblastoma in the future will receive this antibody therapy. In other words, antibody treatment will eventually become part of the standard protocol for fighting this disease. For us, obviously, we are overjoyed and relieved that Andrew was randomized to this arm of the study and was able to receive this treatment. Certainly, it means that the additional 6 months of treatment were well worth it. If you would like to read the statement, it is here:
http://www.curesearch.org/uploadedFiles/Statement%20from%20COG%20regarding%20ANBL0032%20results%2003%2019%2009.pdf
To be fair, there is no indication of what "statistically significant" means in real numbers, but we'll take what we can get. Progress is progress.
So, with our mixed bag of news that day, we decided to do what any reasonable family would do and go skiing for the weekend. The truth is that we had planned to go skiing last year around this time, because Lucia was finally old enough to go into ski school and take lessons. Of course, that trip never happened. So, we decided that it was time to make it up. We drove up Friday afternoon and signed her up for all day ski school on Saturday. She loved it! Check her out in action:
Andrew preferred to ride the gondola and attack us with snowballs:
He somehow managed to have a good time....
We returned from our ski weekend and promptly enrolled Andrew in swim classes (the seasons change quickly around here). He dreads them, despite the fact that he can swim just fine. He cries and moans and constantly berates the instructor, asking, How many more laps? How much longer? When can we take a break? Etc. All of this is, of course, our own fault, because these are the types of systems we put in place to get him through treatment for the last year: Andrew, just 4 more shots; 6 more pills to swallow; 2 more medicines to drink; etc. He is now number-obsessed, as he counts down EVERYTHING to being done. We just didn't figure it would have fallout on the poor swim coach.
The other thing that happened after skiing was our first parent-teacher conference with Andrew's pre-school teacher. This is something that would normally have taken place in January, but she delayed meeting with us, since Andrew had missed so much school in the Fall and she really had no sense of where he was developmentally, socially, etc. As you know, we have been concerned about a number of things with Andrew, from basic socialization with other kids (whom he has not really been around) to cognitive issues from the array of drugs and treatments he has experienced. To be fair, he hasn't necessarily given us a specific reason to be concerned about anything, but we were eager, yet anxiety-ridden, to get an objective opinion of where he stood. It's not right to stake so much on a pre-school evaluation of a 3-year-old, but we really couldn't help ourselves. The good news and total relief is that, according to Mrs. Gutierrez, he is just fine and doing quite well. Except for scissors. Apparently, he sucks at scissors, but he's right on target everywhere else (well, except for potty-training, but that's a work in progress). SO, leaving aside scissor work and going potty, he is moving right along. Great, we'll take it.
We also took Andrew to the pediatric cardiologist to have his heart function checked. He had experienced various issues with his heart during the course of treatment last year, so the idea was to see where he stood now that treatment was over. The good news, again, is that his heart seems to be just fine. He posted good numbers (shortening fraction of 41, ejection fraction of 72 and no valve prolapses for all you cardiologists out there) and the doctor felt that there was nothing permanent to worry about. Again, huge relief. We are still trying to arrange for his hearing evaluation, so we will have to let you know the results of that next time.
In the meantime, we are now into the Official Real Scan Week (for real this time). In fact, we start tomorrow at 9AM with a bone marrow biopsy at City of Hope. Later this week, he will get a CT and a bone scan. This is both good news and not-so-good news. The good news is that the addition of the bone scan will give us added peace of mind that Andrew is still NED. Assuming it comes out clean. The not-so-good news is that the reason we are adding it to scan week is that Andrew has developed an awkward walk, where he turns his right leg out and limps oddly. Sometimes. And he complains that it hurts. Sometimes. Again, we are trying not to panic, as apparently this can happen post-transplant, as fluid can collect in the hip. Of course, we can't help but think about the not-so-clear MiBG scan and wonder if there is something uglier at work here. The bone scan will go a long way toward sorting all of this out for us. As always, we ask for your concerted thoughts and prayers this week as we go through these scan and await the results. We really believe there is no reason that Andrew should have any disease in him, but we also know that Neuroblastoma can be brutal that way.
That's where we are. We promise to give a prompt update as soon as we know more.
Love,
Paul & Cynthia
As you know, we miscounted our Accutane courses and ended up having to scrap the planned scan week, with the exception of the MiBG scan, which we were allowed to move forward on. Well, the results of the MiBG were not as clear cut as we would have liked. The way MiBG works, it's supposed to "light up" when there is Neuroblastoma present in a given site. There are some exceptions to this, e.g. it lights up Andrew's bladder, because that's how MiBG is excreted from the body, but in general, that is the idea. This latest MiBG showed some spot(s) lighting up in the area of Andrew's liver. This is unsettling to say the least. Our doc has tried to calm us and explain that it is very faint and it could be several other things, all of which are logical and possible. Still, not the slam dunk that we were hoping for. To paraphrase the radiologist's report: It's probably nothing, but metastasis can't be ruled out.... We are somehow managing to keep our sanity.
Quite literally at the same time, there was a press release that came out of the Children's Oncology Group in connection with the antibody clinical trial that Andrew participated in. In the course of reviewing some early (2 year) data, they saw a "statistically significant" benefit in children who had participated in the antibody arm of the study! So much so, that they are now attempting to modify the study such that all children being treated for high risk Neuroblastoma in the future will receive this antibody therapy. In other words, antibody treatment will eventually become part of the standard protocol for fighting this disease. For us, obviously, we are overjoyed and relieved that Andrew was randomized to this arm of the study and was able to receive this treatment. Certainly, it means that the additional 6 months of treatment were well worth it. If you would like to read the statement, it is here:
http://www.curesearch.org/uploadedFiles/Statement%20from%20COG%20regarding%20ANBL0032%20results%2003%2019%2009.pdf
To be fair, there is no indication of what "statistically significant" means in real numbers, but we'll take what we can get. Progress is progress.
So, with our mixed bag of news that day, we decided to do what any reasonable family would do and go skiing for the weekend. The truth is that we had planned to go skiing last year around this time, because Lucia was finally old enough to go into ski school and take lessons. Of course, that trip never happened. So, we decided that it was time to make it up. We drove up Friday afternoon and signed her up for all day ski school on Saturday. She loved it! Check her out in action:
Andrew preferred to ride the gondola and attack us with snowballs:
He somehow managed to have a good time....
We returned from our ski weekend and promptly enrolled Andrew in swim classes (the seasons change quickly around here). He dreads them, despite the fact that he can swim just fine. He cries and moans and constantly berates the instructor, asking, How many more laps? How much longer? When can we take a break? Etc. All of this is, of course, our own fault, because these are the types of systems we put in place to get him through treatment for the last year: Andrew, just 4 more shots; 6 more pills to swallow; 2 more medicines to drink; etc. He is now number-obsessed, as he counts down EVERYTHING to being done. We just didn't figure it would have fallout on the poor swim coach.
The other thing that happened after skiing was our first parent-teacher conference with Andrew's pre-school teacher. This is something that would normally have taken place in January, but she delayed meeting with us, since Andrew had missed so much school in the Fall and she really had no sense of where he was developmentally, socially, etc. As you know, we have been concerned about a number of things with Andrew, from basic socialization with other kids (whom he has not really been around) to cognitive issues from the array of drugs and treatments he has experienced. To be fair, he hasn't necessarily given us a specific reason to be concerned about anything, but we were eager, yet anxiety-ridden, to get an objective opinion of where he stood. It's not right to stake so much on a pre-school evaluation of a 3-year-old, but we really couldn't help ourselves. The good news and total relief is that, according to Mrs. Gutierrez, he is just fine and doing quite well. Except for scissors. Apparently, he sucks at scissors, but he's right on target everywhere else (well, except for potty-training, but that's a work in progress). SO, leaving aside scissor work and going potty, he is moving right along. Great, we'll take it.
We also took Andrew to the pediatric cardiologist to have his heart function checked. He had experienced various issues with his heart during the course of treatment last year, so the idea was to see where he stood now that treatment was over. The good news, again, is that his heart seems to be just fine. He posted good numbers (shortening fraction of 41, ejection fraction of 72 and no valve prolapses for all you cardiologists out there) and the doctor felt that there was nothing permanent to worry about. Again, huge relief. We are still trying to arrange for his hearing evaluation, so we will have to let you know the results of that next time.
In the meantime, we are now into the Official Real Scan Week (for real this time). In fact, we start tomorrow at 9AM with a bone marrow biopsy at City of Hope. Later this week, he will get a CT and a bone scan. This is both good news and not-so-good news. The good news is that the addition of the bone scan will give us added peace of mind that Andrew is still NED. Assuming it comes out clean. The not-so-good news is that the reason we are adding it to scan week is that Andrew has developed an awkward walk, where he turns his right leg out and limps oddly. Sometimes. And he complains that it hurts. Sometimes. Again, we are trying not to panic, as apparently this can happen post-transplant, as fluid can collect in the hip. Of course, we can't help but think about the not-so-clear MiBG scan and wonder if there is something uglier at work here. The bone scan will go a long way toward sorting all of this out for us. As always, we ask for your concerted thoughts and prayers this week as we go through these scan and await the results. We really believe there is no reason that Andrew should have any disease in him, but we also know that Neuroblastoma can be brutal that way.
That's where we are. We promise to give a prompt update as soon as we know more.
Love,
Paul & Cynthia
Tuesday, March 17, 2009
Ummm, was that 5 or 6?
Well, this is awkward.... We have a confession: Apparently, we are no good at math. This includes our oncologist (which is probably why he is an oncologist and not a mathematician). In any case, we were at City of Hope yesterday ready to start Scan Week--to the point where we had been strong-arming barium contrast down Andrew for his 6:30PM CT Scan--when we realized that we had, in essence, "gotten ahead of ourselves" and miscounted his treatment rounds. I suppose you would call us eager. In short, Andrew is to get scans after 6 rounds of Accutane, but he has only completed 5 so far.
So, the CT was canceled and instead, he started a course of Accutane yesterday, which will run for 2 weeks. Two weeks after that (mid-April), he will go through Scan Week. The real Scan Week, we promise. That said, all is not lost this week: Our doc did arrange to go ahead with the MiBG scan, which is a special scan that is specific to Neuroblastoma, this week. So, we will not end up totally empty-handed; we should have those results by Friday. But, the CT, the bone marrow biopsy and the urine and blood tests will all get bumped to next month. So sorry for the confusion. Though, you should have seen our faces when the realization hit yesterday....
Take care. We will keep you posted.
Paul
So, the CT was canceled and instead, he started a course of Accutane yesterday, which will run for 2 weeks. Two weeks after that (mid-April), he will go through Scan Week. The real Scan Week, we promise. That said, all is not lost this week: Our doc did arrange to go ahead with the MiBG scan, which is a special scan that is specific to Neuroblastoma, this week. So, we will not end up totally empty-handed; we should have those results by Friday. But, the CT, the bone marrow biopsy and the urine and blood tests will all get bumped to next month. So sorry for the confusion. Though, you should have seen our faces when the realization hit yesterday....
Take care. We will keep you posted.
Paul
Wednesday, March 11, 2009
Would you believe 4?
Where does the time go?!!?!? I guess we have been busy living. When we last left you, Andrew was being discharged from City of Hope following his final hospitalization for antibody treatment. That was a Friday. That Sunday, we lost all judgment and rational thinking and adopted a dog. See Exhibit A below.
His name is Cowboy and he came from Beagles & Buddies, which is a local rescue. He is not a full beagle, but a beagle mix, and is about a year old. Turns out, this is one of the best decisions we have ever made. Setting aside the fact that he smells, sheds, has bad breath and poos (poohs?) ALL THE TIME, he is super sweet and loads of fun. Mainly, though, the way we knew we had a winner was that Andrew was running around in the backyard playing with him 48 hours after being discharged from week-long hospital stay. Unthinkable!
Lucia has taken on the role of dog trainer and now watches episode upon episode of the Dog Whisperer, Dog Town and It's the Dog or Me on TV. To say she is obsessed would be a bit of an understatement. She is currently teaching Cowboy how to fetch and, truthfully, is doing an amazing job of it. She is also teaching him various "mind games" of questionable worth, but which she is convinced make him smarter. As she would say (tapping a finger to her temple): He has to exercise his brain, too....
Also, since we last posted, Andrew has celebrated his 4th birthday. This was a Big One. This is one that a year ago, we had no idea whether we would make it to or what it might look like. Obviously, in light of how everything has gone, it was the best birthday EVER. Evidence can be seen in Exhibits B, C & D as follows:
Need we say more.
Which is somewhat of a natural segue into the fact that we have been taking Lucia to the counselor at City of Hope to help her deal with any feelings or issues that she might have from the last year in terms of jealousy, inequality, fairness, attention, etc. It seems to be going well and hopefully we will diffuse anything before it festers and she becomes a rebellious, angry, awkward teenager. Oh wait, that will likely happen anyway....
Next up: Scan Week. This starts Monday with lab work and a full CT scan. Followed on Tuesday, Wednesday and Thursday by MiBG scans, which are specialized scans specific to Neuroblastoma. Also on Thursday, he will have a bone marrow biopsy, where the doctor punches into his hip bones to collect marrow for testing. He is sedated, of course, and (thankfully) doesn't remember this procedure. Also, now that we are post-treatment--let me say that again: NOW THAT WE ARE POST-TREATMENT--we will also re-check his heart function, kidney function and hearing. His treatment from the last year has a knack for compromising those organs, so we need to determine where we stand there. In particular, his hearing could be at risk, which then can lead to learning issues, if it's not caught and dealt with early on. As always with Scan Week, we ask you to pray for continued NED and for good, normal organ function.
We will keep you posted on results as they come in next week and the week after. Until then, please keep us in your prayers. And hope that Cowboy finds a breath mint. Thank you.
Love,
Paul & Cynthia
His name is Cowboy and he came from Beagles & Buddies, which is a local rescue. He is not a full beagle, but a beagle mix, and is about a year old. Turns out, this is one of the best decisions we have ever made. Setting aside the fact that he smells, sheds, has bad breath and poos (poohs?) ALL THE TIME, he is super sweet and loads of fun. Mainly, though, the way we knew we had a winner was that Andrew was running around in the backyard playing with him 48 hours after being discharged from week-long hospital stay. Unthinkable!
Lucia has taken on the role of dog trainer and now watches episode upon episode of the Dog Whisperer, Dog Town and It's the Dog or Me on TV. To say she is obsessed would be a bit of an understatement. She is currently teaching Cowboy how to fetch and, truthfully, is doing an amazing job of it. She is also teaching him various "mind games" of questionable worth, but which she is convinced make him smarter. As she would say (tapping a finger to her temple): He has to exercise his brain, too....
Also, since we last posted, Andrew has celebrated his 4th birthday. This was a Big One. This is one that a year ago, we had no idea whether we would make it to or what it might look like. Obviously, in light of how everything has gone, it was the best birthday EVER. Evidence can be seen in Exhibits B, C & D as follows:
Need we say more.
Which is somewhat of a natural segue into the fact that we have been taking Lucia to the counselor at City of Hope to help her deal with any feelings or issues that she might have from the last year in terms of jealousy, inequality, fairness, attention, etc. It seems to be going well and hopefully we will diffuse anything before it festers and she becomes a rebellious, angry, awkward teenager. Oh wait, that will likely happen anyway....
Next up: Scan Week. This starts Monday with lab work and a full CT scan. Followed on Tuesday, Wednesday and Thursday by MiBG scans, which are specialized scans specific to Neuroblastoma. Also on Thursday, he will have a bone marrow biopsy, where the doctor punches into his hip bones to collect marrow for testing. He is sedated, of course, and (thankfully) doesn't remember this procedure. Also, now that we are post-treatment--let me say that again: NOW THAT WE ARE POST-TREATMENT--we will also re-check his heart function, kidney function and hearing. His treatment from the last year has a knack for compromising those organs, so we need to determine where we stand there. In particular, his hearing could be at risk, which then can lead to learning issues, if it's not caught and dealt with early on. As always with Scan Week, we ask you to pray for continued NED and for good, normal organ function.
We will keep you posted on results as they come in next week and the week after. Until then, please keep us in your prayers. And hope that Cowboy finds a breath mint. Thank you.
Love,
Paul & Cynthia
Thursday, February 12, 2009
And...Done!
Need we say more?
Antibody is finished, the temporary line in his groin has been taken out and he will be heading home tomorrow.
Now things get interesting....
Antibody is finished, the temporary line in his groin has been taken out and he will be heading home tomorrow.
Now things get interesting....
Wednesday, February 11, 2009
Fortune Cookie Says...
Well, we're certainly on the same page now.... I am at the hospital this week with Andrew and have been meaning to write. I signed on to post just now and, lo and behold, Cynthia had just made her post. That must be teamwork. I will try not to be redundant.
Before I continue, I do have to say that I have received all of your notes, cards, messages, posts, etc. expressing your sympathy, support and love over the passing of my dad. I am grateful for all of them and sincerely thank you. It goes without saying that this is an incredibly difficult and bittersweet time for me--for us--and I appreciate you thinking of me. Like Cynthia, I have not been here to post for the last few weeks, because it was simply too hard to come here. Never would I have thought that a blog to write about my sick son would turn into a place to post my dad's (premature) obituary. I am posting tonight, because you deserve an update on Andrew and because we are at such a pivotal and optimistic time. I do feel like I will eventually post here about my dad, but it is all a bit too raw and unprocessed at the moment.
Cynthia already gave a rundown of the week and how Andrew has been handling everything: It has been pretty manageable, he has been in overall good spirits, and the bottom line is that we are now one day away from completing treatment. Well, at least hospital-bound treatment. As Cynthia mentioned, Andrew will have oral meds at home for at least another six months, but that seems strangely light and easy compared to what we have been through. We have been at this for over a year now and we are exhausted, yet looking ahead to what next week looks like and the week after that and the week after that, it's hard not to get excited at all the UNINTERRUPTED living we will actually be doing: We will all be sleeping under one roof together next week and the week after and the week after; Andrew will be able to string together whole weeks of school, followed by more whole weeks of school; we will be able to plan family outings and trips on the weekends; we will stop dragging out and delaying getting a family pet; Lucia will stop feeling left out and isolated by her brother's illness and care....
In other words, we are about to embark on life "post-cancer." Of course, as we are reminded constantly, Neuroblastoma is a nasty, angry, bitter cancer and it likes to come back--typically within two years. So, we are not naive. We are not ignorant. We will be living, but it will be impossible not to have one eye looking back over our shoulder, watching, waiting, wondering if there is a relapse in store for Andrew and for us. We are excited for life now and we are cautiously optimistic, but we respect this disease enough to carry a deep sense of dread as we tip-toe through the coming weeks, then months, then (touch wood) years.
I have to close with this: On Monday, Uncle Vince and Uncle Dave brought Andrew his favorite hospital dinner--Chinese noodles with soy sauce and lots and lots of fortune cookies. Andrew loves to eat fortune cookies and when he does, he asks me to read the fortunes to him. Of course, he never understands them and then always asks me to explain them. Well, he got one that needed no explanation: You will live a long, prosperous life. Not to pin too much hope on a fortune cookie, but the unfortunate thing was that he ripped it taking it out of the cookie, which--being oddly superstitious at times--I took as a pretty bad sign. Well, he asked for another fortune cookie today at lunch time, opened it up and handed it to me to read to him. And you know what? He got it again: You will live a long, prosperous life. No rip. It's hard not to buy into that....
Love,
Paul
Before I continue, I do have to say that I have received all of your notes, cards, messages, posts, etc. expressing your sympathy, support and love over the passing of my dad. I am grateful for all of them and sincerely thank you. It goes without saying that this is an incredibly difficult and bittersweet time for me--for us--and I appreciate you thinking of me. Like Cynthia, I have not been here to post for the last few weeks, because it was simply too hard to come here. Never would I have thought that a blog to write about my sick son would turn into a place to post my dad's (premature) obituary. I am posting tonight, because you deserve an update on Andrew and because we are at such a pivotal and optimistic time. I do feel like I will eventually post here about my dad, but it is all a bit too raw and unprocessed at the moment.
Cynthia already gave a rundown of the week and how Andrew has been handling everything: It has been pretty manageable, he has been in overall good spirits, and the bottom line is that we are now one day away from completing treatment. Well, at least hospital-bound treatment. As Cynthia mentioned, Andrew will have oral meds at home for at least another six months, but that seems strangely light and easy compared to what we have been through. We have been at this for over a year now and we are exhausted, yet looking ahead to what next week looks like and the week after that and the week after that, it's hard not to get excited at all the UNINTERRUPTED living we will actually be doing: We will all be sleeping under one roof together next week and the week after and the week after; Andrew will be able to string together whole weeks of school, followed by more whole weeks of school; we will be able to plan family outings and trips on the weekends; we will stop dragging out and delaying getting a family pet; Lucia will stop feeling left out and isolated by her brother's illness and care....
In other words, we are about to embark on life "post-cancer." Of course, as we are reminded constantly, Neuroblastoma is a nasty, angry, bitter cancer and it likes to come back--typically within two years. So, we are not naive. We are not ignorant. We will be living, but it will be impossible not to have one eye looking back over our shoulder, watching, waiting, wondering if there is a relapse in store for Andrew and for us. We are excited for life now and we are cautiously optimistic, but we respect this disease enough to carry a deep sense of dread as we tip-toe through the coming weeks, then months, then (touch wood) years.
I have to close with this: On Monday, Uncle Vince and Uncle Dave brought Andrew his favorite hospital dinner--Chinese noodles with soy sauce and lots and lots of fortune cookies. Andrew loves to eat fortune cookies and when he does, he asks me to read the fortunes to him. Of course, he never understands them and then always asks me to explain them. Well, he got one that needed no explanation: You will live a long, prosperous life. Not to pin too much hope on a fortune cookie, but the unfortunate thing was that he ripped it taking it out of the cookie, which--being oddly superstitious at times--I took as a pretty bad sign. Well, he asked for another fortune cookie today at lunch time, opened it up and handed it to me to read to him. And you know what? He got it again: You will live a long, prosperous life. No rip. It's hard not to buy into that....
Love,
Paul
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