Nathan: Daddy, what day is it?
Me: Friday.
Nathan: That means no chemo tomorrow! Julia! I have no chemo tomorrow!
6.23.2006
6.22.2006
Guilt
Over the last few weeks, it seems to me, Nathan's behavior has been changing. I don't think this has to do with the cancer. It was happening before the relapse, but may be accelerated (or seem that way to me) because of it. Nathan has always been a quiet, calm, respectful boy with a lot of self-control. Quite honestly, he had these traits up to the point of not being a normal acting child of his age. Well, lately he has taken to random wild outbursts of noise, having an inability to remember or act on direction, showing defiance and testing control boundaries, and etc. When I think about it, I think it is probably quite good and natural and nothing more than the normal challenges a kid of his age provide parents. The problem for me right now is that I have such issues about trying to control whatever I can in my life (including my kids' behavior) and my stress levels are, oh, just a bit high, that I'm having a hard time dealing with it. I yelled at him pretty good last evening. He was doing something for the umpteen time that I had told him not to and it just pissed me off good. Now, I think kids need yelled at sometimes. I think it should be rare though. I don't practice what I preach on this, although I try. Really I do. I feel guilty enough when I yell at any of my kids over something I know that I shouldn't be yelling about, but with Nathan that guilt is amplified. What kind of parent yells at his kid that is dealing with the fact that his cancer has returned and has just had chemo the last three days for being overly enthusiastically loving towards his 7 month old sister?
I have had some real problems with stress and lack of patience interfering with my ability to do the one thing that is most important to me, especially now. That one thing is to enjoy the time I have with my family and to be as good a husband and father as I can. I've got to get a better handle on this because things are just going to get worse.
Sorry, no comments. Even though you mean well and there may be some truth to it, this is one of those times I don't want to hear anyone pat me on the back. Yes, I'm doing the best I can. Sometimes, sadly, my best isn't good enough. Now I just have to find the trick to improving on my best.
I have had some real problems with stress and lack of patience interfering with my ability to do the one thing that is most important to me, especially now. That one thing is to enjoy the time I have with my family and to be as good a husband and father as I can. I've got to get a better handle on this because things are just going to get worse.
Sorry, no comments. Even though you mean well and there may be some truth to it, this is one of those times I don't want to hear anyone pat me on the back. Yes, I'm doing the best I can. Sometimes, sadly, my best isn't good enough. Now I just have to find the trick to improving on my best.
6.21.2006
Sprinkler Jump
Well, I've been suspiciously quiet over here...especially given the recent relapse. I've drafted a few things and then deleted them before publishing. It isn't that I don't want to share here, it is that I just haven't been able to formulate anything that seems to me to capture what I'm really thinking/feeling.
I don't mean to diminish the impacts of chemo here. Some chemos are tolerated well. Some are rougher than others. Some take some time to hit. No matter how hard or not hard chemo hits a body, it all sucks because of the mental and emotional impact of *why* the chemo is being given. The nurses say this cycle that Nathan is on will start to hit him in the next couple of days in terms of feeling bad. I'm sure it would have kicked my ass already.
Here is a picture of a 6 year old boy on day 2 of a 5 day cycle of chemo jumping through the sprinklers. He is coping well. He is bummed and emotional and probably a bit scared although he hasn't really talked about that aspect. He does still carve out some space for fun, and last night it was in the sprinklers...at least until we told him it was time to come in for his bath and bed and he melted down.
I don't mean to diminish the impacts of chemo here. Some chemos are tolerated well. Some are rougher than others. Some take some time to hit. No matter how hard or not hard chemo hits a body, it all sucks because of the mental and emotional impact of *why* the chemo is being given. The nurses say this cycle that Nathan is on will start to hit him in the next couple of days in terms of feeling bad. I'm sure it would have kicked my ass already.
Here is a picture of a 6 year old boy on day 2 of a 5 day cycle of chemo jumping through the sprinklers. He is coping well. He is bummed and emotional and probably a bit scared although he hasn't really talked about that aspect. He does still carve out some space for fun, and last night it was in the sprinklers...at least until we told him it was time to come in for his bath and bed and he melted down.
6.15.2006
Kids understand
(This was originally attempted to be posted on June 15, before we received our bad news about Nathan's bone marrow relapse, but I had trouble getting the post to publish that day.)
Nathan turns 6 tomorrow and has been fighting cancer for over 3 years. We have never had the conversation with him or Julia (4) that cancer could cause him to die. They have asked the normal age-appropriate questions about death. We have explained simple things like some people die in accidents, and that some people die because of serious illness. We have explained that, yes, sometimes children die. They know, obviously, that Nathan has cancer and that it is a serious illness/disease. They know that illness can cause people to die. And they know that sometimes children die. They are smart enough to put it together and have been for some time. They have never taken it to the next step though and asked whether or not Nathan might die because of his cancer. So far our philosophy has been to let them dictate what they were really ready to learn and understand based on their questions. I suppose at some point this approach may have to change. First and foremost, I think they know now. If they don't, they are purposefully not letting themselves make the connection. The other big thing is that I'm now afraid what they may hear and learn from other kids now that they are in school and involved in other venues around large numbers of other children.
On the way to the airport to pick up her big brother after he just got scanned to check for relapse, Julia said to me out of the blue, "Sometimes kids die". I asked her why she was thinking about that. She said she didn't know. I just think that she didn't really want to acknowledge the reason. Later on in the drive she said to me, "Daddy, I love you. I'll love you forever. Even after you die."
Heavy times in the Gentry household.
Nathan turns 6 tomorrow and has been fighting cancer for over 3 years. We have never had the conversation with him or Julia (4) that cancer could cause him to die. They have asked the normal age-appropriate questions about death. We have explained simple things like some people die in accidents, and that some people die because of serious illness. We have explained that, yes, sometimes children die. They know, obviously, that Nathan has cancer and that it is a serious illness/disease. They know that illness can cause people to die. And they know that sometimes children die. They are smart enough to put it together and have been for some time. They have never taken it to the next step though and asked whether or not Nathan might die because of his cancer. So far our philosophy has been to let them dictate what they were really ready to learn and understand based on their questions. I suppose at some point this approach may have to change. First and foremost, I think they know now. If they don't, they are purposefully not letting themselves make the connection. The other big thing is that I'm now afraid what they may hear and learn from other kids now that they are in school and involved in other venues around large numbers of other children.
On the way to the airport to pick up her big brother after he just got scanned to check for relapse, Julia said to me out of the blue, "Sometimes kids die". I asked her why she was thinking about that. She said she didn't know. I just think that she didn't really want to acknowledge the reason. Later on in the drive she said to me, "Daddy, I love you. I'll love you forever. Even after you die."
Heavy times in the Gentry household.
6.14.2006
Nausea
I'm not sick, at least not with a stomach bug, but I can't shake this feeling that I need to throw up. We may not even hear any results today. So it may linger. I won't be surprised if the results are bad, but that doesn't make me prepared. And it doesn't make the waiting any easier.
6.11.2006
Scan Week
Ugh. Scan week is here. Susan, Nathan, and Lauren are at a hotel near the airport tonight and headed off for New York at the crack of dawn. Julia and I will hold down the fort here. I feel different about this scan week than any others. I feel almost numb about it. The stress and the general hell of it all is there, but it is somewhat muted. Each time we have to do this it is different. Sometimes I feel doom and gloom and expect bad news. Sometimes I have good feelings and expect good results. This time, going along with the numbness, I'm not leaning either way. I wouldn't be surprised if the tests show another relapse. I wouldn't be surprised if the tests are stable.
I've been contemplating posting about scans for the last couple of weeks. I've decided that I can't adequately describe what it is like. I'm not sure those who don't go through this want to know what it is like. I'm sure your imagination can do better on this one than my words ever could. Every time we do this I'm reminded that I fail to live each and every day to its fullest and to savor and enjoy my time with my family as much as I should.
So...scans are on Tuesday and Wednesday. Results will start trickling in. Send Nathan your best prayers, thoughts, vibes, mojo, etc.
I've been contemplating posting about scans for the last couple of weeks. I've decided that I can't adequately describe what it is like. I'm not sure those who don't go through this want to know what it is like. I'm sure your imagination can do better on this one than my words ever could. Every time we do this I'm reminded that I fail to live each and every day to its fullest and to savor and enjoy my time with my family as much as I should.
So...scans are on Tuesday and Wednesday. Results will start trickling in. Send Nathan your best prayers, thoughts, vibes, mojo, etc.
6.06.2006
Dropping the Bomb
It seems one of those great facts of life (at least from the oh so experienced and aged near 33 year old perspective) that there is a constant stream of people entering your life. The flip side is that many of those people exit your life too. Sometimes that is just fine. Other times it is a really rather sad thing. There are several people that I have lost touch with that I'm a bit bummed I don't know what is going on in their lives. There are some people that it makes me sad that I don't really know them or know them well anymore. And there are a handful of people that I have serious regrets about having let slip out of touch. I find the last category very hard to re-engage with. The emotional hurdle is great. The internet makes finding people you have lost pretty easy in a lot of cases and I think that is awesome. My experiences and satisfaction with reaching out to old friends or acquaintances is a mixed bag. I have had pleasant exchanges where it is clear I will lose touch with the party again and indefinitely. I have re-engaged with people to the point that I exchange emails with them now periodically. I really like touching base with people from the past. It is an interesting view on how much I have changed and I really have known a lot of genuinely interesting people over the years and generally they are still fun and interesting when I check back in on them.
So the tie-in for Cancer Dad is that having a seriously ill child complicates this process a bit. Sometimes these exchanges can be a bit daunting anyway. "Hi, remember me? We fell out of touch, probably for a reason, but I thought that out of the blue I might drop you an email, tell you a bit about what I've been doing for the last decade, and hope that you might do the same in return." Most of the time the reception is really positive and friendly, but it is still a bit uncomfortable at times. So the fact that I have a kid with cancer is quite understandably a huge part of my life. Now change the above to, ""Hi, remember me? We fell out of touch, probably for a reason, but I thought that out of the blue I might drop you an email and tell you a bit about what I've been doing for the last decade. I got a job, got married, had kids, live in Colorado, and have a kid with a rare and deadly form of cancer. How have you been?" It isn't like I do this a lot, but every six months to a year or so I probably get the itch to touch base with someone. I take the approach of sending a short email hitting the highlights (mostly being married to a wonderful woman and having three incredible kids) on my goings on and leaving out the lowlights. Typically I get a very positive and detailed response in return. I just got one last week. It went something like, "I'm so happy that you have such a wonderful and happy family". Well, now I feel a bit like I lied through omission. I've been through this once before where I followed this formula. At just about this time I dropped the bomb and sent the, "Well, yes, I am happy that I have a wonderful family but I feel a bit odd about having omitted this one little detail...". I never heard back from that guy.
So here is the deal. I really don't care for the most part if the people I'm reaching out to can't or don't want to handle the fact that I have a seriously ill child. I would care if these were the people that I seriously regretted having lost contact with, but I can't work up whatever it is I need to reach out to them anyway. Some of these people were good friends though and I don't feel genuine having any type of relationship with them, even if it is a somewhat superficial email-based relationship, and leaving out something so fundamental and important to my life and who I am. I also don't want to appear like I'm trolling for sympathy or attention.
So, I guess I'll reach out to old lost friends periodically and just have to drop the bomb and see what happens.
So the tie-in for Cancer Dad is that having a seriously ill child complicates this process a bit. Sometimes these exchanges can be a bit daunting anyway. "Hi, remember me? We fell out of touch, probably for a reason, but I thought that out of the blue I might drop you an email, tell you a bit about what I've been doing for the last decade, and hope that you might do the same in return." Most of the time the reception is really positive and friendly, but it is still a bit uncomfortable at times. So the fact that I have a kid with cancer is quite understandably a huge part of my life. Now change the above to, ""Hi, remember me? We fell out of touch, probably for a reason, but I thought that out of the blue I might drop you an email and tell you a bit about what I've been doing for the last decade. I got a job, got married, had kids, live in Colorado, and have a kid with a rare and deadly form of cancer. How have you been?" It isn't like I do this a lot, but every six months to a year or so I probably get the itch to touch base with someone. I take the approach of sending a short email hitting the highlights (mostly being married to a wonderful woman and having three incredible kids) on my goings on and leaving out the lowlights. Typically I get a very positive and detailed response in return. I just got one last week. It went something like, "I'm so happy that you have such a wonderful and happy family". Well, now I feel a bit like I lied through omission. I've been through this once before where I followed this formula. At just about this time I dropped the bomb and sent the, "Well, yes, I am happy that I have a wonderful family but I feel a bit odd about having omitted this one little detail...". I never heard back from that guy.
So here is the deal. I really don't care for the most part if the people I'm reaching out to can't or don't want to handle the fact that I have a seriously ill child. I would care if these were the people that I seriously regretted having lost contact with, but I can't work up whatever it is I need to reach out to them anyway. Some of these people were good friends though and I don't feel genuine having any type of relationship with them, even if it is a somewhat superficial email-based relationship, and leaving out something so fundamental and important to my life and who I am. I also don't want to appear like I'm trolling for sympathy or attention.
So, I guess I'll reach out to old lost friends periodically and just have to drop the bomb and see what happens.
4.25.2006
Money, Money, Money
I'm once again lurking on a support listserv related to neuroblastoma at The Association of Cancer Online Resources (ACOR). There has been a recent flurry of emails about fund-raising for pediatric cancer research. I'm not quite prepared to go into my conflicted and complex views of how money should be distributed by the government or large, national non-profit organizations like the American Cancer Society. I'm personally struggling on that front with how to balance my own emotional closeness to the topic versus the logistics of how to distribute money given disease mortality, frequency of occurrence, age at which disease typical emerges, and etc.
What has become obvious to me though is that given how money is currently distributed for research for various cancers, the rarity of pediatric cancers and perception that pediatric-cancer=leukemia=treatable puts pediatric cancer funding pretty low on the totem pole. If the big, national organizations aren't cutting it, who is leading the charge for raising money for kids with cancer? Quite clearly it is parents of kids with cancer or parents that have lost children to one of these monstrous diseases. I have not had the strength to be part of the lead in this charge. I'm not sure I ever will. I have much respect for those who find it. In some cases I'm sure it is a form of self-therapy, but it is more than that as well. It is a burden. A huge burden. The burden on parents with children sick with any serious or chronic illness is terrible, and to throw in the burden of legitimately (at least in my estimation) feeling like it is not only your responsibility to fight to get your own kid better but that you have to be fighting to find a cure for all the kids is really just insane. This is how it works though. I guess it is just one of those harsh realities. The people out there fighting for funding and for a cure are those that have been "touched" (or punched or however you want to look at it). I wish this would change, but I doubt it will. These poor kids and families have it all stacked against them. If the burden falls on those that have been stricken with this, and getting stricken with this is "rare" in comparison to adult cancers, then the progress is inevitably going to be slow. A lot of these incredible kids and families don't have time for slow and steady progress.
Kudos to those families and friends of sick kids that get out there and fight so hard to make a real difference.
What has become obvious to me though is that given how money is currently distributed for research for various cancers, the rarity of pediatric cancers and perception that pediatric-cancer=leukemia=treatable puts pediatric cancer funding pretty low on the totem pole. If the big, national organizations aren't cutting it, who is leading the charge for raising money for kids with cancer? Quite clearly it is parents of kids with cancer or parents that have lost children to one of these monstrous diseases. I have not had the strength to be part of the lead in this charge. I'm not sure I ever will. I have much respect for those who find it. In some cases I'm sure it is a form of self-therapy, but it is more than that as well. It is a burden. A huge burden. The burden on parents with children sick with any serious or chronic illness is terrible, and to throw in the burden of legitimately (at least in my estimation) feeling like it is not only your responsibility to fight to get your own kid better but that you have to be fighting to find a cure for all the kids is really just insane. This is how it works though. I guess it is just one of those harsh realities. The people out there fighting for funding and for a cure are those that have been "touched" (or punched or however you want to look at it). I wish this would change, but I doubt it will. These poor kids and families have it all stacked against them. If the burden falls on those that have been stricken with this, and getting stricken with this is "rare" in comparison to adult cancers, then the progress is inevitably going to be slow. A lot of these incredible kids and families don't have time for slow and steady progress.
Kudos to those families and friends of sick kids that get out there and fight so hard to make a real difference.
4.19.2006
A Lion in the House
Google allows you to subscribe through an RSS or Atom feed to searches of news sources. I subscribe to several different search criteria associated with neuroblastoma or childhood/pediatric cancer. I was surprised to see an article about the Nashville Film Festival pop up in one of my feeds. It seemed even stranger when the small blurb I was presented looked like this.
Links
itvs
PBS
Interview with the filmakers
Current.org
Nashville Scene, USA -Further review of the article revealed this blurb about a documentary about pediatric cancer. I'm not sure where I've been hiding, but I really knew nothing about this film.1 hour ago
... That Hungarian stoner comedy or four-hour pediatric-cancer documentary will be something ... journeys too are a sort of crossing over, from childhood into adulthood ...
A LION IN THE HOUSE (1:15 p.m.) Simply put, Steven Bognar and Julia Reichert’s devastating documentary is one of the two or three best movies in the entire festival, perhaps even this year—although its unflinching portrait of children fighting cancer over a six-year period in the Cincinnati Children’s Hospital is something any parent will dread. Themselves parents of a cancer survivor, the filmmakers document an agonizing cycle of fragile hopes, new treatments, temporary remissions and terrifying relapses: parents age and children wither over the course of the film’s gripping four hours. And yet the overall impact is cathartic rather than depressing, in keeping with the Isak Dinesen quote that provides the film’s title—which says that you don’t know what it’s like to be alive until you’ve lived with lions. Kudos to the filmmakers and to the unimaginably brave kids and parents who gave them permission to film—some of whom will reportedly attend the screening. —J.R.I tend to think that I do not want to see this film. I suppose I'll be torn on it. On one hand I'm very curious about how the lives of cancer families are portrayed in such a "devastating documentary". On the other hand, my family lives the life and devastation of pediatric cancer. I don't really need a four-hour on-screen dose of it. I'm pleased that this subject is getting this type of attention and I really hope that it is done and received well. We'll see if I ever work up the desire to make a judgement on that myself.
Links
itvs
PBS
Interview with the filmakers
Current.org
4.13.2006
Too Funny
I'm playing with tagging for Technorati. I tagged my last post with "pediatric cancer" and followed the link to see what Tecnhorati came back with. I got a real chuckle out of one of the tag-targeted ads that was presented. If I didn't already have me some pediatric cancer in the family, I might just be tempted by these "bargain prices".
- Bargain Prices Shop fast, Buy smart, Shopzilla for Pediatric Cancer at over 50,000 online stores. Every product from every store means you get a Bargain Price. Don't just shop, Shopzilla. www.shopzilla.com
Cancer Registry Data Made Public
A Carbondale, Illinois newspaper, The Southern Illinoisan, engaged in an eight-plus year court battle to obtain cancer registry data related to neuroblastoma cases in areas in Southern Illinois. I have only looked into this briefly but it appears that after the families of four neuroblastoma children from Taylorville, Illinois were awarded a multi-million dollar settlement in civil suit in 1998. That suit apparently claimed that the NB cases were caused by a coal tar cleanup at in 1988. I couldn't find very much information on that case in a very quick search except for references to that case in news stories about the release of registry data. A reference does get made to the case, with no real detail, in Taylorville's Wikipedia entry. The recrods released were limited for a period of 1986 to 1997 and the newspaper is apparently now going after current data from the registry.
I'm a little torn on this. I'm okay with the thought that cancer can occur because of environmental factors but that it can also occur randomly. If there is data to suggest that environmental factors related to the types of activities that occured in Taylorville (5 cases listed in a town with a total population of 11,427 as of the 2000 census. By comparison, Chicago area zip codes accounted for 87 cases during the timespan the newspaper originally requested) can cause neuroblastoma, then the general public should be made aware, or at the very least scientists and health officials should looking closer at these possible connections. My son is on the registry and I'm a bit embarrased to admit that I don't know too much about its purpose, although I always assumed that it had something to do with acquiring large enough samples of tumor tissue and etc for laboratory testing and trials and also to be able to statistically analyze trend based on various factors such as location, family heatlh history, etc. Shouldn't our public health system be doing this type of analysis? Are they? Why does a newspaper feel that they need access to the information to do this research? Are they in it for the sensational story alone? Or is there real evidence that our public health systems don't use the registry to perform this type of analysis? I guess I need to do some more research of my own.
The State resisted making the records public. I have worked for various state agencies as a consultant and while in my experiences they generally want to make information available to the public, there is also this wariness of the "slippery slope". They fear if it is too easy then they will (a) get overburdened by responding to information requests and (2) that they may lose the ability to keep some information from the public based on their "professional judgement" or the privacy of their customers. The articles I read this morning seem to suggest that the biggest argument against giving up the information is patient privacy. Patient privacy is a serious issue and it is probably a bigger issue for adults on the registry than for kids. I'm sure that there are some families that keep their children's health information very close and private, but in my experience with other neuroblastoma families, it is pretty easy to find at the very least basic information about the kids and their health. Nathan's name, where he lives, the basics about his treatment, and a bunch of other information could probably be found just by pulling information from various web-based tools we have used to keep friends and family members informed about his condition. If these papers wanted to work hard enough they could likely find the bulk of the NB kids in a given area, especially in smaller communities like those found in Southern Illinois. Given the registry data, it will be very easy for them to find out the names and other information of those on the registry. This really doesn't bother me too much as a parent with a child on the cancer registry. Anyone could pretty easily find Nathan if they were looking for neuroblastoma kids in our area. As an adult on the registry, I might be much more concerned about my privacy. Nathan as an adult might be much more concerned about his privacy than we are now.
I thought I would have a stronger opinion about all of this by the time I wrote out my thoughts, but I don't. I'm very interested in the possibility of clusters. I believe that they can exist, but I personally doubt that neuroblastoma cases will ever found to be primarily in these "clusters". I'm also interested in the privacy concerns over making cancer registry data public. I think that independend researchers have probably often been better and more efficient than public resources at evaluating data and trends and that there could be real value to allowing this information out in some form or other. I think we need to be very careful of the privacy of the people on the registry though, even though I'm not terribly concerned about that from my own family's standpoint.
(Special thanks to my legal expert, Jim B., for tracking down the link to the supreme court case.)
Technorati Tags: cancer, neuroblastoma, childhood cancer, pediatric cancer
I'm a little torn on this. I'm okay with the thought that cancer can occur because of environmental factors but that it can also occur randomly. If there is data to suggest that environmental factors related to the types of activities that occured in Taylorville (5 cases listed in a town with a total population of 11,427 as of the 2000 census. By comparison, Chicago area zip codes accounted for 87 cases during the timespan the newspaper originally requested) can cause neuroblastoma, then the general public should be made aware, or at the very least scientists and health officials should looking closer at these possible connections. My son is on the registry and I'm a bit embarrased to admit that I don't know too much about its purpose, although I always assumed that it had something to do with acquiring large enough samples of tumor tissue and etc for laboratory testing and trials and also to be able to statistically analyze trend based on various factors such as location, family heatlh history, etc. Shouldn't our public health system be doing this type of analysis? Are they? Why does a newspaper feel that they need access to the information to do this research? Are they in it for the sensational story alone? Or is there real evidence that our public health systems don't use the registry to perform this type of analysis? I guess I need to do some more research of my own.
The State resisted making the records public. I have worked for various state agencies as a consultant and while in my experiences they generally want to make information available to the public, there is also this wariness of the "slippery slope". They fear if it is too easy then they will (a) get overburdened by responding to information requests and (2) that they may lose the ability to keep some information from the public based on their "professional judgement" or the privacy of their customers. The articles I read this morning seem to suggest that the biggest argument against giving up the information is patient privacy. Patient privacy is a serious issue and it is probably a bigger issue for adults on the registry than for kids. I'm sure that there are some families that keep their children's health information very close and private, but in my experience with other neuroblastoma families, it is pretty easy to find at the very least basic information about the kids and their health. Nathan's name, where he lives, the basics about his treatment, and a bunch of other information could probably be found just by pulling information from various web-based tools we have used to keep friends and family members informed about his condition. If these papers wanted to work hard enough they could likely find the bulk of the NB kids in a given area, especially in smaller communities like those found in Southern Illinois. Given the registry data, it will be very easy for them to find out the names and other information of those on the registry. This really doesn't bother me too much as a parent with a child on the cancer registry. Anyone could pretty easily find Nathan if they were looking for neuroblastoma kids in our area. As an adult on the registry, I might be much more concerned about my privacy. Nathan as an adult might be much more concerned about his privacy than we are now.
I thought I would have a stronger opinion about all of this by the time I wrote out my thoughts, but I don't. I'm very interested in the possibility of clusters. I believe that they can exist, but I personally doubt that neuroblastoma cases will ever found to be primarily in these "clusters". I'm also interested in the privacy concerns over making cancer registry data public. I think that independend researchers have probably often been better and more efficient than public resources at evaluating data and trends and that there could be real value to allowing this information out in some form or other. I think we need to be very careful of the privacy of the people on the registry though, even though I'm not terribly concerned about that from my own family's standpoint.
(Special thanks to my legal expert, Jim B., for tracking down the link to the supreme court case.)
Technorati Tags: cancer, neuroblastoma, childhood cancer, pediatric cancer
4.10.2006
Fear and Trembling in Colorado Springs
Part of the life of any parent is irrational fear and over-reaction in regard to your children's well-being. If you are a parent, you know what I mean and of course there are obviously varying degrees of this for everyone. If you are a cancer parent, you know that this reaction is amplified by roughly 1000 times for your non-cancer kids and 10,000 for your cancer kid. In an otherwise good but draining weekend there were a few moments of awful fear thrown in. Nathan has had a bit of a cold, or his allergies (which have been off the hook since he started chemotherapy in 2003) have been in hyperdrive. His nose has been even more of a fount of snot and he has had a cough. We handle this well. We know his sinuses are perpetually full (after all, we do CT his head every three months) and this is pretty much normal for him. On the way home from church though he started to panic because "his head hurt" and his "stomach and something else hurt". What else hurt? I asked and he couldn't explain but pointed to his throat. So I asked if his throat hurt and he said no. He often complains about his throat before he has problems with vomiting so I asked about that and he said he didn't need to throw up. He also got all red and was complaining about being hot. I cooled the van down and he calmed down eventually and then just sat and rested on the couch all afternoon and didn't really complain any more. Now I know that he is feeling crummy and that his sinuses are full and he likely just got a normal headache. But I was terrified at the time that it was much worse. It doesn't help that he has a similar emotional response to mine. If he knows it is coming, he can handle pain orders of magnitude beyond which I have ever experienced. If he is surprised by it, he just breaks down and I can understand why he would react that way. This morning Susan said he was limping after he got off the couch. Ugh. Limping is a big one for us. That was one of his major symptoms at diagnosis. I'm pretty sure his leg fell asleep on him, and that is how he explained it to me. He was laughing about it later in the morning, so I'm pretty sure that is what happened or else he would have been concerned himself.
So I'll try and shake my fear, but I'm sure it will come back in brief waves until we get a couple of "normal" days in a row out of him.
So I'll try and shake my fear, but I'm sure it will come back in brief waves until we get a couple of "normal" days in a row out of him.
4.06.2006
Borrowed Words
"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell."
-Lance Armstrong
(I like this post title because it is self-referential in that I have borrowed the title from my brother.)
-Lance Armstrong
(I like this post title because it is self-referential in that I have borrowed the title from my brother.)
4.01.2006
April Fools
Three years ago today Nathan was in too much pain to walk and was diagnosed with neuroblastoma. I'm so very happy that I could snap this picture of him pulling his sister in a wagon today.
3.29.2006
What are you really angry about?
Today I feel consumed by anger. If you bumped into me on the street and we chatted, you wouldn't know. If you knew me well, you might clue in that something was a bit off. Of course if you have been around me much in the last three years you might not think anything was off at all.
I'm not "mad" right now. I do get mad. When I do I'm often just letting out my anger. I get mad at my kids. Sometimes I get mad at Susan. I get mad at the dog. I get mad at idiot drivers. No. As I write this now I'm not mad. I'm angry. And angry is something much deeper and more insidious. Mad is an outburst. Angry is an emotional state I can't shake.
If I can't shake this anger, why write about it now? Saturday will mark the third anniversary of Nathan's diagnosis. April fools! That is why. I see that date coming on the calendar. It isn't circled in red. I don't have a reminder set on that date in Outlook. It might as well be and I might as well have. It just pops. And each time it pops I chase the same train of thoughts and emotions. It goes something like this...I should be happy. I should be able to celebrate it. After all, three years is a long time for this diagnosis. After all, the 5 year mortality rate is approximately 30%. This is where things start to turn in this chain of thought. Three years? That is kind of pushing five years. The chances of making five years are bad.
Then I do the fucking math (it isn't hard). The math I'm doing doesn't logically apply to Nathan, but I still do the math. I get mad when I chase these thoughts around and my anger gets fueled.
I could go on and on about what I get mad about. I could give you a laundry list of the things that spark my anger. That is what it is like too. It is very much like static electricity. I walk around all day and my anger kicks around building up energy and it has to find that point where it can jump to something else.
I spark and get mad, but what am I really angry about? Is it obvious? The cause is clearly obvious, but I'm not angry that Nathan is sick. I'm angry that life is what it is, and that seems to be a hard thing to get over. At least for me. Susan and I were living outside of the reality of life. We met young. We were happy. We picked a place to live that we liked a lot. We had good jobs and made good money. We bought a house. We got a dog. We started a family. I wouldn't have thought I was naive. I knew that the nature of life was messy, but I guess I didn't expect it to be messy for me. April Fools Day came and it wasn't funny. And all of a sudden life was what it is, messy and hard and a struggle every day. So if I had to boil it all down, I'm angry because my life doesn't match up with some ideal or expectation of life that I didn't even really acknowledge that I had. I'm angry that the reality of my life doesn't match the fantasy that I was living out and expecting to continue.
Now I could be delusional in my little pop-self-psychology analysis here. I think I'm at least on the right track. And I'm so damn mad at myself for being able to recognize at least some of the reality of it all but still unable to deal with it as well as I would like and feel that I should.
Life is messy. Get over it. Give up the fantasy. Embrace the beautiful parts of reality. Love is real and beautiful. Love cannot be fantasy. Accept the love. And give it back. Revel in it.
I'm not "mad" right now. I do get mad. When I do I'm often just letting out my anger. I get mad at my kids. Sometimes I get mad at Susan. I get mad at the dog. I get mad at idiot drivers. No. As I write this now I'm not mad. I'm angry. And angry is something much deeper and more insidious. Mad is an outburst. Angry is an emotional state I can't shake.
If I can't shake this anger, why write about it now? Saturday will mark the third anniversary of Nathan's diagnosis. April fools! That is why. I see that date coming on the calendar. It isn't circled in red. I don't have a reminder set on that date in Outlook. It might as well be and I might as well have. It just pops. And each time it pops I chase the same train of thoughts and emotions. It goes something like this...I should be happy. I should be able to celebrate it. After all, three years is a long time for this diagnosis. After all, the 5 year mortality rate is approximately 30%. This is where things start to turn in this chain of thought. Three years? That is kind of pushing five years. The chances of making five years are bad.
Then I do the fucking math (it isn't hard). The math I'm doing doesn't logically apply to Nathan, but I still do the math. I get mad when I chase these thoughts around and my anger gets fueled.
I could go on and on about what I get mad about. I could give you a laundry list of the things that spark my anger. That is what it is like too. It is very much like static electricity. I walk around all day and my anger kicks around building up energy and it has to find that point where it can jump to something else.
I spark and get mad, but what am I really angry about? Is it obvious? The cause is clearly obvious, but I'm not angry that Nathan is sick. I'm angry that life is what it is, and that seems to be a hard thing to get over. At least for me. Susan and I were living outside of the reality of life. We met young. We were happy. We picked a place to live that we liked a lot. We had good jobs and made good money. We bought a house. We got a dog. We started a family. I wouldn't have thought I was naive. I knew that the nature of life was messy, but I guess I didn't expect it to be messy for me. April Fools Day came and it wasn't funny. And all of a sudden life was what it is, messy and hard and a struggle every day. So if I had to boil it all down, I'm angry because my life doesn't match up with some ideal or expectation of life that I didn't even really acknowledge that I had. I'm angry that the reality of my life doesn't match the fantasy that I was living out and expecting to continue.
Now I could be delusional in my little pop-self-psychology analysis here. I think I'm at least on the right track. And I'm so damn mad at myself for being able to recognize at least some of the reality of it all but still unable to deal with it as well as I would like and feel that I should.
Life is messy. Get over it. Give up the fantasy. Embrace the beautiful parts of reality. Love is real and beautiful. Love cannot be fantasy. Accept the love. And give it back. Revel in it.
3.23.2006
A Statistic
In "A Statistic" on Body Count's 1992 Cop Killer album, Ice-T tells us that, "At this moment there are more black males in prison than in college".
Statistics can be dangerous and manipulative and if you want to fight with me on this I'm sure you can throw this back in my face. Here is my statistic though. Think what you want about it.
In 2002 more children died from malignant neoplasms in the United States than people (adult or child) died from terrorist attacks world-wide in 2004.
I got my data from the CDC's National Vital Statistics Report on Leading causes of death for 2002 and from a 2005 Washington Post article on the release of global terrorism statistics by the National Counterterrorism Center (NCTC). I used 2002 and 2004 because in my quick search those seemed to be the most recent available data. I did not pick the years because the data supports how I would like people to think about this.
I'm also acutely aware of the danger of putting forth numbers as the primary decision point for making decisions like government funding, where you should donate charitably, how to prioritize legislation, and etc. If this is solely a numbers game then sick kids get left in the cold. So I'm clearly a hypocrite and I want to manipulate you with my numbers and then tell you to ignore all other numbers. So be it.
The next numbers I want to dig up relate to how much money our government spends yearly fighting their "War on Terror" versus how much they allocate to pediatric cancer research.
Statistics can be dangerous and manipulative and if you want to fight with me on this I'm sure you can throw this back in my face. Here is my statistic though. Think what you want about it.
In 2002 more children died from malignant neoplasms in the United States than people (adult or child) died from terrorist attacks world-wide in 2004.
I got my data from the CDC's National Vital Statistics Report on Leading causes of death for 2002 and from a 2005 Washington Post article on the release of global terrorism statistics by the National Counterterrorism Center (NCTC). I used 2002 and 2004 because in my quick search those seemed to be the most recent available data. I did not pick the years because the data supports how I would like people to think about this.
I'm also acutely aware of the danger of putting forth numbers as the primary decision point for making decisions like government funding, where you should donate charitably, how to prioritize legislation, and etc. If this is solely a numbers game then sick kids get left in the cold. So I'm clearly a hypocrite and I want to manipulate you with my numbers and then tell you to ignore all other numbers. So be it.
The next numbers I want to dig up relate to how much money our government spends yearly fighting their "War on Terror" versus how much they allocate to pediatric cancer research.
3.21.2006
And how is your kid's immune system today?
From an email from one of Nathan's doctors yesterday:
PHA shows normal immune function.That is pretty cool. Really it isn't something we were terribly worried about. It means we can stop the weekly antibiotics to protect his lungs from infection. I can't say definitevly that my PHA would show normal immune function. Can you?
Serviceable Big Man
I wanted to spend more time on this (common theme in everything I attempt these days) but I'm just not finding it so I'll stick with half-assing things. I'm a big basketball fan and like all fans have been watching the tournament (although contrary to popular belief the tournament is now over). So I'm watching some known team play one of the unknowns. In this case there was no "Cinderella" in the works, just a good but undermanned team playing tough but not going to win against a power conference squad. One of the smaller team's big men pulled down a rebound and the announcer says, "So and so sure is a serviceable big man". What a compliment, huh? As I have thought about that over the last week it has become a metaphor for me. I realize that I'm a "serviceable big man". There are a lot of things that I do just fine. I do them fine because I have natural advantages. My size is my upbringing, my socio-economic status, my education, the support I get from the ones I love, etc. There are a lot of things I spread my time across. And I don't excel at any of them. Am I better than average? Hell yeah. I'm playing D-I, baby. Can I hang with the true big boys though? No.I'm a serviceable big man.
3.18.2006
Where we choose to live
This has to be quick. It is Saturday and I'm supposed to be working. This is a big deal because when I work on a weekend Susan has to work too. I haven't posted here for a bit but I have a couple of posts knocking around my head. I feel like I won't be productive if I don't get something written out here. Spoiler: This post ends on a bit of a morbid tone.
So I got to spend quite a bit of time with one of my closest friends last weekend and as we were driving somewhere he says, "I don't know why I don't spend more time with the people I love". The context was that aside from his nuclear family, most of his dearest and closest friends live far away. This is something I've struggled with. I'm working actively to make seeing family and my close friends a higher priority. It is tough financially and from an effort and planning standpoint and while I wouldn't say I was failing, I wouldn't say I was succeeding either.
This raises a bigger question for me which is, "Why do we choose to live where we do?". I won't do a lot of history, but Susan and I lived in Northern Virginia when we met and married. We say we felt a lot of "push" factors from there and that is true, although I think they may have been more internal and about us than about the place than we usually talk in terms of, but perhaps that is a post for another day. We chose the Springs for a variety of reasons. We felt a strong pull to be close to one of our sets of parents, but at the time thought that if we did that it would probably be it and we wouldn't ever try somewhere else just for us, but that if we went somewhere just for us now that we would have enough of a pull perhaps to move us nearer our parents in the future. Did that make sense? I like the Springs a lot. I have no roots here other the ones I'll explain in the next paragraph. Susan has some really great friends here. After roughly eight years here I have some people that I think could possibly be on the fringe/verge of becoming good friends. We have the church now and I'm attached to Susan having the choir because she loves it so much.
We aren't and haven't seriously talked about moving for a long time, so please don't think that is what I'm getting at here, but in general I can easily say that I would like to live close to my parents. I would also like to live close to Susan's parents. We can't have both, but we could choose to have one. There are a bunch of reasons that moving is hard for everyone and we have those like all people do. Here is where cancer comes in though. We have a bunch of additional reasons that moving would be hard. We really like and respect and have a great working relationship with Nathan's doctors here. Now there are good doctors in lots of places, but we have heard a lot of horror stories about pediatric oncologists in smaller communities and even in communities comparable in size to the Springs. I don't want to give up having doctors and a clinic close that we are comfortable with, and just as importantly that Nathan is comfortable and at home with. There is also the general stress factor. Nathan is in a great place healthwise, but there is an underlying stress that is inescapable for any cancer family. There would be benefits to being close to parents/grandparents though. There are the clear emotional benefits to everyone. There is also the selfish benefits that are one of my biggest regrets for not having moved close to family. Those are the ability to have built-in help and a means to escape with Susan. We have friends that would watch our kids. We have people that truly love our kids and us here, but it isn't the same as having parents to drop your children off with and say, "We really need/want to get out of town alone for a weekend". So there are those obvious benefits, but I doubt I could handle well the additional stress of even thinking seriously/considering a move. I barely hold on as it is (that is another post I'm working on).
So here is where things turn horribly morbid, but I can't help but think about them. If we stay here the more likely it is that we will lose Nathan while we live here. I don't pretend to know what it would be like to lose a child and how I would feel and react, but I don't know if I could leave here very easily if we lost Nathan here. I doubt I would have much attachment to a physical resting place, but I wouldn't rule that out. Right now all of my children's' lives have been lived here. All of my memories of my children involve Colorado Springs being our home. In some ways my perception of my family only exists here in the Springs. If I lost any of them here now, I'm not sure I could leave. Intellectually I know that the people I love live in my heart and I take them with me everywhere, but emotionally they feel tied here to this state. To this city. To this house.
So I got to spend quite a bit of time with one of my closest friends last weekend and as we were driving somewhere he says, "I don't know why I don't spend more time with the people I love". The context was that aside from his nuclear family, most of his dearest and closest friends live far away. This is something I've struggled with. I'm working actively to make seeing family and my close friends a higher priority. It is tough financially and from an effort and planning standpoint and while I wouldn't say I was failing, I wouldn't say I was succeeding either.
This raises a bigger question for me which is, "Why do we choose to live where we do?". I won't do a lot of history, but Susan and I lived in Northern Virginia when we met and married. We say we felt a lot of "push" factors from there and that is true, although I think they may have been more internal and about us than about the place than we usually talk in terms of, but perhaps that is a post for another day. We chose the Springs for a variety of reasons. We felt a strong pull to be close to one of our sets of parents, but at the time thought that if we did that it would probably be it and we wouldn't ever try somewhere else just for us, but that if we went somewhere just for us now that we would have enough of a pull perhaps to move us nearer our parents in the future. Did that make sense? I like the Springs a lot. I have no roots here other the ones I'll explain in the next paragraph. Susan has some really great friends here. After roughly eight years here I have some people that I think could possibly be on the fringe/verge of becoming good friends. We have the church now and I'm attached to Susan having the choir because she loves it so much.
We aren't and haven't seriously talked about moving for a long time, so please don't think that is what I'm getting at here, but in general I can easily say that I would like to live close to my parents. I would also like to live close to Susan's parents. We can't have both, but we could choose to have one. There are a bunch of reasons that moving is hard for everyone and we have those like all people do. Here is where cancer comes in though. We have a bunch of additional reasons that moving would be hard. We really like and respect and have a great working relationship with Nathan's doctors here. Now there are good doctors in lots of places, but we have heard a lot of horror stories about pediatric oncologists in smaller communities and even in communities comparable in size to the Springs. I don't want to give up having doctors and a clinic close that we are comfortable with, and just as importantly that Nathan is comfortable and at home with. There is also the general stress factor. Nathan is in a great place healthwise, but there is an underlying stress that is inescapable for any cancer family. There would be benefits to being close to parents/grandparents though. There are the clear emotional benefits to everyone. There is also the selfish benefits that are one of my biggest regrets for not having moved close to family. Those are the ability to have built-in help and a means to escape with Susan. We have friends that would watch our kids. We have people that truly love our kids and us here, but it isn't the same as having parents to drop your children off with and say, "We really need/want to get out of town alone for a weekend". So there are those obvious benefits, but I doubt I could handle well the additional stress of even thinking seriously/considering a move. I barely hold on as it is (that is another post I'm working on).
So here is where things turn horribly morbid, but I can't help but think about them. If we stay here the more likely it is that we will lose Nathan while we live here. I don't pretend to know what it would be like to lose a child and how I would feel and react, but I don't know if I could leave here very easily if we lost Nathan here. I doubt I would have much attachment to a physical resting place, but I wouldn't rule that out. Right now all of my children's' lives have been lived here. All of my memories of my children involve Colorado Springs being our home. In some ways my perception of my family only exists here in the Springs. If I lost any of them here now, I'm not sure I could leave. Intellectually I know that the people I love live in my heart and I take them with me everywhere, but emotionally they feel tied here to this state. To this city. To this house.
3.13.2006
St. Baldrick's
We spent a great weekend in Chicago. The main reason we went was to spend time with family and friends but the reason we picked this particular weekend was that our friend Matt was shaving his head to raise money for pediatric cancer research. St. Baldrick's is a tremendous and I think overlooked event. Kudos to Matt who personally raised over $5,000. Matt does this because he believes it is a worthy cause, but he also does it as a way to show support for Nathan and our family when at times I know our friends feel like they can't really help us. Thanks, Matt.The event that Matt participates in is at Fado Irish Pub in downtown Chicago and by the time everything is counted they think they will top $200,000. It is a great time. Nathan particularly enjoyed the event and even got to help shave Matt's head. He had a great time. I think on some level he knew he was someplace that he normally wouldn't be allowed to be in. The kids got to sit and drink pop and munch on bar food. The event organizers were happy to have a cancer kid in the house and all of Matt's friends that came out really made the kids feel comfortable while they were there.
Special thanks to Matt and everyone who gave to his fundraising.
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