Words

Here are a few words that have popped up frequently in conversations I've had lately. In some cases the context has been Nathan's disease and the pressures it puts on our family, in others the context has been music or other "normal" topics. I just find it somewhat interesting that they keep popping up. "bleak" and "forlorn" are words that have been used to describe music that I have recommended to people. I haven't been purposefully seeking bleak and forlorn music, but I must be drawn to in that direction in general.

bleak
1 : exposed and barren and often windswept
2 : COLD, RAW bleak November evening
3 : lacking in warmth, life, or kindliness : GRIM b : not hopeful or encouraging : DEPRESSING bleak outlook c : severely simple or austere

forlorn
1 : BEREFT, FORSAKEN forlorn of hope b : sad and lonely because of isolation or desertion : DESOLATE forlorn landscape
2 : being in poor condition : MISERABLE, WRETCHED forlorn tumbledown buildings
3 : nearly hopeless forlorn attempt

hope
intransitive verb
1 : to cherish a desire with anticipation hopes for a promotion
2 archaic : TRUST
transitive verb
1 : to desire with expectation of obtainment
2 : to expect with confidence : TRUST

fair
I couldn't quickly find a good definition of "fair" in the context it is used, which is often, "It isn't fair that you have to go through this". The closest thing I quickly found is in the synonym "just".
2 a (1) : acting or being in conformity with what is morally upright or good : RIGHTEOUS (2) : being what is merited : DESERVED just punishment b : legally correct : LAWFUL just title to an estate

Fair/just is an interesting one. Buried in the various definitions of fair and just is this concept of conformity with what is merited, or deserved. There are some things that no one could deserve. If something can't be deserved, then fairness is a concept that cannot be applied. No child deserves to be sick. No parent deserves to watch their child fight for his or her life or to be forced to make decisions based on weighing length versus quality of life. These things aren't fair because the concept of fairness cannot be applied to them. They aren't unfair either. They can't be.

Being a parent is an awesome and terrible responsibility. Dealing with this disease is not what I expected, but it is what I signed up for.

All definitions taken from www.webster.com.

Borrowing from Bob

Things have been a bit slow here, and over at ANitB. It isn't so much that I don't have a lot to say or a lot on my mind, it is more that I either have too much swirling around to nail down something interesting or helpful to me to write, or I'm avoiding things when I can. I think over the last couple of weeks I've been using music as an outlet. I'm trying to learn to play it, and I'm listening to some new and interesting things. Today I have a particular verse of a Bob Dylan song stuck in my head. I've known the song for ages, but have been reintroduced to Buckets of Rain by Jeffrey Foucault and his collaboration with Redbird.

Life is sad
Life is a bust
All ya can do is do what you must.
You do what you must do and ya do it well,
I'll do it for you, honey baby,
Can't you tell?

Listen to Redbird's version here (5.05 MB via RapidShare).

Uncertainty

Not knowing is not good. Or maybe it isn't. Maybe not knowing is okay if what you don't know is bad. What I don't know right now is if the one round of chemo Nathan has had since this bone marrow relapse has done any damn good. What I won't know for awhile is if the second round he will hopefully start next week (Send good thoughts on this. Timing is important when hitting this with multiple rounds of chemo.) will do any good. I don't know what is next in terms of treatment, therapy, travel, etc. I don't know a lot of things related to this and all of those unknowns scare the shit out of me or worse. Not knowing sucks. Or maybe it doesn't. I guess I just don't know.

It's all relative

I'm sick. I feel pretty low. Nathan is sick too. And his counts have been bottomed out for awhile. Makes it hard for me to complain too much. I can't even imagine how nasty he has been feeling.

The Importance of Family

My parents are coming for a visit. We were trying so hard to visit them, but then everyone's health here started to "go South". I'm really looking forward to having them here. "Looking forward to" isn't quite right. I think some of that good parent love will be good for me. Once we started our family I gained a new appreciation for my parents. I think that is natural. You begin to understand what the love they feel for you must be like as you experience a similar (I don't believe any love can be the same) love for your own children. I get an even stronger sense of that now. I struggle constantly with watching Nathan fight, mostly unknowingly, for his very life and the fear and pain that it causes me. I feel so hopeless so much of the time. I know my parents feel the same way as they fear not only for the life of a grandchild, but also feel helpless while watching their own child suffer. They sure have had a rough road through this battle too. They do make a difference, even though they may not feel that way at times.

Fever Watch

We are all pretty tired around here. We have had the obvious stresses of illness, hospital stays, restless sleep, and etc. It seems we may all be sharing a bit of a bug now too. Lauren's nose is running and she was crankier than usual. Susan was dozing by 8pm and out for the night as soon as Lauren went down. I'm beat at 10:30pm as I write this. I just checked Nathan's temperature though and it was higher than I'm comfortable with. His docs are being really good about trying to keep him out of the hospital. If we can get his fever down with antibiotics and fever reducers (tylenol) then they want to keep him at home. His fever just shot up pretty good though. It was time for the tylenol, but I'm not comfortable going to bed until I know it has gone down. I'll check him again at 11:30pm and then hopefully it will be low enough to crash until our alarm goes off at 3am to check him and give him more tylenol. This sucks, but it is better than having him in the hospital if we can get it back in control until his counts go up.

Honesty about "the end"

Susan pointed this out to me and it popped on my Google News feed about neuroblastoma as well. If you look hard enough you can find a lot of stories/biographies about kids with neuroblastoma and other cancers. There are lots of smaller town papers that carry features about the kids and families that are sick in their community. You can read blogs or journals that families keep about treatment. Rarely will you find a lot of detail shared about a child's final days. Occasionally you run across a journal that lays it all out there. There is a story prominently located on The Arizona Daily Star's online service about the final days of a young boy's brave and brutal battle with neuroblastoma. This article isn't an easy read, especially if you are close to Nathan or any other child fighting this battle. It is very brave of this family to share this part of their son's story. I can't imagine a more private time and event, but it is important, I think, for people to understand the pain and brutality that cancer wreaks on these amazing and beautiful children. This family was very brave to have shared. We should honor their bravery by reading and sharing their story.

Entitled? You Betcha!

Tough couple of weeks. First was the relapse news. Then was the go/no go decision for taking a vacation. Then there were the fevers and hospital stay after making the "go" decision. Then there was Julia with pneumonia on oxygen at home while Nathan was in the hospital. Susan and I are completely drained. On top of the logistics and the physical just doing things that have to be done, the weight of the stress and the fear and the worrying is completely draining and exhausting. You know that "knot" in the pit of your stomach that you sometimes hear about? I didn't know that it was a real physical thing you could feel. It is and it is something that I'm just living with for the time being.

Anyway...on to the entitlement story. Thursday morning (after getting Nathan settled into the hospital in the middle of the night and getting about 2 hours of sleep) Susan called saying that Julia was feeling very bad (she had been battling a cough and intermittent fevers for about 10 days) saying that her babysitter took her pulse oxygen level and that it was really low. She already had a doctor's appointment scheduled that we were going to cancel, but decided we needed to keep. Leaving the hospital and going straight to get Julia and then straight to the doctor would get me to the appointment late. I wanted to change clothes at least (I was wearing the sweat pants and t-shirt that I had worn to the hospital and "slept" in), but I figured I would try to keep as close to the appointment as I could. On the way I decided to call and warn the office I would be late so they didn't think that we had just not shown up. I had a conversation with the scheduling lady that went something like this:

Me: Hello. I have an appointment for my daughter that I will be a bit late for because I just left the hospital where I spent the night with my other child. I didn't want the front desk to think we were just a no show.

Lady: How late will you be, Mr. Gentry?

Me: I think about 15 or 20 minutes.

Lady: Hmmmm......If it were 5 minutes that would be okay. 15 or 20 will cause us scheduling problems.

Me: Ummm......Okay. You see. My son has cancer and was just hospitalized with fevers and a compromised immune system. I can't be on time because I just left the hospital.

Lady: I know. But you will mess everyone else's appointment schedules up. Let me see...Okay. You can see the PA (Physician's Assistant) when you get here.

Me [patience gone]: Look, Lady (and I did actually use that "title"). I'm going to be 15 to 20 minutes late. I called out of courtesy. My daughter will see the doctor that she saw last week and has her appointment scheduled with when I get there.

Lady [flustered]: Okay. I guess we'll squeeze her in.
Luke hangs up phone.

The practice we go to is great. They give us lots of care, listen closer to what we as parents have to say and suggest than I would guess they do for most people, and really work with us. The doctors and nurses "get it". Apparently the scheduling lady did not.

Weekend

Nathan: Daddy, what day is it?
Me: Friday.
Nathan: That means no chemo tomorrow! Julia! I have no chemo tomorrow!

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.

Sprinkler Jump

Sprinkler Jump,
originally uploaded by LucasG.

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.

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.

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.

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.

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.

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.

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.

Nashville Scene, USA - 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 ...

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.

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

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

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.