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



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
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.



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.