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.

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

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

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

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).



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.