Wouldn't you?

So, if you left a voicemail with your HR rep explaining that you were going to be exhausting your leave to take care of a sick child and that you needed to know what your options were regarding a) going negative in annual leave or b) requesting leave without pay under family leave, wouldn't you expect to hear back pretty quickly?

Now, I'm being really impatient here. I left the voicemail early afternoonish yesterday, which is late afternoon where this HR rep is located. But, that also means it is late morning her time now and I haven't heard a peep back. Seriously, I would at least expect an, "I don't have any answers yet but I'm looking into this and will be back to you as soon as I can?". And given the nature of the request, I would expect that to come quickly.

Really though, I suppose it is only the matter of a few working hours. Perhaps I've become a slave to our instant communication age.

I'm just cranky about other shit this morning and taking it out on my HR rep. But hey, if you can't beat up on your HR rep when you are having a shitty morning...


Back to School

My boy is going to school tomorrow. "All day" school. First grade. They have been in session for a couple of weeks. Nathan's immune system hasn't been up to snuff for being out of the house much, let alone sharing a small space with a bunch of snot-nosed kids. He has been getting tutored at home, but we want more than the learning for him. We want him to experience school and make friends. He has a window of a couple of days that he can go while his counts are up and before we head to New York for tests and maybe more treatment. There is a really high likelihood that the next treatment he gets will knock his immune system down again for awhile where he can't be in school, so I'm really happy that he gets to go to school tomorrow. Really. I feel happy about it. It is nice to feel good, even if it is only for a brief moment.

As I closed the door of their bedroom tonight after going in to tell them to stop talking to each other and go to sleep, I heard Nathan say quietly, "Julia, I'm going to have fun tomorrow". And yes, I'm teary-eyed as I type that.

My boy is going to have fun tomorrow.



I'm struggling this morning. I'm trying so desperately hard to focus on work I'm behind on and in serious crunch time with. My mind keeps wandering. Today I can't help wonder if I'm doing enough for Nathan. Am I providing him with the life he deserves in the likely short life he will lead? That is the question running through my head, eroding my peace of mind and leaving me feeling more selfish than anything. You see, I don't think I'm worried about Nathan as much as I am for myself on this one. What difference does Nathan know? No, what I really scared of is that when he is gone that I won't be able to be satisfied that I did enough or provided enough for him.

I haven't posted much here lately. Probably because I've been spending a lot of time feeling sad, selfish, angry, lost...exactly all of the things I initially created this blog to vent about.

Mark my words...

For obvious reasons I'm a big fan of any organization that focuses on awareness of and finding cures for pediatric cancers. Coaches Curing Kids' Cancer combines these noble efforts with sports, another thing I'm a big fan of.

For those ESPN College GameDay fans, former college football coach and current analyst Lee Corso was just named the organizations National Spokesman. Good for Corso. Good for the organization to have such a recongnizable (thing about the people involved in it and their target) spokesman.

I've seen glimpses into corporate press release writing and seen "quotes" sent to the person they would be attributed to for review before incorporation into a press release. This was obviously done with Corso for this release, and the author of the quote got Corso's signature "Mark my words..." into it. Nice touch.
“What a win-win,”’ said Corso. “Teams get to say thank you to their coaches while the money goes to new pediatric cancer treatments. Mark my words – Coaches Curing Kids’ Cancer is going to be huge.”


Bad news for the cancer dads

Psychological Distress and the Impact of Social Support on Fathers and Mothers of Pediatric Cancer Patients: Long-Term Prospective Results -- Wijnberg-Williams et al. 31 (8): 785 -- Journal of Pediatric Psychology

I've just read the abstract. I'll have to get one of my many doctor friends (or librarian sister) to dig up an electronic copy of the paper.
Conclusions Dissatisfaction with support and negative interactions that fathers experienced significantly affected their levels of psychological distress. No such effect was found for mothers.
I wonder if it delves at all into what coping mechanisms, or lack thereof, that causes fathers, in general, to have more impacted levels of psychological distress in the long term than mothers. Perhaps that is for a future study.


As if I needed another reason to love the 1985 Bears

This is from today's Chicago Tribune.
Jim McMahon and many other members of the Bears' 1985 Super Bowl champions will convene in Lake Geneva, Wis., this weekend to participate in a charity golf event to raise money for the Neuroblastoma Kids Foundation.



Nathan's CaringBridge site went over 200,000 visits sometime in the last couple of days. That blows my mind. Susan created the site 1,213[1] days ago. I know the traffic ebbs and flows depending on Nathan's status (I think we have been getting somewhere around 300 visits a day over this last week of chemo), but just for fun on average we have seen roughly 166 visits per day over a period of 3 years and 4 months.

Wow. Thanks for caring.

[1] I think it is fun that the quickest and simplest way for me to calculate the number of days was to query Oracle with
select sysdate - to_date('2003-04-13', 'yyyy-mm-dd') from dual ;


Vomit and Neuro-Toxicity

I had planned a fairly light post about the casualness that a cancer kid and a cancer dad talk about things like vomit. That was when the day was going well and Nathan was playing on his hospital bed, laughing, and trying to eat something after just having thrown-up for the second or third time of the day. All was good (a cancer family has a different scale than most). I think I'll still go ahead with the lighter side. I wrote a fair amount about the other stuff on Nathan's journal. I don't really care to write about it again, but if you want the complete picture of the day, you should read the account over there too. Neuro-toxicity sucks.

Anyway...here is a fairly typical dad/son conversation during a round of chemo.

Setting: Mexican restaurant drivethrough. I've just been handed a bag with breakfast burrittos and am waiting for the person to run my credit card. Nathan throws up in one of the ever-present pink "throw up bins".

Nathan: Daddy. I threw up.
Me: Okay. I'll dump it after I pay and we can get out of the drive through. You still want your burritto?
Nathan: Yes.

Nathan opens the potato and bacon burrito to go at it with a fork.

Nathan: It has bacon! Its soft! I like the bacon. Are these mashed potatos or breakfast potatos?
Me: Breakfast potatos.
Nathan: Did I throw up once or twice last night?
Me: I think just once.
Nathan: It looked like ground beef and melted cheese.
Me: Yes. It did.

And with that, conversation dwindled off a bit as dad and son enjoyed their breakfast burrittos in the car on the way to the hospital for another day of chemo.