Just chiming in with my good thoughts, Woeg. I’m glad to hear the news is as good as it could be right now. You’re all in our thoughts.
-D/a
A funny story, and a glimpse into the mind of my boy…
Friday, Riley got to go for a walk with his mom around the ward - he had to wear a mask and sanitize all exposed surfaces, and he also had to walk around with his IV unit (pole on rollers), but at least he got out of the room and got to see the art in the hallways and such. Being the type of kid he is, he insisted on pushing the IV unit himself.
After completing a circuit of the ward, they returned to his room, and up a small incline ramp that leads to the wing he was staying on. The nurse and the entertainment coordinator were waiting for them, so my ex went up to them to greet them with Riley trailing shortly behind. Suddenly, the eyes of both the staff members went wide, and my ex turned around to see Riley, standing on top of the roller base of the IV unit, “surfing” down the incline and into the hall, and giggling the entire time!
She ran and caught up to him, and asked him why he would do that…and he just shrugged and said, “Looked like it would be fun!”
I sure love that boy 
Hell, that DOES sound like fun!! :).
Well, we’ve had it lucky up till now. Until this week, the only side effect that Riley has suffered was the loss of his hair - otherwise, he retained his normal, bouncy enthusiasm and general good cheer. The docs, techs, and nurses at the treatment center have “adopted” Riley as a center favorite, for his knack at making them smile with jokes and general silliness.
Alas, we were spoiled - he made it through the induction phase of chemo with just the hair loss, and the whole first week of consolidation phase…but beginning this week, has been struck by nausea, vomiting, and a terrible headache that just won’t go away. It’s turned him a bit surly - he spends most of his day grumpy. And his voracious appetite has vanished - he doesn’t want to eat at all, and we’re all doing our best to keep him pushing the fluids. The threats of IV’s and needles helps a lot in that regard - little man HATES needles. His headaches are likely from the weekly lumbar punches, and the doc says they are pretty common and are gonna last a while. For now, the doc says nothing stronger than Tylenol for the pain, both because he’s a little guy, and because he doesn’t want him to get too resistent to anything heavier, in case he really needs it later. He is also likely going to have to have another blood transfusion next week - he had been doing really well, numbers wise, but since the 19th, he’s had something like 25 doses of chemo - and his hemo count has plummetted.
I hate, hate, hate that my little boy is suffering…and I hate the feeling that there is little I can do to make it easier for him. That said, it could still be worse - we’re still very lucky for how treatable his condition is, and though he hurts and is miserable right now, in the long run, he will be stronger for it.
Just thought I’d update everyone here, all you wonderful friends who have done so much to help out - your advice, your PMs, your general support has been tremendous. Thanks, eternally.
Poor little pet. Maybe a damp washcloth or scalp massage for his aching head?
aaaawwww, poor little guy. 25 doses of chemo, that is a punch in the gut. i can’t imagine.
i hope the end is getting closer. hang on tight to each other.
Cancer survivor here…I was given caffeinated drinks to help with the spinal headaches. Would he drink Coke or Pepsi?
I know my chemo made everything taste awful, but weirdly, dill pickles helped. Go figure. Sometimes it’s the strangest things that help.
Definitely praying for his recovery.
Seconding the idea of getting a PO Box for well-wishers, if possible. Kids like cards, yes?
From my household to yours, warm thoughts winging your way.
I am so sorry you all have to go through this. I can’t even imagine. I have a six year old little girl myself and I know how bad she handles even the sniffles. And I know how badly I take it when she just has the sniffles too. I wish nothing but strength and good health for you all.
Hugs to your little pumpkin. He sounds like a real trooper in the face of something no child should go through.
Hugs to you and yours.
All the best to you and yours, Woeg. Please don’t forget to take good care of yourself during this time as well.
You made me cry and smile at the same time. Positive thoughts headed in the direction of Macon…is that Macon GA. my home town?
I missed this before – please accept my good thoughts! We’re rooting for you, Riley!
My sincerest hopes for a full recovery go out to your son, as well as a furious rage to those diseases that harm children.
ACOR has a nice set of support groups.
http://www.acor.org/index.html
This sucks. Hope he feels better soon!
Hey all, sorry for the “drive-by” posts - we’ve been under a few, serious “get-it-done-or-find-a-new-job” deadlines at work, and frankly, I’ve often just been too exhausted emotionally and mentally to be able to get online and do anything.
Not that I want a pity party, but my stress levels are through the roof - I want to vent about them, but I don’t feel it is appropriate, especially with what my kid is going through - makes my other stuff seem fairly petty. I am torn in that I sometimes want to post here to my friends and just “shout” out my headaches, but I hate coming across as a whiney dork. Grrr.
Anyway, Riley’s nausea comes and goes, he’s doing pretty good this week. We had a slight incident on Tuesday where he came out of anesthesia a bit early - after the spinal tap but before the pain meds could really kick in. For about 45 minutes, he was a bundle of rage, screaming and shouting and hating on everyone. It was very rough for my ex, who started tearing up just telling me about it. This is not how my little boy normally is - he’s usually the sweetest thing, but the combination of pain and the effects of the anesthesia (the docs told us that the anesthesia could cause aggressiveness) just put him in “crazy mad” mode for a while. He came out of it tho, and by the evening, couldn’t even remember being mad.
And Fed Up - it is indeed Macon, GA! I actually live in Warner Robins, and Riley a bit further south in Hawkinsville - but Macon has a really great Children’s Hospital and cancer support center.
Good heavens, whine away here whenever you have the chance!!! most of us don’t understand “sick kid” stress, but some do, and I’d bet we all understand “job from hell” stress, and I can barely begin to imagine the combination of the two :(.
So - vent away, nobody here will think you’re being a wuss or that you have no right to feel at your wits’ end.
Poor punkin, the anesthesia / pain meds thing. Next time, hopefully they’ll be more careful with the timing. I know you don’t want to give too much in the way of narcotics while they’re also under the influence of other stuff but hopefully they’d rather err on the generous side in the future.
How much longer is this round of chemo slated to go on?
Come on over to the pit and join the minirants thread. We rant about all kinds of petty stuff there. I ranted about the squirrels in my porch roof.