Awwww...Judith posted this in a blog comment, and I figured someone might actually want to read it! (Please disregard my blushing...)

Blog comments don't allow for formatting, so if it's chopped up too much, that's my mistake. You really can't have too many paragraphs, can you?

Well, I thought it was about time that I made a comment. I can't say enough about the blog and what my sister does. She sure can write and say things in such a humorous way, even if it isn't so funny. But I have to say that I could not have made it through this past month without her. Thanks Beth for all your wisdom, warmth, words and humor during this time of, well, stress and worry.

To my sister Karen in Tenn., I know that you are doing all that you can from there and wish you could be here more often. Don't worry, your prayers are felt and I know you are here in spirit. That song of Mitch's is awesome and we are looking forward to that being put to music!

To Mom, you are always my steadfast strength. Thanks for hanging in there with me for no one knows the pain like this more than you do and so you and I can really appreciate each other's company now. I love you Mom.

Also, to all the other prayer warriors out there. Thanks to you too. Keep those prayers coming. Those are felt and have kept me sane through this time.

To those who have provided meals, my family thanks you tremendously and so do I. It is a great relief to not have to worry about what is for dinner, not to mention that we are enjoying the variety of foods as we are not picky about what we eat. Chase seems to be eating everything. His appetite has certainly not been hurt and for that I am glad. The only thing we have found he cannot tolerate well is Mexican food which is too bad because he really loves it. :-(

I need to thank many people too, who donated leave time to me so that I may stay home with Chase. This time with him has become very precious to me. There have not been many days yet in which he has been very sick, those may come. But the stays in the hospital and days to come in January and February away from home will be hard and would not be possible if it were not for the many giving people in the schools and other people who work for the State. Thanks SO MUCH for donating leave time for me! Thank you for allowing me to put this on the blog.

Please know that we appreciate all of you who pray, call, come by or just think about us from time to time. We will get through this major bump in the road!

Thanks to all of you.
Judith

When bad stuff happens, you sure find out how many friends you have, and boy, do y'all have friends!

I just got the call - the most anticipated side effect of chemo has started... He's losing his hair. He was briefly fascinated with pulling out hanks of hair on his legs and arms. The stuff on his head is still too short to grip, but it looks like soon he'll be bald from his toes to his dome.

So that's the bad news, but the good news is we know he actually got the "good stuff" and not just a bunch of saline or something. He'd had so few side effects I was beginning to worry (hey, it's something I do well, so I stick with it!)

Mom and I went to Greensboro to see how the family was doing, check out that HDTV (wow...), fix a porch light, get our toenails painted, pick out all the chocolate in the Halloween leftovers, and just in general annoy Chase and Jacob like it was our job. All in all a fun day (at least for me - heh).

Chase takes after his father with that competitive edge. He certainly didn't get it from our side of the family! We played a round of Scrabble in the afternoon. I specialized in 2 and 3 letter words, while Mom existed solely to block any and all of Chase's big plans. I don't know who won that game, but I doubt it was me.

We girls went to get our toenails painted, and Mom got her fingernails buffed and polished while Judith and I browsed Costco. Then we tried to convince the guys at Brewster's that it was raining and we should get that free second scoop of ice cream. Didn't work :-(. But it was good stuff anyway, and Judith got 4 punches on her card because we made a "new best friend" of another customer. Mom can talk to anyone, and Judith ain't half bad either.

Back at the house, I knew carting tools around for Dad years ago would come in handy! I managed to fix their front porch light so all the wonderful folks bringing dinners would not trip up the stairs and splatter the meatloaf on the storm door. I don't know if y'all realize how much the family appreciates those dinners, but they do! And it's yummy stuff too! (needs more chocolate though)

I have a new favorite game to play - Mexican Train! Their next door neighbor (and stress reliever extraordinaire) Lori brought over Courtney, Katie and a double 12 dominos set to teach us all the game of Mexican Train. Chase (first time player) challenged Courtney (experienced player), and only those two kept score. Things didn't go well for Chase this time, but since that game's now on my Christmas list, we'll get more experience and you can beat her next time, right Chase?

Just a few more days and back in to UNC hospital he goes. I think I'd better stock up on DVDs...

Halloween pictures!

I think they took a long time because somebody decided to crop herself out. Humpf!

But how did she manage to crop the bike out too?

Chase seems to be holding up well, although he tainted his Carolina blue soul by going the State game this weekend (they lost, of course).

As for chemo side effects, the only complaints I've heard are a bit of tinnitus and, oddly enough, sensitive teeth. I hope that stuff's doing its job on the tumor! We have to wait until week 10 or so (around the end of the year) for a 2 hour long MRI to assess his progress. Can't wait! (I think).

Still no word from Karena on those Halloween pics! What's up with that?

Mom insisted I add this video. But really, is there anyone left who hasn't seen the Evolution of Dance?



Best 6 minutes on YouTube...

Before it starts to echo in here, I thought I'd give the tiniest of updates, and hope that in doing so I can flush out Karena's Halloween pictures that Chase swears she took. Karena, where are you?

Judith dragged Chase shopping for winter clothes today. I'm sure that was fun. But he has something warm to wear to this weekend's NC State game here in Raleigh. And he went for a run. Really, if he needs exercise, my lawn needs mowing...and I have cookies!

He has just under 2 weeks to recover from chemo before he gets stuck back in the hospital for the next round on November 14th. This second round might even be a bit easier since the first round was 5 days of Cisplatin (which is supposed to be the worst) along with Etoposide, and the next will be only 3 days of Vincristine and Cyclophospamide. Two more cycles, one of each, ending around the first of the year, then 3-6 weeks of radiation. Somewhere.

Updates will be sparse until the 14th, so shoo! Browse around the blogsphere; play some Bejeweled (or for the more erudite, Bookworm). Mow my lawn (remember - cookies!) Check out the Waiter Rant blog (PG 13, but it's really good, and not all about being a waiter). Watch these guys make a Mother's Day card. Hee! I always think of Chase and Jacob when I see this (and I mean that in the nicest way ;-). Laugh at celebrity clothing choices on Go Fug Yourself (again, PG13 and not for everyone). See if you can catch the geyser on the Old Faithful WebCam (I've yet to time it right myself). If you're really bored, you can dust off my old blog about bathroom remodeling and other expensive hobbies (scroll all the way down to start at the beginning). I was learning how to blog along with a bunch of more creative Clay Aiken fans, so there are a "few" Clay mentions mixed in with the renovations, garden stuff, travel stuff, and just stuff.

Or start your own blog and see if you can post when there ain't no news!

Pardon any chocolate smears on the blog tonight, but it is Halloween. Chase, as far as we know, is currently wandering around on Franklin Street. I don't see him, do you?

Wait, here's a closer picture:

Oh yeah, that helps...

I hope Chase doesn't mind that he travels with an entourage consisting of his mom and his aunt. Think like a Rock Star, Chase! This afternoon he and his peeps went to see the Radiation Oncologist, another good doctor (there seem to be a lot of them here!) By good, I mean he talks so we can understand him, makes sense, and answers all our questions, even if it does take more than an hour and lands us all in rush hour traffic.

The Proton radiation still seems like the best overall choice. I don't think it necessarily works any better on the tumor, but it should keep side effects to a minimum (and we're looking at the 50 year plan here). The two possible stumbling blocks are finding him a slot, and getting the insurance company to pay for it (which shouldn't be a problem, but we don't have a definitive answer yet). We'd drag him and his surgical masks to Boston during flu season if that's the only place with room.

When we shook hands to leave, I slipped the doc a $20 and mouthed "Jacksonville". Think it'll work?

Nothing much to report tonight. He's home and, while not exactly feeling normal, he's hanging in there. If chemo's so tough on the digestive system, why's he craving Mexican food? Maybe he's looking forward to a trip to Texas, but I'd rather he be craving some fish, caught fresh off the coast of Florida, if you know what I mean.

Sadly, unless Mom offers up a more persuasive argument than I've managed, it seems we'll be missing out on the Disney magic this January. No Kennedy Space Center, no beach, just a lot of gas (not from Mexican food) driving to Houston. What fun!

I guess I've flogged that dead horse about enough now....

Bald head, complete with surgery scars, USPS jersey and bike shorts, surgical mask, IV pole & bag - what's this? Chase is going as Lance Armstrong to tomorrow's big Halloween shindig on Franklin Street in Chapel Hill. Dry Press release here; scary news item here. His doctor said it was okay to go and I hope he'll have fun.

Actually I hope it gets cold and rainy and he doesn't want to go.

Stay safe! And bring back pictures!

Home!

Nobody sent me a picture of him kissing the front walk, but I'm sure he did, right? Anyway, he was released this morning with lots of instructions, prescriptions, and a box of surgical masks. Last I heard they were watching his tail lights disappear as he left to visit friends. I guess he's not too sick yet! Really, he did extraordinarily well on his first run through, but he does get tired a bit earlier than the average teenager.

The kicker today was a visit from the radiation oncologist. No matter how well the chemo shrinks the tumor, he's going to have to endure radiation treatment too. Traditional photon radiation helps destroy the tumor, but it can damage adjacent tissue as well, so it's worrisome. We want to keep that fine brain working well for our future president...

There's a relatively new form of radiation therapy called Proton Therapy. It does its job a bit more precisely, so it causes less collateral damage. That's the good news. The bad news is that it's only available in a few places here in the US: the Loma Linda, CA and Boston, MA centers are old hands, then there's Bloomington, IN, Houston, TX, and the newest in Jacksonville, FL, which just treated its first patient in August. Have they worked out the bugs yet?

The doctor mentioned Boston as the place they generally refer. Boston? In January? :: shivers :: MD Anderson in Houston is relatively new, but Judith and Buddy have contacts there who might help smooth the way. Jacksonville's an easy drive from NC, close to the beach for restorative weekends, close to Disney World for exhausting weekends, close to the Kennedy Space Center for infomative weekends, and Mom might even be able to get a time share there, which beats the heck out of hotels for the minimum 3 week treatment span.

And did I mention it's an easy drive from NC? I wonder how many of Chase's friends would drive down for a weekend...especially if some nice aunt slipped them some gas money.

Not that I'm leaning in any particular direction, mind you.

The promised pictures:

Is he really asleep? Is that the hint of a smile I see? Did you think we'd really get away with it?

(No, yes, no)

Your dinner is served.

If you really want it, go right ahead...

The UNC game just let out and since they choked...er, lost, there are too many grumpy drivers on the road for us to leave right now. Spades, it is!

Buddy, being Buddy, is determined to WIN! Judith, being Judith, is trying not to smack him for being hyper competitive (or hyper AND competitive, according to Grandma). Is the traffic clear yet???

Chase's last day of this cycle of chemo was a bit rough. The barf bucket stayed close, but clean. Fingers crossed. He had some visitors this afternoon and when I get home, I'll put up a picture of a local sportscaster trying to steal a bite of Chase's dinner. And Grandma and her Sharpie!

And tomorrow, it's bye, bye UNC - well, for 2 weeks anyway.

A yellow flag has just been thrown on Buddy for showboating. We're googling the penalty for unsportsmanlike behavior in Spades.

Still traffic out there...

I've messed with the formatting to keep pics off the main page, so those folks with dial up won't have to deal with waiting for everything to load. Just click on the link at the bottom of the one you want to see and it'll load just that one blog entry. Hope this isn't too confusing!

Besides, I wasn't sure Chase really wanted this pic on the web, but here it is!


Adam's changing the dressing on his port. The yellow "butterfly" is the needle that goes into the port directly below the skin. The dressing's there to protect the stitches which will be out soon enough.

Since Grandma's back from Vegas and Buddy took the day off to see Chase through the rest of chemo, I ended up staying home today, messing with the blog and catching up on laundry, shopping, and vacuuming (ewww). I don't miss wandering around in the parking deck looking for my car, but oddly enough, I miss Chase!

Just a quickie - I just realized that comments can't be accessed at the hospital (it's blocked!), so I've created an email address and added it to his profile. No guarantees he'll respond to emails (c'mon, he's a teenager), but I'll make sure someone in the family reads the emails to him.

That's it for this entry, no matter what it says below...

You're in luck! Tonight's blog was going to be a treatise on the use of mannitol to disrupt the blood brain barrier and increase the efficacy of chemotheraputic agents in the treatment of brain tumors, but...that sentence pretty much exhausted my knowledge and PubMed isn't coughing up anything useful tonight either. All I know is that it seems to work.

Chemo in the morning, nap, then pool or air hockey in the teen center in the afternoon/evening. Y'all come by - there's room for more! He's getting a bit of cabin fever and visitors really help him feel less cut off from school and such. A friend (sorry, I forgot his name) loaned him a portable DVD player to hook up to the TV in his room and he's borrowed some movies to watch too. So thus far chemo's mainly been boring, with a dash of nausea on the side, although I think this afternoon it was really just hunger. Once he ate, he was performing calisthenics on the bed! He had to call the nurse in to unkink his IV line...

Dr. Gold said he's doing better than 99.9% of his patients on these drugs, and they're pushing the anti-nausea meds to try to keep it that way. Chase had hoped to be released on Saturday after his last infusion, but they're encouraging him to stay one more night, keep the fluids flowing, and keep his perfect record of never losing a meal. Sorry, Chase!

Chase, his (everpresent) pole, and some friends in the teen center.

He figures the hair's coming out anyway, so he had Nikki buzz it off. Here he's checking out the movies and games he can buy on iTunes with the gift certificate a 4th grade class kindly sent him. No buying until you send that thank you note, Chase!

Shhh! While he sleeps through chemo, we're going to add to his measly two moles and Sharpie some constellations on his head. Think he'll notice?

Same stuff, different day

They had a bit of a hold up on Chase's daily pre-chemo kidney test (okay, the "pee test"), so he entertained us a bit by playing his guitar.

I tried to take some video to put up on YouTube for y'all, but he didn't cooperate. If you ever need a time waster, that's the place to go...maybe we can add something later when Chase feels more willing. As if.

About noon, he finally passed the test and got chemo started. Since he hadn't slept well the night before, they gave him a little something extra and he got a nice nap in. Unfortunately, it seems he's gotten his first side effect, loss of appetite. I wish I could trade with him, he needs to eat way more than I do.

While he took his nap, Judith and I went to A Southern Season for a bit of shopping and a yummy lunch. We both agree that their chicken salad is very good, and their chocolate department is droolworthy. Christmas will be here soon - just sayin'.

I promised Mom I wouldn't blog about her unrepentant lunch time phone call from Vegas, so I'll just let her fill you in on her favorite slot machine "Cops and Doughnuts" later. She was excused to fly out there since the trip was planned quite a while ago. Her friends were coming all the way from Australia to meet her - can't miss that!

On our way back from lunch I was boring Judith with a discussion of sugar and how it's hygroscopic and that's why I thought the crispy Boston Baked Beans were actually quite fresh and not stale like she thought, and she said "you always cease to amaze me". I just had to laugh. She'e either very cleverly insulting me, or...she's Judith.

Came back to find Chase watching TV so we kicked him out of bed (the old "you've got two feet, use 'em!") to go take a walk. Maybe that will help his appetite!

Pictionary in the Teen Center with Karena.

Some friends dropped by - with a DVD player and some DVDs! Hey, next time bring something other than baseball videos, okay? What about me?
Why's that guy have a rubber glove on? He scares me.

Anyone up for pictures?

Sorry to all of you on dial up... Buddy and Jacob came this afternoon, so I bailed early and came home to post some pics from today.

Chase's first infusion. He had a dose of an anti-nausea drug first that made him a little glassy eyed, but at least he didn't get sick!

A couple hours later some friends came by for a visit to the teen center. It's pretty well equiped and not crowded at all, but it's only open a couple hours in the afternoon and a couple more in the evening.
Er, yes, Chase lost. Next time he'll win, though, for sure.

(I'll get that check in the mail tomorrow, Griffin)

Judith's so proud of her Mr. Potato Head. She's just a wee bit nutty...too many fries at Wendy's!

Blog from the play center!

Oops, I mean the "Teen Center". Currently, Griffin is beating him soundly at Stratego. Not nice taking advantage of a kid on chemo... Then again, Chase has had his moments too. This morning when his nurse was flushing his port, just about to start the chemo, he startled and "fainted". We laughed, but I made Judith smack him. The nurse bided her time then "oops" squirted some chemo drugs (only saline) on him.

So the pediatric floor is cool ("and the nurses are all so young", Chase pipes up). Wendy's still has the best food here. Chemo's over for the day and Chase is still fine, waiting for his hair to fall out so he can join the merrymakers on Franklin street for Halloween.

Judith's playing with Mr. Potato Head. I think she's been here too long!

In by 11, out by...

His surgery was scheduled for 12:30, but it was 3ish before he was put out briefly for the portacath. The surgery went great, and he didn't get sick afterward either. He was HUNGRY! Next time he knows to whine when they say "no food after midnight" when something's scheduled so late.

He's in a room on the Pediatric floor, and all the nurses are fawning over him, of course. There were 4 hanging out earlier today when Dr. Gold came by to shoot the sh...breeze. He's rather...colorful for a pediatric oncologist. Anyway, after Chase got settled in his room we walked down to Wendy's for dinner, then the cafeteria for dessert, then Karena came and had to buy him a little snack, then he asked Judith to go out to the car for more food! Did I mention he was HUNGRY? Judith tried to put him off till morning, but when he said "It's okay, Mom, I only have a brain tumor", she and I took our guilt trip out to the car to get him his special cereal. Laying it on a little thick apparently works.

He's been doing a pretty good job in the food department lately, putting about 15 pounds (now 17?) back on after a couple weeks of nausea and headaches, followed by surgery and a week or so in the hospital. The Lexington BBQ festival probably had something to do with a pound or two of that, ya think?

Tonight, rest, tomorrow about 10AM they'll start hanging the Chemo.

Barring anything unexpected, this will be the last update until Chase goes in on Monday.

I really missed out not going to Chapel Hill today - I heard Chase's GFR was "awesome". They injected him with a radioactive marker, then he was in some half a million dollar machine that showed his insides while his kidneys gathered up the radioactive stuff and got rid of it. A "glowing" report (and no, not with the naked eye so don't ask to see anything).

Although he seems to have missed out on the cold the rest of the family passed around last week, we really want to make sure he's healthy going in to the hospital next week. Is it overkill to put of box of these by the front door? Maybe we'll just make him wear one. That'll go over real well.

I'm in charge of DVD entertainment for next week, but since he'll be home the following week, I have a special request for Buddy. Five bucks a month - try it, you'll like it! If not, you just turn it back in! (Does Buddy even read this blog?)

Tests done, Chase is home for the weekend. I asked him if he had any plans (Lexington BBQ Festival) for the weekend, but he said no, not really. (events) I'm sure anything his friends want to do (travel info) would be just fine with him!

Why am I craving pork all of a sudden?

So if Chase is the one facing Chemo, why am I queasy?

Maybe I've been reading a bit too much about the drugs on the list they gave him. Trust me, you really don't want to click on the links.

• Cisplatin - anti cancer drug; side effects can include nausea, hearing loss, kidney damage
• Etoposide - anti cancer drug; side effects can include nausea, temporary hair loss, temporary reduction of red blood cells, white blood cells, and platelets, loss of appetite, taste change
• Vincristine - anti cancer drug; side effects can include abdominal cramps and numbness or tingling in the hands and feet
• Cyclophospamide - anti cancer drug; side effects can include nausea (I'm sensing a theme here), temporary reduction of all those useful blood cells, temporary hair loss, bladder irritation
• Mesna - given to counteract the above's side effect of bladder irritation
• some indecipherable antibiotic
• and finally! an anti nausea drug!

So today he signed the usual "medicine is an art, not a science, but we think we know what we're doing" form and last I heard they were trying to pry his dorm key out of his hand. That's gotta hurt. I hope he can take a course or two while he's in treatment. Look, Chase, they offer Spanish! and a bunch of other possibilities too.