They got mail!

Wow - y'all are fast! The mailman knocked around noon today and brought some mail and a care package from a couple of Chase's friends. At least they were up ;-). What's the first thing Chase grabbed? Not the candy or the toys, but the stress ball:



Okay, being back with Mom isn't the worst thing in the world...just think, Grandma and I could be there too. But dwelling on today's radiation session is making him all gloomy so they're heading out for a walk in the surprisingly nice weather.

It'll get better. Eyes on the prize. (insert additional platitudes here).

One treatment down - 19 to go.

If you've seen Chase's AIM "away" message, you'll know that "Radiation is the worst experience ever!" He's...not looking forward to the next 4 weeks. Actually, if he had his druthers, he'd head for home and take his chances that the tumor comes back. Thankfully he has neither keys nor credit card.

Today was uncomfortable (understatement). The first thing they did was radiate his brain. The face mask still had rough edges and the face cushion was positioned so he couldn't breathe well. When that part was done, he spoke up and they did tape the rough edges and reposition the cushion for the rest of the session. His spine is long enough that they have to radiate it in 3 sections, which requires precise adjustments - don't want to do one thin "slice" 2 times and miss another. It just sounds like a lot of fussy, time consuming work. Bleah. Hopefully tomorrow will be better (and faster!)

Here's his brass brain shield:

And here's the 3D acrylic brain form:

Pretty neat stuff, but I'm not the one getting nuked.

Last day before radiation begins!

I took down a "marble madness" kit last week. There were lots of parts; cables, gears, and a chain drive motor to bring marbles up to roll down slides to the bottom to begin again. I figured it would be interesting to put together as well as a good time waster.



Well, it certainly perfected the time waster part, since the chain was just the wrong length to actually, you know, work. So I think he used it for batting practice instead.



I need some better ideas.

But he has school work, his guitar, DVDs, and the gym to keep him occupied. Hopefully the weather will change soon or Houston will take over Seattle as the rainy city.

Speaking of rain, how 'bout these parasols?



How cool is that? A Houston artist took black and white MRI brain scans from a medical book, colorized them, printed them on fabric, and made parasols with the fabric. They've been arranged on this historic house in downtown Houston near Minute Maid park. Judith took the picture above, but there are more here, and there's a full description of the installation here. It's definitly on my "to do" list when I go back to Houston. I'd love to see it all lit up at night, too.

Good luck tomorrow, Chase!

Judith and Chase seem to be spending the day at MD Anderson today. I wouldn't expect it to take this long to get a Vincristine shot, but they had to get an X-ray to find his port location, and an IV team to stick him. Chase asked the nurse if she couldn't just feel the port and stick it herself (like they did at UNC), but she said "I need to keep my license - I have two fat cats at home that need to be fed". Heh.

So he's been finding games on his phone and trying the 2 minute free trial, then borrowing Judith's phone for that 2 minute trial, then finding another game... Unfortunately, there are no magazines in the gift shop that he wouldn't be embarrassed to be seen with and he's in the pediatric part of the hospital so there's nothing exciting there. Judith offered him the Highlights magazine but got "the look".

They're having trouble with their internet connection at the apartment lately, and I'm not there to troubleshoot if it's the cable or the router (since neither computer can connect, I can't blame that). Of course the cable company says it looks fine on their end. It worked just okay when I was there (kind of like my car - whenever Dad was around it wouldn't make that funny noise). They need to find the Memorial City Mall right off I-10 for the nearest Panera Bread Hotspot

For those who have asked, Judith and Chase's address in Houston is:
2400 Westheimer Rd.
Apartment 222E
Houston, TX 77098

Somebody send them a map...

I really did plan to blog last night, but I started a game of Bejeweled 2 and next thing I knew I was at level 21 with 303,025 points, 4 spinning balls...and it was 3AM. Oops. But that's another time waster for Judith when Chase is napping in the coming weeks. I know it's quite an adjustment for her to go from busy mom and teacher with basically 2 full time jobs, to sitting in a strange city without her usual mile long "to do" list, her friends, her husband and other son, or her dog! Thankfully she's pretty good at exploring (and getting lost...er, misplaced) in Houston, and she has my phone number to be her own personal mapquest when that happens ;-).

And she has Angel Debbie who has lent them not only the car to misplace themselves in, but offered tickets to a (checking my notes) Houston Rockets vs. Denver Nuggets game:



Too bad Houston lost in overtime, but Judith said it was a very exciting game and they had great seats. Debbie also got them 4 tickets to see the Globetrotters in early February, so there's some scrambling to see who can fly down from NC to hang out that weekend!

They bumped up Chase's first treatment to this Thursday, the 25th (instead of the following Monday) which should allow him to bang the "I'm finished" gong on 2/22, if all goes according to plan. He wants to leave that night for Chapel Hill, but someone has to pack up and haul all their stuff home. Hey Mom, wanna go to Houston in late February?

Judith and Chase have an angel looking out for them in Houston. Here's a picture of Chase, Debbie, and Judith in the apartment she arranged for them, just a few miles from the Proton treatment center.



After just 2 nights sharing a room and a bath, they were both quite happy to move in to the 2 bedroom, 2 bath fully furnished apartment. I just didn't realize how much "stuff" it takes to furnish an apartment, but besides the beds and sheets, the sofa and coffee table, the dining room table and chairs, there were trash cans, pots and pans, boxes of tissue, pictures on the walls, plants on the tables, :: deep breath :: shower curtains, hand soap, dishwashing detergent, kitchen towels and a sponge, knives, forks, spoons, spatulas, a can opener, a corkscrew, a vacuum cleaner... (okay, there were no scissors, but everything else was there!)

So now they've got a bit of room to spread out instead of just getting on each other's nerves (oh come on, you know it happens). Judith got high speed internet installed and I brought our "travel" wireless router so they don't have to try to steal a connection off "smoooth operator" (really, that was the name of the only unsecured wireless network in range). It's supposed to be for Chase's studies, but it's really so Judith can surf YouTube:

My last night there the weather cleared enough so we could meet some friends of mine, Lynette and Joey, who picked us up and took us to Taste of Texas for some absolutely fantastic steaks and good conversation. And leftovers... How was that cheesecake the next day, Chase?



Before I forget, Judith sent me links to info on Dr. Woo, Chase's radiation oncologist, and Dr. Ater who will be watching over his blood counts and finishing up his chemo (that one remaining Vincristine shot).

They joined a gym today, so that should help Chase get rid of some energy. Hey, at least he still has some!

Like I said, we got a nickel tour of the Proton center, guided by Dr. Woo (really!) We got to see one of the actual treatment areas (below). The table Chase will have to lie on, face down, is where the blue things are sitting. They have individualized props/braces for everyone, but he says it's none too comfortable, and he'll have to stay very still.

The nozzle for the proton beam (shown on the left), can rotate fully around the patient with millimeter accuracy. The technicians can see and communicate with the patient via closed circuit TV.

We also got to see the machine shop, but I didn't get any pictures there. That's where they create the masks (to hold the patient's head steady) and, hmmmm.... templates? for the Proton treatment. It's a pretty time consuming project, which is why Chase won't be starting treatment for another week.

The doctor marks the necessary treatment area on each MRI picture, the computers do their magic, and a computer guided machine creates a couple forms. One is about an inch thick piece of brass cut through with an outline of the tumor (or in Chase's case, the outline of his spine and the outline of his brain). This keeps the radiation from spilling over onto healthy tissue. The second piece is a thick piece of acrylic, machined to the shape of the tumor. Dr. Woo explained that the proton beam travels a specific distance before expending its energy, but once it goes through the acrylic, it can't go as far. The more acrylic in the way, the shallower the proton beam goes. Confusing, yes, but the forms look cool, and Chase will get to bring his home when he's finished treatment (oh no, take another suitcase, Buddy!)

At any rate, below's a picture of a mask (used for someone lying face up), and some of the acrylic forms for a spine (top) and brain (which you really can't see, below). The thinner brass plates are underneath each matching acrylic forms.
The above photo's clickable, if you think that will help! There's also a video on the MD Anderson Proton Therapy center page (look for streaming video toward the bottom of this page).

More later...

Instead of waking Judith up with a 2AM phone call to tell her I finally got home, I'll toss up a picture or two and promise more tomorrow when I'm actually coherent and awake. With all the bad weather between Raleigh and Houston, it took marginally less time to fly than drive. Not that I would have preferred driving! I sat back, read my book, and munched on M&Ms for dinner. Judith made me take them!

This pic was taken of their "cancer free" celebration, before Chase and Judith packed and left for Houston.

Here's a birds eye view of the Proton center. It's clickable. We did get a fascinating nickel tour of the facility and I'll put up photos with explanations (as I remember them) tomorrow. Well, today. Later. Much.

Did we end up in Boston after all?

It's COLD here in Houston! And much like the expectation of an inch of snow will paralyze us in NC, the dire predictions of freezing rain shut down parts of Houston (including some schools and roads), yet nothing fell. At all. I heard parts north of Houston did get some ice, though, and we're still predicted to get a blast tonight. We'll see.

Right now Judith and I are hanging around the Proton center here at MD Anderson while Chase is having his simulation CT scan. That's quick! Tonight he'll get a 3-D MRI of his brain, and a week from Monday he's expected to start treatment. Until then he has appointments for bloodwork and his final Vincristine shot, and an opportunity to bug Judith daily (more likely hourly) to allow him to fly home until the 29th.

We got the grand tour of the center, and I'll have some pictures later (this place is well equiped but still, this computer can't read my camera card). It's very nice and bright, and all the folks we've met have been very friendly and knowledgable too. Bored as he'll be, I think this is the right place for him.

He'll have his whole brain and spine treated, with a "boost" to the tumor bed for the best chance to avoid a recurrence. Twenty treatments in all, so that's expected to take 4 weeks. Counting on my fingers, he should be home by the end of February. Don't hold me to that - things always seem to change...

Will it fly?
After the suitcase contents juggling Judith and Chase went through at the airport today, John's making sure my suitcase isn't over 50lbs. Whew! That's not clothes (I'm only staying 3 nights), but it's Mom's fancy spare bed, sheets, and comforter. A good night's sleep is important!

I just talked to Judith (when I could hear her through the yawns). Their flights were fine, and her new Houston friends Debbie and John met them at the airport and got them safely to the hotel. After dinner (and ice cream), she's ready to snuggle up to Buddy's parting gift - a "Buddy Bear" - and get some sleep. Awwwwww...

It's going to be a long month for everyone, I'm sure, with the family split up, but Debbie seems to be determined that they'll have as good a time as possible while in Houston. Don't let them have too much fun, Debbie, we want them back when they're done!

ALL CLEAR!

Dr. Gold just called with Chase's MRI report. "Everything appears clear and normal"! Fantastic!

Yes, Chase, you still have to go to Houston. Well, we knew that anyway, but Dr. Gold said now's not the time to let our guard down (but still - fantastic!) He also gave Judith the name of the head of pediatric brain tumors at MD Anderson, who's a good friend of his, and who will follow Chase while he's down there. Blood tests, his final Vincristine shot, and whatnot.

Besides being good news (did I mention the fantastic news?), this means he'll probably get the shortest of the radiation treatment options, at about 3 1/2 weeks.

I've been scrolling through the pics some more, and I find this fascinating. Or creepy. But it's all good!

Smile!

So many pictures...so little knowledge. Dang. Chase had his 2+ hour MRI tonight. He didn't get an actual report (Friday night, not critical, need I say more?) He did get a CD full of indecipherable pictures to peruse for the next few days. Actually, he's to hand deliver them to Houston on Tuesday, but I'll peruse them for the next few days! He said he didn't mind. So here are a few for you!

Here we see his head. And a bit of his nose, mouth, and tongue. There's a brain too. Looks fine to me! Oh, I'm sure the doctors know what they're seeing, it's just me who's frustrated.

I just thought this was a pretty view from the top.
Not anywhere near where the tumor was, but it looks neat.

I do wish I could learn what all this stuff means. Without having to go through years of school or anything time consuming or expensive like that...

This is the back of his head - yup, those are his ears off to either side.

Chase and Judith will be spending tomorrow packing for their month or so in Houston. How do you pack for a month??? Pack for a week and plan on laundry, I guess. I don't know if we'll have any news before Tuesday, but if anything interesting happens (like an actual report on this MRI), I'll blog it right here.

Now there are three heading to Houston - Chase, Judith, and me! No frequent flyer miles needed after all - Judith sent me a link to some cheeeeap Air Tran deals.

So Judith's happy, John's sad, and the cats will be whining. A lot. Go with your strengths, kitties. And John.

Mom always said that after a few days, fish and guests both stink. Thankfully, Air Tran's deal allows me to stay just until Thursday. I can be Judith's "brains" and an extra set of ears for Chase's first appointment Tuesday morning, help them get settled in the apartment someone's generously providing (I'll bring the wireless router!), and maybe even find a good Tex-Mex place before heading for home.

Chase's 2 hour MRI is scheduled for Friday - tonight - 8PM! We expect a good report. Pretty please...

Not too much dust on the blog - it hasn't even been a week!

Now on to the next phase - Proton radiation at MD Anderson in Houston. We hope. Maybe I'm the only one still holding my breath about the final okay from the insurance company. Judith's forging ahead, and Chase is...well, I'm not sure he's too concerned either. Mostly he's making the most of his time left in NC before flying down to Houston on Sunday. He's probably also trying to avoid thinking about his next MRI, scheduled for Friday at 8PM. Or maybe I'm just projecting.

Chase's radiation doc sent some pathology slides. Every time I look at stuff like this I think I'll be able to make some sense out of 'em.

Nope, not this time either. Good luck y'all.

I'm trying to figure out if I should also fly to Houston and be Judith's "brains" for Chase's first appointment down there. I'm sure they'll do fine (she's gotten much better at parsing doctorspeak - really!), but I can help her retain stuff and I'm pretty good at google. If I don't go, who would do the blog? But if I leave, my husband will just work even later hours than usual, and then who would the cats whine to for food?

There are no frequent flyer seats back until the following Sunday. Can Judith and I spend a week together without turning into sparring siblings? Will Houston have enough chocolate?

Pictures from his final (full) day yesterday. He got out this morning, but ended up napping most of the day. Not a side effect of chemo, but because the nurses kept him awake all last night playing UNO!

Here's the door art they all signed for him - quite the souvenir:

Chase's self proclaimed "brotha from anotha motha":

Lots of cute nurses:

The artistic(?) shot. The guy in the back...needs to get out more.
Yes he really wanted to pose that way.

All pictures are clickable - click 'em to enlarge.

MRI scheduled for Friday the 12th, at 8PM.

:: thinking positive ::

Time to celebrate!

.:*~*:._.:*~*:._.:*~*:._.:*~*:._.:*~*:._.:*
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bbb`bbb\bbb%bbbbb\bbb*bbb+bb^bb bb
bbb/bbbbbb}bbb~bbbbb/bb^bbb~bbb#bbb
bbbbb+bbbbb-bbb^b*bb-bb b#bbbbb{bbb
bb~bbbbb^bbbb*bbbb.bbb}bbbb>bbbbbbb
.:*~*:._.:*~*:._.:*~*:._.:*~*:._.:*~*:._.:*


Thus endeth my lame efforts at ASCII confetti.

Stop laughing!

Today, er, yesterday was Chase's last full day of Chemo, so there was much rejoicing. And picture taking. And more picture taking. And more with this camera, and some with that one... Now if blogger would actually let me post pictures tonight, I'd do so, but that will have to wait until until it's fixed. Meanwhile I'll be working on the red-eye reduction. Really, do they keep y'all totally in the dark there? Wow...

Judith, Mom, and I talked quite a bit with Chase's radiation oncologist tonight (mouths "sorry" to his 6 year old daughter waiting impatiently at home). He feels confident that Chase will do best with the Proton radiation down at MD Anderson, and is following up with the insurance company, still proceeding sslloowwllyy through the approval process.

Chase needs a final 2 hour MRI before the docs can decide just how much radiation treatment he'll need. If they see "complete response" (no sign of the tumor), he'll need just 3 1/2 weeks of daily treatment in Houston. If there's still something hanging around, it'll be more. With his 75% reduction after the first half of chemo, we hope/think/pray he'll have that complete response.

Then we break out the real confetti!

After a bit of back and forth (and a little wangling from Judith), Chase is back in the hospital for his final chemo. Yeah!

His numbers didn't bounce back as quickly as last time, which I guess is understandable, but still... The first doctor who reviewed his labs tried to send him home, but Judith got a copy of the report, noticed it was just slightly out of range, and sweet talked Dr. Gold into letting Chase stay and start chemo. Heck, they'd already started the fluids - hate to waste a needle stick!

Chase is such an old hat at this now he wheeled his IV pole down to admitting and got himself registered while Judith traipsed back and forth to the car a couple times to unload all their stuff. He's back on the 5th floor of the Children's hospital again, so he'll get to bug all his favorite nurses one last time.

I last talked to Judith at 7PM and they still hadn't actually started the chemo, but I trust by now the day's dose is done. He'll be in tomorrow for sure and he may be in a third night, depending. Last time he got out after two, though, so we'll see. I know Chase (along with everyone else) is ready to get this DONE!

Christmas was fun. Now, not so much. First, the fun...


Yeah, this probably looks funny to the three of you who use 800x600 displays, but I wanted to try out using a table. A very, very basic table, but I like it anyway!

Back to the post-Christmas letdown... Chase's bloodwork yesterday was very bad. His ANC is back down to the dreadful .2 so he wasn't able to start his final chemo today as originally scheduled. His next target date is January 2nd. In the meantime, he's home in Greensboro trying to act like a normal kid on Christmas break, which means heading out to visit friends and such.

"Get back in here and wash your hands!"

No, he didn't catch anything major the last time his ANC crashed, but that doesn't mean he won't this time, something he won't deign to consider. If he thinks back, though, he did have that skin infection that added 2 nights to his last chemo session.

Purell anyone? Make that Purell everyone!

Merry Christmas!
Judith promised, in her copious spare time, that she would take a picture of the family in front of the tree for me to post in the blog. Since that has yet to appear in my inbox, I improvised!

Why yes, I'm very, very bad at photoshopping. It's more like photo chopping.... But the sentiment is there - Merry Christmas! And it will be a good one!

If this doesn't remind her that she needs to drag the camera out and make everyone smile, nothing will.

Chase's last blood tests were, according to the nurse, not too bad yet. Interesting choice of words, but nothing was tagged "CL" this time, which is good. His ANC was a relatively healthy 1.5 (normally greater than 2.0), rather than the .2 that spooked us all last time. His next test is around the 27th, and he should be going in for his final chemo on the 28th, or thereabouts, then on to Houston for radiation.

But enough of that for now - let's enjoy the season!

Note to self: Dr. Pepper has a lot of caffeine! Buzzzzzz.... But at least I got this blog and some more wrapping done!

Not a heck of a lot to report, but yes, we're all still here. Frantically shopping & wrapping (or is that just me). Chase did mention he enjoyed a jam session - he on his guitar and a friend whose name escapes me on a mandolin.
Is this the video, Chase?



I guess not. That guitar player has way too much hair!

Although Chase is losing even more hair, he swears he's feeling back to normal. Bloodwork Wednesday will tell the tale. The good thing is that he's getting it drawn near home in Greensboro instead of having to make the trip to Chapel Hill. The bad news is, who knows when he'll actually get the results.

So far he's still hanging on to those eyebrows and lashes, but we'll always be able to tell this year's Christmas pictures from the rest!