Grandma made me do it!

I turned on the visible sitemeter. It's been on, but not visible, since last Sunday sometime. Not many people comment (I think blog comments are awfully public anyway), so this was a way for me to see if the blog was actually useful. Over 2000 visits in less than a week - I'd say someone wants to see what's up with Chase!

I accidentally set it to show numbers briefly yesterday, and Mom (Chase's grandma) now insists that it stay on. What Mom wants, Mom gets. I think Judith inherited that gene...

It is rather interesting to see where the hits are coming from. I didn't spring for the upgraded sitemeter, so my stats are limited, but I could see that at first a great majority of the hits came from facebook, and from a wide variety of college campuses, mostly in NC. :: waves to all Chase's scattered high school friends :: Now most hits are not being referred, which means email or bookmarks, I think. Geographically, again, most hits are local to NC, with a smattering from NY, CA, and FL :: waves to Mom's family and friends :: Someone from New South Wales, Australia has visited a couple of times :: waves to our unknown Aussie ::

There are no ads to get credit for, so no hitting the blog to get the numbers up, Mom. This is another one of those hats I wear that doesn't come with a paycheck. Dibs on the Hershey bars though!

Last night Chase got to participate in Ragsdale High School's homecoming court, which was, in a word, "awesome". He also made sure to pass on the word to me that his date was "beautiful". I have a suspicion he's going to pay for that remark...

He'll be staying overnight in Chapel Hill with friends tonight, after hanging around with and watching the UNC baseball team play tonight. I'm not sure what he does/did there, but they're being awfully nice to the lowly freshman. I saw the bat everyone signed back when he was in the hospital; that's quite a keepsake!

Buddy and Jacob stayed home and let Judith drive Chase to Chapel Hill. I'm sure that had nothing to do with the HUGE HDTV loaner someone kindly dropped off this afternoon. Once they pick their jaws up off the floor, they'll be firmly planted in front of it for the duration of the sports season, which means...um, forever? Let Chase handle the remote occasionally, okay?

So, on to the not so fun stuff. Chase has an appointment with the Oncologist Sunday afternoon to map out a treatment plan and discuss second opinions, etc. He'll also get a port put in later this week, probably similar to this type. A port will make chemo a little easier, since they won't have to put in an IV each time. It also makes this whole tumor thing seem quite a bit more real.

Hey, since just mentioning an HDTV in this blog made one magically appear, I'd just like to mention that this computer I'm slaving over writing these blogs is over 3 years old and getting a little cranky ;-).

Just the other day, someone asked my sister what I do, and she breezily declared "Nothing!" That's not true at all. Why just yesterday I consulted my lawyer to have a benificiary removed from my will. :: ba dump bump :: In truth, I wear many hats, but most of them don't actually come with a pay check.

As the family's Chief Interpreter of Medical Parlance (work with me here, people), I feel I am uniquely qualified to translate this article so that even my sister can understand it.

Primary intracranial germ cell tumors are rare. They account for only 2-5% of all CNS malignancies, with only 50 new cases diagnosed per year. The most common subtype is the germinoma, representing at least 50% of these CNS germ cell tumors.

We always thought Chase was one in a million, but I think we're going to have to increase that latter number, with only about 25 new cases of germinoma a year here in the US.

The mortality rate is minimal for germinomas.

My interpretation - YEAH!

The best survival and least long-term morbidity appear to be achieved with a combination of both chemotherapy and radiation. The ideal regimen has yet to be defined and is limited by the rarity of this tumor.

It's still going to be a tough slog.

Important long-term sequelae and complications of cranial and craniospinal irradiation include intellectual deterioration, endocrine dysfunction, hearing loss, growth arrest, marrow suppression, damage to the gonadal organs, and a cumulative 20-year likelihood of a secondary malignancy, estimated at 12%.

Chemotherapy also warrants careful consideration and is prone to causing undesirable adverse effects. Cisplatin is traditionally associated with nephrotoxicity, ototoxicity, neuropathy, and sterility. Etoposide is associated with an increased risk of secondary malignancy.

These two paragraphs are the bad news. Radiation and chemo can cause damage, both short and long. Kidneys, hearing, fertility, and the possibility of cancer down the road. This is where his age works against him, since he has a long time for this damage to manifest.

Most cognitive deficits in the subjects in this study were attributed to a baseline insult from the location of the tumor at the time of diagnosis.

Isn't medical jargon colorful? Baseline insult. So, since Chase had no damage to his brain before the tumor was discovered and the pressure was reduced, chances are he won't have any long term damage. He can still run for President (and I can continue to believe he's nuts!)

I hope this isn't too much information, but as the family's ChIMP (see above), I felt it was my duty. And if the oncologist doesn't call soon, I can also fling poop.

Still waiting on a call from the oncologist. I'm sure he'll call soon...

:: checks for dial tone ::

Meanwhile, Chase's clothes hitch hiked their way home from his Chapel Hill dorm (sniff). Thankfully, they picked up the laundry fairy along the way (much obliged - you know who you are). I hope Chase can find space for them in his room before the yard sale signs come out.

:: checks for dial tone ::

Teenage boys don't show anxiety the same way adults do. He managed to go out to lunch with friends. And play video games.

:: checks for dial tone ::

Hey Judith, next time you leave Mom's house, remember, the milk goes in the fridge. Ewwww...

:: checks for dial tone ::

I'm sure he'll call soon....

The answer to all your questions!

Uh, we don't know that yet.

Oh, you wanted to ask the questions first? The answer's still the same.

When does Chase's treatment start?
When will Chase be back in school?
Will Chase ever be our nation's president?

Okay, the answers as I know them are 1) probably soon, 2) hopefully by spring, but it may be summer, and 3) that's still his aspiration (I think he's nuts, though).

This morning was spent sleeping in, avoiding questions, and playing video games with his brother. We pulled him out of school for this? Seriously, it'll take some adjustment, especially on Chase's part, and we still have more questions than answers. For almost all of the questions, the answer's still up there on line two. Dang.

The one thing we've heard is that most likely he'll have to deal with both chemo and radiation treatments, either concurrently or sequentially.

I'm afraid Judith is now compulsively organizing the snacks in the gift baskets and I worry that she may soon be running a concession stand out of their house. Drop by if you're hungry. Just remember - the answer's still up there on line two.

Are you there God? It's me, Aunt Beth.

THANK YOU!

Chase and friends were hanging out in the ICU waiting room early this afternoon, cooling off after a short stroll outside, when the nurse came to nab the family and take us back to his room. The good news - he's released to go home. The better news came when Dr. Ewend came to tell us about his diagnosis - germinoma. From the info we've gotten, if he has to have a brain tumor, this is the one he'd want. It's very responsive to radiation and treatment has a very high sucess rate.

Judith was so thrilled, she asked Dr Ewend for a hug. She got her hug, but I had to give up my extra special all the way from Siler City Johnson's cheeseburger for it. :: sigh :: The sacrifices we suffer for family...

We won't know his treatment plan for a up to a week, but Chase will likely have to deal with radiation and/or chemo for the next couple months, and he'll be dealing with Chapel Hill withdrawal; missing school, missing friends. He'll be in Greensboro for now, but that may change too. I fully expect him to be the stereotypical grumpy teenager and milk this for all it's worth (how long before he wears Dad down for an HDTV?) Even though he won't be going back to school until at least January, I hope he'll have enough friends around keeping him out from under foot until he's back to the "real world".

Thanks to all who've visited, called, prayed, and kept us in your thoughts; brought good food, junk food, and mindless entertainment. It's been much appreciated! Hugs and kisses to those invisible volunteers who've dealt with the paperwork, the fridge, the dog, the lawn, and the kid who didn't quite know what to do about all this (did any of us?) Thanks, too, to the nurses who made Chase's stay in ICU a bit less unbearable, although I don't think he ever collected on that promised sponge bath. Judging by the lack of patient activity, I'll bet you don't often get hit on by patients in the Neuro ICU...

We'll keep updating as news arises - hopefully all cheery updates!

Tuesday, 2:30pm - CHASE IS GOING HOME TONIGHT!!!
Yepper-rooni... Got that word just a little bit ago. The doctors have explained to the family that the tumor is GERMANOMA (sp?) ..the MOST treatable kind of cancer. So, plans are now underway for the treatment process. BE STRONG..one and all!!! We will battle this with Chase as family and friends. Let's continue to undergird his treatment with prayer and encouragement.
He so appreciates all of you. Now we need to go find a trailer to haul home all the blessings you have brought to him and us..the family.

Uncle Mitch in Knoxville

Monday, October 9th, 11PM

It's 11 O'Clock already?

I have to stop ragging on the pathologists, I guess, since Dr. Ewend says they're doing an excellent job with the small amount of tissue they had to work with. Because there's not enough to do all the tests they'd normally do, they have to proceed more slowly, making sure they're logically travelling in the right direction, because they really don't want to put Chase through another operation (envision Chase nodding emphatically here). So, we may have results tomorrow afternoon...and then they'll devise a treatment plan for him. If they still can't decide, he'll grudgingly have the biopsy on Thursday with results to follow...sometime.

But at least Chase had a fun evening. Since the monitor was removed, he was disconnected from all the machines (except his laptop, natch). So when a bunch of his friends dropped by, he was free to change into street clothes and ramble down the hall to Wendy's for dinner. Dr. Ewend said they could take turns in the wheelchair, but no drinking and driving!

Chase looked quite dashing in his T-shirt, shorts, thigh high compression stockings, hospital socks, and sandals. A few bald spots and dozen stitches in his head completed the picture. Too bad it's not closer to Halloween or he could have gone door to door and added to our candy collection.

The story on the private room changed again - he's supposed to be moved tonight, but I'll believe that when I hear an actual room number. Soon, though!

~ Yeah, Aunt Beth again....

Monday, October 9th 4:30PM

Open 24 hours!

Sorry to anyone who dropped by after dinner last night. Chase went to sleep early because he was scheduled for a CT scan in the morning. Early. Really early. Would you believe 4AM? The good news is that other than that nasty and still unidentified mass, his brain looks good.

What's a day in the hospital without a little drama?

10AM - time to pull the plug - in his head. The monitor for his head pressure is ready to go, so they poked in a little local anesthetic in prep for pulling it out. One of his eyes abruptly dilated, so off he went for yet a CT scan. Within an hour he was back in the room and we could breathe again. From what I gather, the anesthetic probably dripped right down into his brain and messed with a nerve down there. Whew! A little adrenaline's good for the heart, right?

Thankfully the next attempt at removing the monitor went fine (although Judith still has marks on her hand from Chase's grip ;-). Guess that wasn't too comfy, anesthetic or not...

We're still waiting for the pathology results. One more stain overnight and they hope to have a definitive result tomorrow. If not, he'll have to have another biopsy, this time of the lesion on his spinal cord in his neck. Either way, he'll have a lumbar puncture to check for stray cells in his spinal fluid. We want a negative on that one!

He hopes to be moved to a private regular room tomorrow (after one more sponge bath from you know who ;-). His room will probably be on the pediatric floor, :: snicker :: but it's supposed to be nicer (and newer) than the adult floor, and Chase will be thrilled to have a private bathroom with an actual shower! And a fresh set of nurses for us to annoy!

~Aunt Beth, still filling in for Chase

Sunday, October 8th, 9:00PM

Ready for a jail break? Chase is ready to get out of here!

He's pretending to be too shy to write his own update, so I'm writing what he tells me. Or pretending to anyway, since he's too busy now with his laptop (AIM anyone?), his iPod, not to mention the TV. Did you know there's always a game on TV on the weekend? All. the. time.

There are various beeps he's learned to ignore, reasonably good hospital food supplemented by Wendy's down the hall (really!). There are some strict nurses, and some nice nurses, including one who seems to fall under the heading of "niiiiiiice" (just ignore that quickening heart rate monitor). Seems like the neuro doctors are good, but those pathology docs need to get off the golf course and get those results back - stat! Now we're hearing maybe Monday, but maybe not until Friday?!? Yikes!

So Chase's head plumbing is working very well now (yeah!) so after another day, they'll pull the monitor out. He may not have too much time left in the hospital to plan that jail break after all.

We have no real idea what his treatment plan is after that, but visitors are a welcome diversion.

Chase - stop googling "brain tumors"... However, you may browse to
this page, and notice your surgeon's picture is on the masthead. You're in good hands.

~Chase's Aunt Beth