Thursday, October 30, 2008
We met the pediatric oncologist, Dr. Goodman, who is 10 days away from having a baby. Irrelevant, except that we'll be seeing her partners for a period of time, and planning with them as well, for the most part. She will be consulted, from what I understand, but not present. Without replaying every bit of the 2.5 hour appointment, I'll give you the basics.
- JD will be having an MRI of his spinal cord tomorrow to make sure that it has not spread. We will have the results of the MRI by the end of the day tomorrow.
- The next step will be surgery #5 to remove the tumor. After Tuesday's (10/28) appointment, we thought surgery was not an option... It is no longer an option as a 'simple' fix-all, but will make further treatment much easier. It's easier to treat nothing/minuscule amounts than an eyeball sized tumor. And it gives us more time.
- From there... we wait on the pathology of the tumor. This will ultimately determine the plan of action. They said it would most likely be 3-4 weeks following surgery before they started chemo (assuming that's the course of action taken) to give JD time to recover.
Really, it's hard to give any definite information, as we have none and will not have any until we have the pathology of the tumor. Like I said, we'll know the results of the spinal MRI tomorrow (BE PRAYING THAT IT'S CLEAR!!!!), and hopefully we'll have surgery scheduled as well.
A few things of note, and forgive me if I'm using incorrect terms or my wording is wrong... after all, I was only an aspiring nurse before I, ahem, became a stay-at-home mom. :)
The type of tumor that JD had/has is called a pleomorphic xanthoastrocytoma, PXA for short. This typically is a slow-growing, low grade (benign) tumor. I don't fully understand how it all works or what it means, and I don't want to look at anymore tumor-related information tonight... but the pathology of his earlier resections showed 6-8% dividing... making it a low-grade, slow growing tumor, like expected for the type. This last resection (10 weeks ago) showed 20-30% dividing- a significant increase. The dividing has something to do with the tumor cells (duh), but I don't know if it deals with how many or how quickly or both or what. Sorry. Long story short- it is no longer acting like a low-grade, slow growing tumor. It is growing quickly and aggressively, acting malignantly, and so we must treat it as such. Thus the reason for quick surgery, followed up with chemo and potentially more radiation. We just don't know details of that part yet.
Please, please, please... just keep praying. We've got a long, rough road ahead of us. I wasn't prepared for the emotions I'd feel reading a little kids handwritten 'Cancer stinks!' scrawled on a bulletin board in the cancer center where our consultation was, or what I'd feel seeing a poster for the ImTooYoungForThis.org website. It all seems surreal, like it's someone else, something else... not my little brother. But then, I realize, this is real... and it is hard. Pray for wisdom for the doctors and my parents as they make decisions regarding the care he will recieve, for strength for us all, peace, comfort... And thank you, again, from the bottom of my (and my family's) heart. Your love, kindness, and prayers do far more than you could ever realize.
Tuesday, October 28, 2008
Despite removing all tumor visible by way of MRI, etc., the tumor has returned, and is bigger than when they removed it 10 weeks ago (about the size of an eyeball) . That was his fourth surgery, and most invasive. He also has gone through 6.5 weeks of radiation. According to the doctor, they've exhausted these possibilities. The tumor has returned after each surgery, and has grown back despite the radiation... The type of tumor JD has is very rare, and the situations of recurring like it has done, even more so. There are only a handful of instances like this in the world, apparently...
Needless to say, we're all pretty shaken up by this news. It's terrifying to not have an immediate game plan, to have a doctor tell you that they're just not sure where to go from here yet. The next step will be for them to biopsy the tumor, and from the info that brings, they'll go from there. He said that the tumor is no longer the grade 2 tumor it was before, but is more aggresive. So, we need to develop a plan of action quickly.
We go on Thursday to see the pediatric oncologist.
Please, please, please be praying for our family. For wisdom for the doctors on what to do, where to go from here. Chemotherapy may be an option, but we'll know more after speaking with the oncologist and the biospy of the tumor. Pray for wisdom for my parents, as they make decisions based on the info recieved. Pray for answers, for hope, for peace, for comfort.
As terrifying as this has been from day one, we've now entered a new ball game. Please, just pray. Feel free to put JD on any and all prayer chains you may know of.
Thank you to all who have lifted us up, encouraged us, helped us through the last 4 years of this, and to those who are praying now. We love you all, and are so blessed to be surrounded by such friends and family!
Monday, October 27, 2008
- Cleaned out Corban's dresser
- Sorted too small clothes, too big clothes, current clothes, PJ's, short sleeve, long sleeve, etc.
- Drug the massive tote of baby clothes from the guest bedroom to my room
- Sorted by sleeper, onesies, outfits, etc.
- Pulled out all gender-neutral items, and all white onesies and socks
- Taped off the shower, vanity, etc. in the bathroom
and, drum roll please...
- I finally primed my bathroom. Painting soon to follow... hopefully tonight, if the current coat dries in time, and if I make it awake past 7:30.
I realized a few things while doing these things though. One, my son has/had a tremendous amount of clothes. There were way too many newborn or 0-3 months items that still had tags on them, or that I had no recollection of him ever wearing. Two, Corban has a good amount of 24 month and 2T winter clothes. This would be fabulous, if he didn't wear a size 12 months. And three, I hate primer. It stinks, it's sticky, and it's stuck all over my hands, clothes, watch, etc.
We have company coming tomorrow, and while I made good headway today, there's a lot to be done before it's guest-worthy! But my son is refusing an afternoon nap (due to a late morning nap- two days in a row... I fear an end of 2 naps is around the corner....). So I'm out!
Sunday, October 26, 2008
Tuesday, October 21, 2008
Monday, October 20, 2008
My appointment went well this morning. Nothing new to report, really. I did the nasty glucose test today and could barely finish the drink. Yuck. My last three appointments I haven't seen the Nurse Practitioner that I usually see, who was the main reason I returned back to that same doctors office. I'm going to call her tomorrow and ask if she'll be seeing me anymore, or if I'm just going to have that other lady, who, quite honestly, I'm not that fond of. We'll see from there, I guess. I'm going every two weeks already, and then a month from now I start the weekly biophysical profiles. There hasn't been any indication at this point that there's anything to be worried about with the baby's heart, but they like to monitor the baby closesly at the end because of my heart condition.
Anyway- we got a really great profile shot of Baby Girl McG today, as you can see. The Ultrasound Tech tried to get a 3-D shot, but she (baby girl) had already covered her face back up with her hands. At one point during the ultrasound, she had a hand AND a foot covering her face. Silly girl. :) Silly, nameless girl. sigh. I wish we could figure out a name! We have less than 3 months to figure it out... and I think I've read every book on the market and looked at every website under the sun three times. Ah, well, it'll happen. We'll find one. Or at worst, settle on one when she gets here.
Here are names that have been on, but exed off of 'the list', to give you an idea of the style that we like:
Anyone have any great suggestions? Names you considered using? Names you like but can't use because you know someone named it, or who is going to use it, etc? If I don't know you in real life, or see you less than once a year, names you used? I'm desperate! :) Even if you don't have a name to offer me, at least say hello if you stopped by and read this. I'm still learning the ropes of this blogger business, and have no idea how to see if anyone is reading this other than by comments and those who are 'followers'. So- comment away. Oh- and thanks in advance for suggestions.
Friday, October 10, 2008
Don't let my mere 22 years of age fool you.
After looking at recipes, cooking a mediocre pot of chicken taco soup, wasting valuable brain cells trying to entertain Corban with some 'kids music videos' from PBSkids.com, we put our son to bed, and I snuggled up on the oversized-chair-with-ottoman to read a book while Jordan played some college football game on the ps2 (i think that's the game system we have). And before 9 p.m. rolled around, I was sound asleep. My loving husband threw a pillow at me and said something along the lines of "Hey poop brain, it's 1 o'clock, let's go to bed..." and I jerked awake, in disbelief that it was 1 already. My disbelief was correct- it was only 11, but I fumbled up the stairs, crawled into bed and woke with Jordan's alarm this morning at 7. I don't know what my deal was- I didn't even realize I was so tired, until my apparantely not so exciting book lulled me to sleep.
It could've been my really active day that wore me out. You know, supervising my one year old run around on mulch, watching him throw a ball on the basketball court... sitting at women's Bible study, eating lunch with friends, bouncing from Target to Target searching for that so-hot deal of Canon Rebel clearanced 75% off... to no avail, coming home, sulking in deep depression. It was a hard day. No wonder I was so tired. It was probably all of that housework that didn't get done, or the exercise that didn't happen that did me in. That's it, surely. Perhaps it was my evening of not watching Corban, as he wanted nothing to do with his Mama, only wanted Daddy. I didn't as much as change a diaper after 5p.m. Jordan took over. So you see, it's no wonder I was tired. Most responsibility was neglected or handed over, the lack of physical exertion did me in.
After 11 hours of sleep and a gas station (sorry, Grace) coffee, I'm feeling pretty good this morning. Definitely ready to tackle my busy day... of a play date, a trip to the mall to get a birthday present for my now 13 year old brother JD (daDaa as Corban calls him, as he carries his picture around the house all day), and then some quick cleaning and packing before yet another trip to Cville. We'll be in Cville until Saturday night, and then we have church Sunday, some metal concert in Fort Wayne (that I'm still trying to find a way to weasel out of.. haha), and then Monday it's off to the Pastor's Conference, and Thursday to Pennsylvania! Yesssss... I love this week!!
Anyway, my dryer just buzzed and my son is napping. That means my clothes will be folded prior to wrinkles forming. Ladies and gentlemen, I'm off to a good start...
Tuesday, October 7, 2008
7days until the Pastor's Conference
9days until our trip to Erie, PA to see Brandon and Holly
23days until Halloween, er, the Harvest Party at church
50days until Thanksgiving... which means..
51days until 'Black Friday' shopping
78days until Christmas
80days until my 23rd birthday
100days until my due date!!!
Monday, October 6, 2008
I had an OB appointment this morning, and all is well. Baby Girl McG is even more active in utero then her big brother was (uh oh), but it's reassuring to feel her flip-flopping around in there. I didn't have an ultrasound today, but we listened to her heartrate with a fetal monitor. Everything seems great!
I wish someone would've taken a picture of me walking into the dr's office though. Picture this: 6 month pregnant Mom without a stroller trying to be smart puts 14 month son in sling. Picks up overflowing diaper bag while said son is whining, bends down to pick up purse, drops diaper bag in process. Shoves paci in screaming sons mouth. Son throws paci. Pregnant Mom attempts to readjust and try again. Finally realizes the cause of sons fussing....
Or as Corban says, "booball". I'm talking NLF sized, Nike football. Yes, the one that's as big as his body. We suddenly can't leave home, and apparently the van, without it. So once again, picture 6 month pregnant Mom carrying overflowing diaper big and purse, with 14 month old son in the sling resting on her stomach which is now a shelf, with a giant football separating their two faces. Corban and I both were leaning at 45degree angles just to keep the ball up there between us. And he thought it was hysterical. And it was. Oh, what a boy.
Speaking of Corban (haha), my son has become that boy. You know.. the mean one. I'm crossing my fingers that it was a one time deal, and that it was because he was tired and didn't feel well... but he was mean to the kids in the toddler room at church on Sunday. Tackling and pinching, pushing, etc. He was running a fever all day yesterday, slept lots, and slept 13 hours at night, so I know that he really wasn't feeling good. But what's a Mom to do?! He usually isn't mean. Quite the opposite, really. But- He really is very very very very strong willed. I could give examples, tons of them, of that stubbornness, but I'll spare you for now. It just makes me anxious thinking about it. Strong willed can be good if it's channelled for the right things. I'm praying for wisdom and direction on how to do that...
Anyway, I just finished my daily bowl of popcorn, and I have a stack of fresh-from-the-library books that I am soo looking forward to reading, so off I go. Oh- one more thing though- I don't know many details at this point, but my Granddaddy was taken by ambulance to the hospital today, and is now being moved to the Heart Hospital here in Indy, and is having a heart cath done tomorrow.. if you think about it, please pray for him, and for my grandma and our family.