I know everyone is probably chomping at the bit for some kind of update. I can't do it justice so Roger will need to give the full rundown but suffice it to say it's been a rough 24-48 hours or so for Roger and Charlotte.
Here's the brief update:
First day of radiation ran late and really long.
She got nauseous and started vomiting about 1 AM.
Had second day of radiation BUT also saw oncology doc and there were concerns that she might have some kind of bug. She got admitted to the hospital so they could give her fluids and monitor her progress. Hopefully won't be admitted for long.
That's about as much as I know.
Also (fortunately) Bob and Juanita are now in Houston so Roger has some backup support.
I will let him supply further details. Last time I talked to him, he was really tired. I'm hoping he got some rest.
As for me, I'm hanging in there. Working a lot and can't believe it's almost my turn to go to TX. Had a really good meeting with Dr. Matt yesterday (always helps) and work has been going well. I've had some great angels bringing me meals, flowers, and other bits of sunshine to brighten my days.
Gotta go get ready for another busy day.
Rachel
Update:
Guess what? This one’s tipping 5 pages in Word! Rachel's post was pretty much IT in a nutshell so if you only want shells, that's all you need. Go get some coffee. If you want nuts keep reading. And go get a whole pot!
MAN! I hate it when I'm right (and I'm right so rarely I should appreciate it).
The last couple of days have been brutal. I haven't felt awake enough, or had enough free time while awake to post on CB but hopefully my little blurbs on Facebook helped some of you get at least a partial fix. Not sure I can make it long tonight. (Actually I didn’t. I had to put down the laptop and sleep. It’s now 4:45am)
So we're in the hospital. I mean the actual hospital, admitted for observation because Charlotte isn't eating and threw up four times today. including once right in front of Dr. Wolff.
But I'm getting ahead of myself.
Yesterday (Tuesday) started her proton therapy treatments and Charlotte had trouble from the start. We had to wake up at the buttcrack of dawn to try and get her to eat something before she went NPO at 5:30am. No-go. She wasn’t interested and I don’t blame her. My problem at the time (and there were many on Monday) was that she wasn’t going to get to eat all day and there is always food floating around The House. I wanted to minimize CJ’s suffering by at least getting her to eat something. As I Said, no-go.
So I let her sleep and she didn’t eat all day. It really wasn’t an issue because she hasn’t been eating much and she didn’t ask for anything. Her appointment at the proton therapy clinic was (supposedly) at 2:30pm. On MYMDAnderson.com, it actually said 2pm and, as I have since found out, the clinic had 3:30. But I didn’t know that so let’s not taint the post too early.
She slept in again and I didn’t disturb her to make the time between awake and food as small as possible. When we finally got up, we did the usual, watch a video, go downstairs, play with shoestrings, etc.
I mentioned her “stiffening up” before and it has been slowly but steadily getting worse. I was going to mention it to the Drs. at Wednesday’s appointment. She’s getting to the point that she doesn’t like to sit up. She’s also very lethargic which isn’t a good sign.
There are shuttles that go around the medical center from The House and the only one that would get us to the proton center on time for the 2:30 appt. leaves at 12:45 so we had to take that one and get there early. Not a problem, I always have stuff for her to do. She hasn’t really been the mood to do anything except be held or play with shoestrings anyway.
So we got there very early and checked in. Who knows? Maybe they could get her in early. (Writing that now I think to myself, “you silly, naïve little man.”) At least they got her in to get the vitals. Then we went out the lobby and waited. And waited. And waited…(Remember the John Houston version of the story of Noah?)
Finally, at about 3:30, I asked someone to go check and they came back and told me they were backed up (REALLY?!?) and Charlotte is up next. Well in proton radiation-speak, that could mean a long time. Most of these treatments are at least an hour long, the place has a steady flow of patients, and there are three “gantries.” The hours stack up. Which is why we were sitting there at 4pm waiting for what was originally supposed to be a 2:30pm appointment. Charlotte never complained or told me she was hungry the whole time. She was not feeling well I could tell and I just bundled her up and held her on my lap while she slept and I stewed. It was a very hard time sitting there letting my thoughts spiral around like they will do when I get riled. It also let in the “what if” demons and a couple times I just about lost it right there in the lobby. What really bugged me was that no one seemed concerned enough about us to at least keep us informed.
And then, with a lobby scattered with patients, many of whom are almost assuredly NPO (couldn’t eat), one of the doctors actually comes out and starts offering people chocolate! WHAT?!? I’m sure it was a gesture made with the best of intentions but incredibly unenlightened.
FINALLY after 4:30 (Charlotte was going on 20 hours since she ate last), they took her in and hardly anyone apologized for the delay and the sorries I got were superficial and insincere. I was livid by the time I carried her in to the Gantry that I had a hard time even talking to anyone. I wanted to break stuff, call people names, and write nasty emails. They know from before that CJ love Frosty so they had the lyrics already printed out and waiting and even that didn’t help. Charlotte wasn’t feeling great anyway so we didn’t sing. I really wanted to appreciate the scope of what was about to happen to her but I just took a couple pictures and left. Man! I was mad.
Now that she was in, I could eat something and when I went to get a snack, insult was added to injury. In retrospect, I realize this is a very silly thing to get upset over and a waste of energy but here’s where my head was at the time: In a rare attempt to eat healthy, I was going to get something other than the honey bun I got last time and realized the only thing remotely healthy was a little bag of peanuts and I just didn’t want that. I noticed anything of any “heft” was $1.25 so I stuck my $1 in and pulled out another dollar to chase but the machine wouldn’t take more than one dollar at a time. I didn’t have a quarter. Apparently neither did anyone else around me. It didn’t take $5s. There was no change machine. Internally, I blew up. My thoughts went from dark to biggest, meanest, hurricane storm cloud black. Had anyone spoken to me, or worse, asked me how I was, I think I would have just screamed in their face uncontrollably. I mean, these guys are supposed to be the absolute best IN THE WORLD at what they do and they have taken pains to make the environment as calm and “healing” as possible but they couldn’t think of a little detail like a freaking change machine or machines that take more than a dollar?!?
THEN! Noone called me back to the recovery room once she was done so it was almost two hours later (reminded of the time by my lovely wife) before I popped my head in to ask what was up. She had already woken up in the back and was getting her wits back. Talk about “when it rains it pours!” Things kept piling up so much I was beginning to think I had been set up.
Breathe. In-out-in-out
OK. Now you know how my annual freakout works. As I’ve said in a previous post, it’s turned into a monthly occurrence. I’m actually keeping a close eye on myself to make sure I’m not seriously losing it. That in itself is probably a warning sign, eh. Need to ask Matt about that. I’m doing “guitar therapy” on myself, staying very focused on CJ (once she was out of my control was when I melted down so I will need there distraction of working at Romp n’ Roll all the time) and trying to stay connected to everyone. Not doing regular CB updates takes its toll too. I’m telling you, it’s therapy.
Moving on, I did write that nasty email to MDAnderson and actually got results. They actually have a patient advocate and she filed a complaint in our name which is fine especially if they refine their policies.
OK, I said moving on. Charlotte went through her first therapy with no hitches and when I got back to her, she ate a fruit cup. The process had taken so long, we missed the last shuttle back to The House so they called us a cab. It’s not far and only cost $5 or so. I’m not sure but the woman (and her little boy) who rode back with us paid the fare and wouldn’t take any money from me. “Next time,” she said.
When we got back, they were playing BINGO and giving out some really amazing donated prizes. Charlotte wasn’t interested of course and just wanted to go into the playroom. That didn’t last long and it was off to bed. Good because we had an early appointment in the morning at the main hospital. I was feeling pretty wrung out so I just closed everything up and was asleep by 10.
Now there are few sounds in the world that strike fear into the heart of a parent than the tell-tale gurgling of a child about to throw up; especially in the middle of the night. I heard those sounds at around 1am. It yanked me from my sleep but I wasn’t fast enough with the bucket it went on the bed. I held her up, let her finish, and then got her cleaned up and gave her a zofran. I also stripped the bed and started a late night load of laundry (Man, is THAT a nice perc of The House.)
She threw up again about 4:45 and once more at around 6 but there was no fever and I figured it was just a little side effect of the proton therapy. I think in the end might have been part right. After the last episode, we just got up and got ready.
We walked to the main hospital because for some reason, CJ refused to get out of her stroller to get into the bus. No biggie, I need the exercise. When we got there, what I thought was a regular Dr.s visit ended up being an opthomology assessment. It was a bust because by now, CJ has become the most anti-social, uncooperative patient ever. It didn’t help that the eye doc kept shaking toys in her face and asking her 5 questions in a row without waiting for an answer and she asked “bad” questions at that. Rachel would have had a field day with her. Finally, I had had enough of it and ended the pointless berating telling her we would have to reschedule. My observation: a drawer full of toys doesn’t make you good with kids.
Can you tell I’m becoming disillusioned with MD Anderson at this point?
Next I went next door full of my daddy self determined to get some answers and see some people who, for some reason, weren’t communicating with us after we made it abundantly clear multiple times that we needed that. I checked in, told the receptionist that I really needed to find out what was going on with the chemo schedule and what we needed to do next. She got us squeezed in to see one of the nurses who took blood from CJ and then they put us in a room to wait for Dr. Wolff whom I had already seen running around looking very busy. I wasn’t feeling optimistic.
Then Dr. Wolff went and spoiled my mood. He single handedly renewed my faith in our purpose by coming in relatively soon, bringing his crew including Nurse Reh, who is his version of Dr. Tye’s Joanne, and did what I like second best about him (the best being that he’s a darn good oncologist), he sifted through the crap around the story, compiled information in his brain out loud right in front of us, and in a very short time, convinced me that CJ was actually dehydrated, had a bug that was probably easily treated, decided to admit her for observation and noticed the stiffness without my help. He actually said it was a classic sign of meningitis or a related condition although he said if it were really full blown meningitis, she would be a lot sicker.
He also asked me questions about what I think! Imagine that! I told him the impression I had gotten from my discussion from Dr. Vats about the tumor growing and the cancer cells in the spine. I think what I said jibed with his discussions with Dr. Vats so he finally told me what he thinks. He doesn’t think the tumor has grown but he needs the previous scan to tell for sure. Dr. Kahn was supposed to have sent it but no one can find it. Rachel is going to try to get a copy on disc to bring with her on Saturday.
(And now for something completely different: my belly makes a great laptop table!)
OK, I’m back. Dr. Wolff also suspects the cells in the spine have been there longer than everyone thinks. Another clue that it probably isn’t growing. He also said something interesting. He had mentioned how busy they were and the lack of rooms and I said I was sorry for throwing a monkey wrench into his day.
“Nonsence!” he said. "She’s a sick child, I love to treat sick children. The sicker they are the better.” I don’t think it came out quite right but I know what he meant. He’s up for it.
He didn’t want to interrupt the proton treatments because if it was actually something caused by the tumor, he didn’t want to get in the way of that. So Nurse Reh arranged an ambulance ride for us! Charlotte got to ride on a gurney through the halls and then in an ambulance to the proton center. First time I’ve ever been in an ambulance too. No lights or siren though. Oh well, I’m actually thankful we didn’t need them.
Before we left however, they hooked up a bag o’ fluids to her and she got rehydrated. Talk about a difference! She perked up and became quite chatty. By the way, she can see fine. She can see tiny pictures up close and identified pictures out in the hall from inside the room.
Day two at the proton center was like Charlotte after she poops (I just couldn’t have a post with no poop references!), completely different. We actually got there a bit after we were supposed to be there but right on time for the appointment and they rolled her right in. I carried her in to the Gantry and this time she was into the singing of Frosty (me too). She even did the “STOP!” with her hand when we got to that part. Then the happy juice kicked in and the last I heard was, ”That’s my favorite {zonk!}
In anticipation of the upcoming slumber party, I took the MDAnderson shuttle back to the main hospital intending to walk over to The House to get provisions from the room. I called my dad to see where they were in terms of getting into town and they said they were just getting ready to park at the main hospital! That was handy. So we met up, drove over to The House and I got stuff. We drove back to the proton center just in time to go see Charlotte in the recovery room. When she woke up and saw Grandpa KATIE BAR THE DOOR! I hadn’t seen that much energy out of that girl in a week. She sure loves her men. Grandma Juanita Bonita was all over her too “gettin’ lots o’ sugar.”
We got another ambulance ride back to the hospital and got settled in to our private room with shower. By the time we got here, she had closed back down and I don’t think she’s very happy to be here. Nice facilities, though. That’s another post.
Last night she had some juice and this morning she ate 4 crackers, a large pretzel, and most of a bag of 100 calorie pack Girl Scout cookies so at least something is going in.
So here we are at 8:15am, she went back to sleep pretty easily after some Blue’s Clues. Can’t wait to show her the playroom here. Pretty boss dude! Think she may need a diaper change.
Update:
A relatively short update:
The end
Showing posts with label Brain Tumor. Show all posts
Showing posts with label Brain Tumor. Show all posts
Thursday, July 23, 2009
Friday, June 5, 2009
Things are Going Very Well at Home
First off, Sorry about the lack of update. We are having trouble getting on to Caringbridge from home. Not sure why when the rest of our internet service at home works fine. Anyone have an insight into why that may be?
Other than that, things are going very well at home. Charlotte was extremely mellow yesterday and we kept an eye on her just to make sure she wasn't getting sick or something but she seemed fine. Her BM last night was very healthy!
As with the second surgery, she's now going through a bit of an "emotional" phase. Devon came by and spent some great quality time with CJ, snuggling with her, reading to her, and watching videos but she had a couple meltdowns when things didn't go exactly the way she wanted them. Like when the Sesame Street Halloween video ended. It took a moment to figure out exactly why she was bawling but we did and it's par for the course of recovery.
We went to Qdoba to get the official check for the burrito eating contest from Lisa. Everything added together, we raised $975! Thanks everyone who helped. CJ has such a following, the Army recruiter from across the parking lot actually came over just to see her when he found out she was there. A couple other people did as well.
We're very excited about the upcoming events at Romp n' Roll and in the surrounding community:
Our free week of preview classes has been received with a great deal of excitement and there are not many spaces left. I think the most vancies are with the babies class but we booked several of those yesterday.
The Ashland Strawberry Faire is looking to be a very nice change from this rainy weather. Forecasts call for partly cloudy skies with a high of around 81. Couldn't ask for a better outlook. We'll be there with face painting, crafts, and the bubble gun!
Rompy's Summer Concert Series kicks off on Thursday the 11th with Clay Mottley and the Taters. Food donations for the Central Virginia Food Bank will be accepted as well as donations for Charlotte's fund. There will also be a bloodmobile on site starting at 3pm.
Gotta go get ready for "Big Friday!"
Rog
As a followup to the last post:
There's now a sign-up sheet at Romp n' Roll for the Bloodmobile. Appointments start at 3:00pm and there's an average of 6 slots for every hour which equals 26 pints of badly needed blood. If you're available and eligible to give blood, please call the store to sign up. Think of it this way, after this, you get a 3-month break from VA Blood Services calling you every day to come in and give blood! :-) You're giving in CJ's name but not for her directly as she has mercifully needed very little. I'm sure, however, that that will change when we move into the next phase of treatment, whatever that means.
On another tangent...We're gonna pass 100,000 hits today!!! How exciting! You guys are amazing. Wish I knew how to save and print the page when it goes over.
I would like to paste an email I received from the father of a child who passed away from a brain tumor. They have a very active foundation and I would engourage you to learn more about what they do. I saw them featured on the Golf Channel while Charlotte was recovering from the last surgery.
"Reynolds family,
Thank you so much for writing on Payton’s blog and it is strange how these things happen to bring people together. Flipping through the channels late at night is something I know all to well about.
It sounds like your daughter is getting great care. We did the same as far as getting several opinions and ended up at Duke Hospital at the Preston Robert Tisch Brain Tumor Center. I was recently there and spoke to Payton’s doctor, Dr. Gururangan and he said they are working on a vaccine that may have helped Payton. I could introduce you to him if you like to see if your hospital is collaborating with Duke on any of their studies. M.D. Anderson is another top notch hospital. I have been invited to meet the president and tour their hospital soon and can’t wait.
Payton was first diagnosed with a PNET as well and after two weeks of collaboration between 5 different hospitals they determined it was a Medulloepithelioma tumor.
I know how you feel and what your family is going through so stay strong. That is an easy thing to say, but much harder to do. I don’t have any magic words that can make you feel better or to help you get through this. There just isn’t any. People always say I couldn’t do what you both did, I wouldn’t of made it through, I can’t believe how strong you are….many things along those lines…well you just do it. As you know, you just get through each day and take it on. There is no other choice. I am sure you have said to your daughter that you would take this cancer if you could. I said it every day. CANCER SUCKS. But you guys keep fighting because I am sure your daughter will.
Sorry if I didn’t make sense in this email or offended you in anyway. As much as I do it, it is still hard for me as someone who has lived through the horrors and seen the things you have seen to communicate with folks living through it now. Hang in there and let me know if I can help.
www.paytonwright.org"
I especially like the fact that many of the things in Mr. Wright's email are things we've found ourselves saying like "CANCER SUCKS!" I understand the last golf tournament they had raised over $70,000!
The ball is rolling again to get "CJ's Thumbs Up! Foundation" up and running. We hope it will be a "fun-raising" organization that will privide financial (and sometimes personell) assistance to individuals and other organizations that already do the things we were thinking of doing. We'll let you know when the tires hit the road.
So here's to 100,000 hits, the Strawberry Faire, and the Concert Series!
Thanks for everything past, present, and future!
Roger
Other than that, things are going very well at home. Charlotte was extremely mellow yesterday and we kept an eye on her just to make sure she wasn't getting sick or something but she seemed fine. Her BM last night was very healthy!
As with the second surgery, she's now going through a bit of an "emotional" phase. Devon came by and spent some great quality time with CJ, snuggling with her, reading to her, and watching videos but she had a couple meltdowns when things didn't go exactly the way she wanted them. Like when the Sesame Street Halloween video ended. It took a moment to figure out exactly why she was bawling but we did and it's par for the course of recovery.
We went to Qdoba to get the official check for the burrito eating contest from Lisa. Everything added together, we raised $975! Thanks everyone who helped. CJ has such a following, the Army recruiter from across the parking lot actually came over just to see her when he found out she was there. A couple other people did as well.
We're very excited about the upcoming events at Romp n' Roll and in the surrounding community:
Our free week of preview classes has been received with a great deal of excitement and there are not many spaces left. I think the most vancies are with the babies class but we booked several of those yesterday.
The Ashland Strawberry Faire is looking to be a very nice change from this rainy weather. Forecasts call for partly cloudy skies with a high of around 81. Couldn't ask for a better outlook. We'll be there with face painting, crafts, and the bubble gun!
Rompy's Summer Concert Series kicks off on Thursday the 11th with Clay Mottley and the Taters. Food donations for the Central Virginia Food Bank will be accepted as well as donations for Charlotte's fund. There will also be a bloodmobile on site starting at 3pm.
Gotta go get ready for "Big Friday!"
Rog
As a followup to the last post:
There's now a sign-up sheet at Romp n' Roll for the Bloodmobile. Appointments start at 3:00pm and there's an average of 6 slots for every hour which equals 26 pints of badly needed blood. If you're available and eligible to give blood, please call the store to sign up. Think of it this way, after this, you get a 3-month break from VA Blood Services calling you every day to come in and give blood! :-) You're giving in CJ's name but not for her directly as she has mercifully needed very little. I'm sure, however, that that will change when we move into the next phase of treatment, whatever that means.
On another tangent...We're gonna pass 100,000 hits today!!! How exciting! You guys are amazing. Wish I knew how to save and print the page when it goes over.
I would like to paste an email I received from the father of a child who passed away from a brain tumor. They have a very active foundation and I would engourage you to learn more about what they do. I saw them featured on the Golf Channel while Charlotte was recovering from the last surgery.
"Reynolds family,
Thank you so much for writing on Payton’s blog and it is strange how these things happen to bring people together. Flipping through the channels late at night is something I know all to well about.
It sounds like your daughter is getting great care. We did the same as far as getting several opinions and ended up at Duke Hospital at the Preston Robert Tisch Brain Tumor Center. I was recently there and spoke to Payton’s doctor, Dr. Gururangan and he said they are working on a vaccine that may have helped Payton. I could introduce you to him if you like to see if your hospital is collaborating with Duke on any of their studies. M.D. Anderson is another top notch hospital. I have been invited to meet the president and tour their hospital soon and can’t wait.
Payton was first diagnosed with a PNET as well and after two weeks of collaboration between 5 different hospitals they determined it was a Medulloepithelioma tumor.
I know how you feel and what your family is going through so stay strong. That is an easy thing to say, but much harder to do. I don’t have any magic words that can make you feel better or to help you get through this. There just isn’t any. People always say I couldn’t do what you both did, I wouldn’t of made it through, I can’t believe how strong you are….many things along those lines…well you just do it. As you know, you just get through each day and take it on. There is no other choice. I am sure you have said to your daughter that you would take this cancer if you could. I said it every day. CANCER SUCKS. But you guys keep fighting because I am sure your daughter will.
Sorry if I didn’t make sense in this email or offended you in anyway. As much as I do it, it is still hard for me as someone who has lived through the horrors and seen the things you have seen to communicate with folks living through it now. Hang in there and let me know if I can help.
www.paytonwright.org"
I especially like the fact that many of the things in Mr. Wright's email are things we've found ourselves saying like "CANCER SUCKS!" I understand the last golf tournament they had raised over $70,000!
The ball is rolling again to get "CJ's Thumbs Up! Foundation" up and running. We hope it will be a "fun-raising" organization that will privide financial (and sometimes personell) assistance to individuals and other organizations that already do the things we were thinking of doing. We'll let you know when the tires hit the road.
So here's to 100,000 hits, the Strawberry Faire, and the Concert Series!
Thanks for everything past, present, and future!
Roger
Wednesday, May 27, 2009
Surgery
Charlotte went in to surgery at 10:08am.
We woke up at about 4:30am and got to the hospital before 6:00. The valet parking didn't open until 6:00 so we had to wait. In that time I could have parked in the garage, got validated parking, and been upstairs getting ready for the big day. But then I heard the road construction made it very difficult to manuver so it looks like we went the proper route after all.
As we got all ready for the MRI, Charlotte started getting antsy so we watched Caillou videos on the iPhone. Paid for itself several times over as far as I'm concerned.
When we went down to the MRI room, we weren't there long before the anesthesiolgist (woah! There's a $10 word!) showed up to administer the happy juice. At first she didn't want to let them at her central line so I distracted her with pics on the phone (more added value) while they hooked her up. In about 30 seconds, she got this very silly grin on her face and thought everything was extremely amusing!
Then they picked her up, took her in to the MRI room and she was gone. It all happened so fast I didn't get to give her a kiss but it was ok. Rompy, Mickey, and the hand-made pink and purple blanket (I can't remember who made it for her off the top of my head) are with her. Dug the Up! dog waits patiently with us here in the [SQUIRREL!!] 7th floor lounge.
By the way, CJ was very happy to tell everyone that she has TWO dogs now!
So after they took CJ, I found myself without a lot of direction since they sort of mentioned where I should go to wait only in passing and I was a little distracted. So I hung out there for a little while and talked to a young man and his mother waiting for an MRI. Very nice with the "Yes sir" and the "No, sir" and all that. Even with the tiff we're having with Caringbridge, I told them about CB and Hopecam.org. Turns out he is one of triplet boys and has a younger sister in Romp n' Roll's age range. So of course I gave mom my card. (Always workin' it)
So I eventually made my way down to the ground floor waiting room, got a bite to eat and settled in to wait. I promptly fell asleep. My buzzing phone woke me up - Auntie 'Retta was calling trying to find me. Ends up She, Grandpa, and Juanita Bonita were looking for me all over. They were just a floor above in the 1st floor waiting room.
I'm spoiled with the 7th floor so the other waiting rooms just wouldn't do. I pulled Loretta up with me and started the sign-in process early. I got the sign-in sheet filled out and saw plenty of folks who remember Charlotte including Heather from Child Life. They seem to be all ready for us.
CJ will be in room 614 of the PICU which means for now, kids can't visit and we have to space out the number of adults but after a day or so, we certainly want people to stop by. It can do nothing but good for her.
So now we're camped out, waiting for word. They are supposed to call anytime now with an update.
"Charlotte's Devon" is headed over to have lunch with us and Dean from Glen Allen Golf just called to let us know the total from the fun-raiser was $140! Thanks to all who came out.
Just heard from Nurse Janice in the OR. Charlotte is still in surgery and things are going as expected. If she's still in surgery at 2:00 they'll call with another update.
More details as they come up.
Latest update:
They were finishing up and might be done within a half an hour. Charlotte has been stable the entire time and everything looks good so far.
I don't think I'll be making it to Romp n' Roll this afternoon. Anyone in my Wednesday classes will be in the very capable hands of Miss Samantha. (She's been doing so well covering my classes lately, I think I might be losing some of my kiddies to her classes!)
Thanks to Devon for a very tasty lunch.
Stay tuned...
She is out of surgery and looking GREAT!
She is still a little loopy from the anesthesia but that's mostly making her act very funny more than anything else. She is gradually getting tubes, a-lines, ivs, etc. taken out. She is talking and moving all her limbs. Looks a little pale and will probably have a small transfusion but overall we can't complain.
Dr. Tye thinks he got a LOT of tumor. No word on percentage but he is reasonably confident that he got a very large amount. He said the pathway was really clear and he was able to get quite a bit. She will probably have an MRI tomorrow or Friday and they are going to aim for both head and spine to get a full picture.
Her tumor samples have been sent off to the MCV lab as well as a lot that will be going to Houston by Friday.
We have a nice room in the PICU...actually one of the ones we had last time with lots of space and a great, sunny view of the capitol and the governor's mansion.
I think that's all we have to report for now.
Thanks for all the prayers and support.
Rachel and Roger
We woke up at about 4:30am and got to the hospital before 6:00. The valet parking didn't open until 6:00 so we had to wait. In that time I could have parked in the garage, got validated parking, and been upstairs getting ready for the big day. But then I heard the road construction made it very difficult to manuver so it looks like we went the proper route after all.
As we got all ready for the MRI, Charlotte started getting antsy so we watched Caillou videos on the iPhone. Paid for itself several times over as far as I'm concerned.
When we went down to the MRI room, we weren't there long before the anesthesiolgist (woah! There's a $10 word!) showed up to administer the happy juice. At first she didn't want to let them at her central line so I distracted her with pics on the phone (more added value) while they hooked her up. In about 30 seconds, she got this very silly grin on her face and thought everything was extremely amusing!
Then they picked her up, took her in to the MRI room and she was gone. It all happened so fast I didn't get to give her a kiss but it was ok. Rompy, Mickey, and the hand-made pink and purple blanket (I can't remember who made it for her off the top of my head) are with her. Dug the Up! dog waits patiently with us here in the [SQUIRREL!!] 7th floor lounge.
By the way, CJ was very happy to tell everyone that she has TWO dogs now!
So after they took CJ, I found myself without a lot of direction since they sort of mentioned where I should go to wait only in passing and I was a little distracted. So I hung out there for a little while and talked to a young man and his mother waiting for an MRI. Very nice with the "Yes sir" and the "No, sir" and all that. Even with the tiff we're having with Caringbridge, I told them about CB and Hopecam.org. Turns out he is one of triplet boys and has a younger sister in Romp n' Roll's age range. So of course I gave mom my card. (Always workin' it)
So I eventually made my way down to the ground floor waiting room, got a bite to eat and settled in to wait. I promptly fell asleep. My buzzing phone woke me up - Auntie 'Retta was calling trying to find me. Ends up She, Grandpa, and Juanita Bonita were looking for me all over. They were just a floor above in the 1st floor waiting room.
I'm spoiled with the 7th floor so the other waiting rooms just wouldn't do. I pulled Loretta up with me and started the sign-in process early. I got the sign-in sheet filled out and saw plenty of folks who remember Charlotte including Heather from Child Life. They seem to be all ready for us.
CJ will be in room 614 of the PICU which means for now, kids can't visit and we have to space out the number of adults but after a day or so, we certainly want people to stop by. It can do nothing but good for her.
So now we're camped out, waiting for word. They are supposed to call anytime now with an update.
"Charlotte's Devon" is headed over to have lunch with us and Dean from Glen Allen Golf just called to let us know the total from the fun-raiser was $140! Thanks to all who came out.
Just heard from Nurse Janice in the OR. Charlotte is still in surgery and things are going as expected. If she's still in surgery at 2:00 they'll call with another update.
More details as they come up.
Latest update:
They were finishing up and might be done within a half an hour. Charlotte has been stable the entire time and everything looks good so far.
I don't think I'll be making it to Romp n' Roll this afternoon. Anyone in my Wednesday classes will be in the very capable hands of Miss Samantha. (She's been doing so well covering my classes lately, I think I might be losing some of my kiddies to her classes!)
Thanks to Devon for a very tasty lunch.
Stay tuned...
She is out of surgery and looking GREAT!
She is still a little loopy from the anesthesia but that's mostly making her act very funny more than anything else. She is gradually getting tubes, a-lines, ivs, etc. taken out. She is talking and moving all her limbs. Looks a little pale and will probably have a small transfusion but overall we can't complain.
Dr. Tye thinks he got a LOT of tumor. No word on percentage but he is reasonably confident that he got a very large amount. He said the pathway was really clear and he was able to get quite a bit. She will probably have an MRI tomorrow or Friday and they are going to aim for both head and spine to get a full picture.
Her tumor samples have been sent off to the MCV lab as well as a lot that will be going to Houston by Friday.
We have a nice room in the PICU...actually one of the ones we had last time with lots of space and a great, sunny view of the capitol and the governor's mansion.
I think that's all we have to report for now.
Thanks for all the prayers and support.
Rachel and Roger
Wednesday, May 20, 2009
Announcements
Some announcements for the week:
0. There was a green old navy jacket (adult size xs) left at the Head Shaving Party @ Romp n' Roll in April. If it belongs to you, please come by or call to claim it. It's really cute and I would take it but there's NO WAY I'm an XS :-)
1. Mini Golf/Batting Cages/Driving Range TONIGHT 7-10 PM at Glen Allen Golf on US1 to benefit Charlotte.
2. The Five Below event @ VCC seemed to be a success and Charlotte's story has really touched on the people there SO they are repeating the event for the next TWO weekends. Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes (sp?).
3. Don't forget about the Brain Tumor Awareness Benefit Concert with Susan Greenbaum and Cheryl Fare at Ashland Coffee and Tea Saturday (5/23) from 3-6 PM. The event itself does not benefit Charlotte directly but it is a great cause with great music AND there will be a 50/50 raffle for Charlotte as well. Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it.
4. A shout-out to Christy, Wendy, and Torrie for helping Roger with the FACES event at Virginia Crossings tonight.
5. A HUGE shout-out to Jackie Plank for continuing the fundraising efforts.
6. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors (Pampered Chef, Arbonne, Longaberger Baskets, etc.) selling their wares and donating a portion of the proceeds to Charlotte. Start your Christmas shopping early! Also, I think a Silent Auction is in the works.
With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" (they will cover the visit but not the tumor evaluation since that is considered experimental). We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates. Given that we do not know right now how many stem cell transplants/rounds of high dose chemo she will need and/or whether this will go on past this calendar year (since our deductible is for the calendar year), this will probably increase our out-of-pocket medical costs to anywhere between $40-100K. We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us...
That is all I have to report. I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! Whew!
Rachel
First off and VERY IMPORTANT, the little thermometer to the right isn't our idea. It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well. Might be the last one I send if they keep that kind of crap up
Be that as it may, today was a HUGE day! First off, I woke up, completely alert, at 4AM this morning. No idea why.
Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston ("Houston, Texas?!?")
This next event illustrated Cerisa's post brilliantly: While headed home, I asked Charlotte where she wanted to have lunch and she said the ever wonderful, "Chick-fil-a." When I said, OK, we're going to Chick-fil-a, she immediately said, "People eat there seven times a day!" If you don't know to what that refers, immediately open a new browser tab/window and go here:
http://www.youtube.com/watch?v=NsJHqstPuNo
No, really. Go do that now...
Hmmm dee dum dummm
Great, eh?
OK so we get to CFA and we meet Mommy there. We had a great lunch, CJ had ice cream with her lunch, and Mommy and I switched cars and Charlotte.
I then went to VA Crossings Resort to set up the Romp n' Roll stuff for the FACES of Virginia meeting. I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions.
I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. I figured that's OK since I'll have my star volunteers, Torrie (Too Tall Torrie) Heathcoat and Christy Yeadon MAN Am I glad they were there! Couldn't have done this without them. Thanks, ladies!
After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all.
So we made a lot of FACES parents very happy to be able to have a nice, relatively quiet dinner. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is. Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's why I dig this FACES of Virginia Families organization so much. That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Heck! Boss woman, Cate Neubanks is even going to yoga with us on June 6th.
I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser! I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can.
We still don't have final numbers from the burrito eating contest at Qdoba. Still working on it.
Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase.
Thanks for all your well wishes for the safe trip. See you in Houston.
Rog
p.s. We got the ReeseStrong doll and will be taking it to Houston.
0. There was a green old navy jacket (adult size xs) left at the Head Shaving Party @ Romp n' Roll in April. If it belongs to you, please come by or call to claim it. It's really cute and I would take it but there's NO WAY I'm an XS :-)
1. Mini Golf/Batting Cages/Driving Range TONIGHT 7-10 PM at Glen Allen Golf on US1 to benefit Charlotte.
2. The Five Below event @ VCC seemed to be a success and Charlotte's story has really touched on the people there SO they are repeating the event for the next TWO weekends. Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes (sp?).
3. Don't forget about the Brain Tumor Awareness Benefit Concert with Susan Greenbaum and Cheryl Fare at Ashland Coffee and Tea Saturday (5/23) from 3-6 PM. The event itself does not benefit Charlotte directly but it is a great cause with great music AND there will be a 50/50 raffle for Charlotte as well. Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it.
4. A shout-out to Christy, Wendy, and Torrie for helping Roger with the FACES event at Virginia Crossings tonight.
5. A HUGE shout-out to Jackie Plank for continuing the fundraising efforts.
6. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors (Pampered Chef, Arbonne, Longaberger Baskets, etc.) selling their wares and donating a portion of the proceeds to Charlotte. Start your Christmas shopping early! Also, I think a Silent Auction is in the works.
With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" (they will cover the visit but not the tumor evaluation since that is considered experimental). We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates. Given that we do not know right now how many stem cell transplants/rounds of high dose chemo she will need and/or whether this will go on past this calendar year (since our deductible is for the calendar year), this will probably increase our out-of-pocket medical costs to anywhere between $40-100K. We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us...
That is all I have to report. I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! Whew!
Rachel
First off and VERY IMPORTANT, the little thermometer to the right isn't our idea. It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well. Might be the last one I send if they keep that kind of crap up
Be that as it may, today was a HUGE day! First off, I woke up, completely alert, at 4AM this morning. No idea why.
Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston ("Houston, Texas?!?")
This next event illustrated Cerisa's post brilliantly: While headed home, I asked Charlotte where she wanted to have lunch and she said the ever wonderful, "Chick-fil-a." When I said, OK, we're going to Chick-fil-a, she immediately said, "People eat there seven times a day!" If you don't know to what that refers, immediately open a new browser tab/window and go here:
http://www.youtube.com/watch?v=NsJHqstPuNo
No, really. Go do that now...
Hmmm dee dum dummm
Great, eh?
OK so we get to CFA and we meet Mommy there. We had a great lunch, CJ had ice cream with her lunch, and Mommy and I switched cars and Charlotte.
I then went to VA Crossings Resort to set up the Romp n' Roll stuff for the FACES of Virginia meeting. I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions.
I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. I figured that's OK since I'll have my star volunteers, Torrie (Too Tall Torrie) Heathcoat and Christy Yeadon MAN Am I glad they were there! Couldn't have done this without them. Thanks, ladies!
After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all.
So we made a lot of FACES parents very happy to be able to have a nice, relatively quiet dinner. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is. Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's why I dig this FACES of Virginia Families organization so much. That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Heck! Boss woman, Cate Neubanks is even going to yoga with us on June 6th.
I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser! I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can.
We still don't have final numbers from the burrito eating contest at Qdoba. Still working on it.
Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase.
Thanks for all your well wishes for the safe trip. See you in Houston.
Rog
p.s. We got the ReeseStrong doll and will be taking it to Houston.
Friday, May 8, 2009
A Lot to Consider
Hi all,
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.
The good news is that her blood counts look GREAT. Everything has come up where it needs to be.
Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.
On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).
Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.
Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.
Rachel
We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.
Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.
The good news is that her blood counts look GREAT. Everything has come up where it needs to be.
Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.
On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).
Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.
Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.
Rachel
We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.
Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.
Friday, May 1, 2009
MRI Results
I apologize in advance for our lack of update. It's been a busy 24 hours (or so).
VERY excited to see that there are at least 12 contestants in the burrito eating contest! Hooray! Come on out and support these crazy eaters! That's wonderful!
Yesterday was a busy day all around. Charlotte was active and feeling pretty good most of the day. Her methotrexate level was about 2.1 which is good (it has to be .01 before they can start the next part of chemo but usually after "day 1" it was around 3.). That means her body is flushing the "stuff" out of her at a good rate. They were monitoring her blood pressure for a little while as it seemed to be high...BUT then she pooped and the pressure seemed to drop back to normal. Again, hooray. Her appetite was good yesterday and she ate lots of fruit so I am sure that helped.
Auntie Retta visited in the morning and brought mom coffee and yogurt for breakfast. YUM. She and Charlotte played some Candy Land and we all had some good visiting time. Granny arrived at the hospital around noon. We took a few walks, went to the playroom, and she was in a very "artsy" mood, drawing and doing collages with stickers. I understand that the rest of her day was very active as well.
I left after signing the consent for her MRI today and headed over to Romp n' Roll where things were hoppin'. It was a very busy afternoon and evening with our registration event. Lots of fun and we didn't stop until after 8 PM!! It was good to see many of our regular customers and a few new faces as well. Lots of people asking about Charlotte.
Roger and I got to spend another night together. That is a rarity these days so we try to appreciate it. Now it's off for another busy day and a weekend ahead.
Many of you have commented to us about hoping that the MRI will show shrinkage of the tumor. Interestingly enough, my understanding from Dr. Khan is that we really don't expect a lot of shrinkage during the first stages of chemo. They just hope not to see any additional or new growth. Today they will be looking specifically at her spine to make sure that none of the remaining tumor has spread to other areas of the central nervous system. Until she starts the high dose chemo, they do not expect the tumor to die and/or shrink. Kind of depressing when you think about all that she has been through and how this really doesn't do much (visually) to solve the problem but I know and trust that this will be the right thing for her.
Gotta go get ready for a busy weekend. Can you believe it is May already? When we started this process, it was cold, wintry, and January. Now there is green everywhere and flowers in bloom. And we're starting to think about summer. Crazy!
OH an update about the cruise: I think we are pursuing options for a 5-day Disney cruise that will leave out of Port Canaveral (Florida) sometime in Mid-June 2010. There are more details to come but start to think about whether you and your family would be interested. We know that not everyone will be able to go but Charlotte would love to celebrate her recovery with you on a Disney Cruise! I've already got an idea brewing in my head for t-shirts...
I'm sure there would be some kind of initial deposit but the balance would not be due until April of next year so you have a year to save for the big event. We are working with our travel agent on this and will distribute more information when it is available.
Happy Friday!
Rachel
Charlotte went in for her MRI at about 12:30. I got to the hospital just in time to see her off into the capable hands of the radiologists. She was really funny when they gave her the "sleepy juice". As we may have mentioned before, it has about the same effect as a fast acting cocktail. So true to form with most of the women on my side of the family, she's a "fun drunk" (Roger can elaborate on that) :-) Anyway, she was very giggly and talkative and cracking up me and Granny.
Granny and I went upstairs to wait. She had a pretty good night from what I understand and slept well. Much thanks to Granny for staying with her and giving me and Roger a break.
She came back from the MRI still loopy but has since had some juice, most of an apple, and most of a hot dog. Now she's in Backyardigans Land (at least she's branching out from Dora).
No report from Radiology or Neurology yet about the MRI results but I did talk to Dr. Massey for a bit about her current levels. It looks like Potassium is good again but her Vitamin D is low. Not surprising because the chemo tends to deplete this nutrient a lot. Combine that with the fact that she isn't getting her normal daily dose of "outside" and we have low Vitamin D. Apparently we need to watch this pretty closely as long-term studies of kids with these kind of treatments sometimes result in low bone density down the road. So she'll probably get started on a Vitamin D supplement in addition to her multivitamin regimen.
The subject of radiation was once again broached as well. Looks like this will be even more of an inevitability. As she gets older and we see how the chemo progresses, they will tighten the plans for her protocol but since we weren't able to get 100% of the tumor out and the PNETs tend to be very aggressive, I think they are already looking forward to what type of radiation protocol we will need to consider. I don't have any more info on that yet but I'll find out and you (our loving fans) will be some of the first to know :-)
That's all I have to report for now.
Rachel
Big PS: (and the whole reason I signed on in the first place)...
The Fundraiser at Everything But Water (Short Pump Town Center) has been postponed until May 17th. More info to come soon.
Ok, folks...not so good news:
We got the MRI results back. The long and short of it is: the tumor is growing. It seems that the chemo has not done anything to stave off the growth of these cancer cells. PNET tumors are, as Dr. Khan says, "Notoriously Ill-behaved". And this one is no exception.
SOOOO...what does this mean, you may ask?
We are stopping chemo for now (no sense in putting her through more of this if it's not working). She will go home tomorrow. We may still see her counts drop a bit but hopefully not as much since she didn't get the full round of chemo this time. We will be back in the clinic next week to check levels. We will also have a consult with Dr. Tye next week. He is out of town at a conference this week but has spoken with Dr. Khan and while he has not seen the scans, they are already talking about the possibility of another surgery to debulk as much of the tumor as they can. This would be probably two weeks from now (we have to wait for the chemo to completely get out of her system and for her levels to come up). They have to weigh the pros and cons of a third surgery that will remove as many cancer cells as possible vs the risks of surgery, etc.
Whether or not surgery is an option, the next step will be RADIATION (yes, indeedy, we are there). It will probably be pretty localized (not full head or spine) at this point but probably about 30 days worth. This could start as early as four weeks from now (if no surgery) or later if she has to have surgery. This should be outpatient but just about every day.
And then we reassess and probably jump at that point to the high dose chemo. Hey, at least we're not in a time crunch to get the insurance company to agree with us now (see, I can see the bright side of things....)
Needless to say, this has been very disappointing to me. Roger knows the "scoop" but did not have the advantage of seeing the scans. We will get to meet with Dr. Khan again on Monday to go over questions, etc.
In good news, Charlotte has been in great spirits all day. Thanks to Granny's conversations with the nutritionist, we got some extra strawberries ordered for her and she ate them ALL (not to mention all the berries granny brought yesterday). She also had a visit from Lisa Branner (the Marketing Director at Qdoba who is organizing this great burrito eating EVENT on Sunday). She brought Charlotte chocolate ice cream (YUM!) dinner for me (YUM YUM!) and stayed and talked for a while. She actually got here while I was meeting with Dr. Khan so it was good to have someone to talk to immediately after taking in all this bad news.
Charlotte is deep into her sticker collage creations and made pictures for Lisa AND Dr. Khan. Now it's Dora Time. Anything for this Princess, that's for sure!!!
HUGS and Deep Breaths to everyone. May the prayers for healing continue.
Rachel
VERY excited to see that there are at least 12 contestants in the burrito eating contest! Hooray! Come on out and support these crazy eaters! That's wonderful!
Yesterday was a busy day all around. Charlotte was active and feeling pretty good most of the day. Her methotrexate level was about 2.1 which is good (it has to be .01 before they can start the next part of chemo but usually after "day 1" it was around 3.). That means her body is flushing the "stuff" out of her at a good rate. They were monitoring her blood pressure for a little while as it seemed to be high...BUT then she pooped and the pressure seemed to drop back to normal. Again, hooray. Her appetite was good yesterday and she ate lots of fruit so I am sure that helped.
Auntie Retta visited in the morning and brought mom coffee and yogurt for breakfast. YUM. She and Charlotte played some Candy Land and we all had some good visiting time. Granny arrived at the hospital around noon. We took a few walks, went to the playroom, and she was in a very "artsy" mood, drawing and doing collages with stickers. I understand that the rest of her day was very active as well.
I left after signing the consent for her MRI today and headed over to Romp n' Roll where things were hoppin'. It was a very busy afternoon and evening with our registration event. Lots of fun and we didn't stop until after 8 PM!! It was good to see many of our regular customers and a few new faces as well. Lots of people asking about Charlotte.
Roger and I got to spend another night together. That is a rarity these days so we try to appreciate it. Now it's off for another busy day and a weekend ahead.
Many of you have commented to us about hoping that the MRI will show shrinkage of the tumor. Interestingly enough, my understanding from Dr. Khan is that we really don't expect a lot of shrinkage during the first stages of chemo. They just hope not to see any additional or new growth. Today they will be looking specifically at her spine to make sure that none of the remaining tumor has spread to other areas of the central nervous system. Until she starts the high dose chemo, they do not expect the tumor to die and/or shrink. Kind of depressing when you think about all that she has been through and how this really doesn't do much (visually) to solve the problem but I know and trust that this will be the right thing for her.
Gotta go get ready for a busy weekend. Can you believe it is May already? When we started this process, it was cold, wintry, and January. Now there is green everywhere and flowers in bloom. And we're starting to think about summer. Crazy!
OH an update about the cruise: I think we are pursuing options for a 5-day Disney cruise that will leave out of Port Canaveral (Florida) sometime in Mid-June 2010. There are more details to come but start to think about whether you and your family would be interested. We know that not everyone will be able to go but Charlotte would love to celebrate her recovery with you on a Disney Cruise! I've already got an idea brewing in my head for t-shirts...
I'm sure there would be some kind of initial deposit but the balance would not be due until April of next year so you have a year to save for the big event. We are working with our travel agent on this and will distribute more information when it is available.
Happy Friday!
Rachel
Charlotte went in for her MRI at about 12:30. I got to the hospital just in time to see her off into the capable hands of the radiologists. She was really funny when they gave her the "sleepy juice". As we may have mentioned before, it has about the same effect as a fast acting cocktail. So true to form with most of the women on my side of the family, she's a "fun drunk" (Roger can elaborate on that) :-) Anyway, she was very giggly and talkative and cracking up me and Granny.
Granny and I went upstairs to wait. She had a pretty good night from what I understand and slept well. Much thanks to Granny for staying with her and giving me and Roger a break.
She came back from the MRI still loopy but has since had some juice, most of an apple, and most of a hot dog. Now she's in Backyardigans Land (at least she's branching out from Dora).
No report from Radiology or Neurology yet about the MRI results but I did talk to Dr. Massey for a bit about her current levels. It looks like Potassium is good again but her Vitamin D is low. Not surprising because the chemo tends to deplete this nutrient a lot. Combine that with the fact that she isn't getting her normal daily dose of "outside" and we have low Vitamin D. Apparently we need to watch this pretty closely as long-term studies of kids with these kind of treatments sometimes result in low bone density down the road. So she'll probably get started on a Vitamin D supplement in addition to her multivitamin regimen.
The subject of radiation was once again broached as well. Looks like this will be even more of an inevitability. As she gets older and we see how the chemo progresses, they will tighten the plans for her protocol but since we weren't able to get 100% of the tumor out and the PNETs tend to be very aggressive, I think they are already looking forward to what type of radiation protocol we will need to consider. I don't have any more info on that yet but I'll find out and you (our loving fans) will be some of the first to know :-)
That's all I have to report for now.
Rachel
Big PS: (and the whole reason I signed on in the first place)...
The Fundraiser at Everything But Water (Short Pump Town Center) has been postponed until May 17th. More info to come soon.
Ok, folks...not so good news:
We got the MRI results back. The long and short of it is: the tumor is growing. It seems that the chemo has not done anything to stave off the growth of these cancer cells. PNET tumors are, as Dr. Khan says, "Notoriously Ill-behaved". And this one is no exception.
SOOOO...what does this mean, you may ask?
We are stopping chemo for now (no sense in putting her through more of this if it's not working). She will go home tomorrow. We may still see her counts drop a bit but hopefully not as much since she didn't get the full round of chemo this time. We will be back in the clinic next week to check levels. We will also have a consult with Dr. Tye next week. He is out of town at a conference this week but has spoken with Dr. Khan and while he has not seen the scans, they are already talking about the possibility of another surgery to debulk as much of the tumor as they can. This would be probably two weeks from now (we have to wait for the chemo to completely get out of her system and for her levels to come up). They have to weigh the pros and cons of a third surgery that will remove as many cancer cells as possible vs the risks of surgery, etc.
Whether or not surgery is an option, the next step will be RADIATION (yes, indeedy, we are there). It will probably be pretty localized (not full head or spine) at this point but probably about 30 days worth. This could start as early as four weeks from now (if no surgery) or later if she has to have surgery. This should be outpatient but just about every day.
And then we reassess and probably jump at that point to the high dose chemo. Hey, at least we're not in a time crunch to get the insurance company to agree with us now (see, I can see the bright side of things....)
Needless to say, this has been very disappointing to me. Roger knows the "scoop" but did not have the advantage of seeing the scans. We will get to meet with Dr. Khan again on Monday to go over questions, etc.
In good news, Charlotte has been in great spirits all day. Thanks to Granny's conversations with the nutritionist, we got some extra strawberries ordered for her and she ate them ALL (not to mention all the berries granny brought yesterday). She also had a visit from Lisa Branner (the Marketing Director at Qdoba who is organizing this great burrito eating EVENT on Sunday). She brought Charlotte chocolate ice cream (YUM!) dinner for me (YUM YUM!) and stayed and talked for a while. She actually got here while I was meeting with Dr. Khan so it was good to have someone to talk to immediately after taking in all this bad news.
Charlotte is deep into her sticker collage creations and made pictures for Lisa AND Dr. Khan. Now it's Dora Time. Anything for this Princess, that's for sure!!!
HUGS and Deep Breaths to everyone. May the prayers for healing continue.
Rachel
Thursday, April 16, 2009
Charlotte is Back in the Hospital
Crap...crap...crappity crap crap...
We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.
She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.
No word yet as to how long we'll be in this time. We'll let you know.
In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.
Gotta run and get ready for Romp n' roll.
Rachel
Big wheels keep on turnin'....
Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!
Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE
If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.
About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.
On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at rreynolds@rompnroll.com
I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...
Rachel
So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.
Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.
She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.
We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.
She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.
Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.
Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.
On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.
She has eaten a good bit, slept a little and is now in a very good mood. That's good.
Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:
http://www.youtube.com/watch?v=wsLqKAvKiQM
Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.
Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.
So off I go to entertain the princess.
We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.
She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.
No word yet as to how long we'll be in this time. We'll let you know.
In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.
Gotta run and get ready for Romp n' roll.
Rachel
Big wheels keep on turnin'....
Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!
Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE
If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.
About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.
On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at rreynolds@rompnroll.com
I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...
Rachel
So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.
Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.
She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.
We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.
She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.
Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.
Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.
On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.
She has eaten a good bit, slept a little and is now in a very good mood. That's good.
Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:
http://www.youtube.com/watch?v=wsLqKAvKiQM
Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.
Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.
So off I go to entertain the princess.
Monday, January 26, 2009
There's Good News and Bad News (deep breath...)
Good news is that the tumor is what they call a PNET (Primative neuroectode
The bad news is that it's in a really bad place due to what it is pushing up against. They have to go in again on Thursday and try to get as much of the rest as possible. Dr. Tye said that since the pathology report has shown him that she has a fighting chance, he wants to be much more aggressive this time (even though he's still fairly sure that he can't get it all) which means that CJ might possibly have much more serious physical deficits than with the first surgery. Fortunately
She will also probably need a shunt installed to help with drainage from the brain and a "port" of some kind implanted for the chemotherap
Then another period of recovery where she'll be evaluated and all that stuff. They may want her to go through a period of rehab before we start chemo/radia
Whil
Thanks to everyone who continues to step up to the plate for us: our romp n' roll staff, the folks at the other area stores, our customers, friends, and family who have offered help wherever needed.
Charlotte continues to sleep peacefully and we will keep you updated.
Tha
The big card from St. James The Less was delivered and sits nicely under the T.V.
Uncle Vance got off fine yesterday. Dad and Juanita Bonita will be coming in soon.
Babz, looks we need RNR2Go covered again Thursday if possible.
Rache
PS She did get a sip or two of chocolate milk today! Didn't want much more than that but it's a start!
The bad news is that it's in a really bad place due to what it is pushing up against. They have to go in again on Thursday and try to get as much of the rest as possible. Dr. Tye said that since the pathology report has shown him that she has a fighting chance, he wants to be much more aggressive this time (even though he's still fairly sure that he can't get it all) which means that CJ might possibly have much more serious physical deficits than with the first surgery. Fortunately
She will also probably need a shunt installed to help with drainage from the brain and a "port" of some kind implanted for the chemotherap
Then another period of recovery where she'll be evaluated and all that stuff. They may want her to go through a period of rehab before we start chemo/radia
Whil
Thanks to everyone who continues to step up to the plate for us: our romp n' roll staff, the folks at the other area stores, our customers, friends, and family who have offered help wherever needed.
Charlotte continues to sleep peacefully and we will keep you updated.
Tha
The big card from St. James The Less was delivered and sits nicely under the T.V.
Uncle Vance got off fine yesterday. Dad and Juanita Bonita will be coming in soon.
Babz, looks we need RNR2Go covered again Thursday if possible.
Rache
PS She did get a sip or two of chocolate milk today! Didn't want much more than that but it's a start!
Friday, January 23, 2009
Another Long Night
Another long night. I'm pretty sleepless these days for many reasons. Hospital noises, wanting to be there for Charlotte, general nervous energy...
Ac
We have posted all her cards, the angel star poster inititated by Aunt Loretta and created by folks who visited today, pictures of her friends...s
That neurosurgeo
She is surrounded by all the stuffed animals that have been sent in. They are all dear and she talks about them and pets them. They are good "bolsters" to prop her up in bed. Rompy has been close by all the time and went into surgery with her. The nurses have bandaged Rompy's head to look like hers and we told her that Rompy is trying to feel better too. She said, "I want Rompy's head to be better so he can take his bandage off."
She has been running a low fever (99-100) which is very normal after surgeries. About 2 AM they needed to give her some blood (about 17 ml) because her hemoglobin was low). Again, to be expected in a surgery like this. She was eating and drinking earlier and seemed to be voiding well but her catheter bag is getting a bit TOO full and they have sent some of her urine off to the lab. The pituitary gland can get a bit overactive and she will excrete too much fluid. They still have her on IV fluids and are monitoring her very closely.
Ple
I will try to rest and so will sign off now.
Rachel
Ac
We have posted all her cards, the angel star poster inititated by Aunt Loretta and created by folks who visited today, pictures of her friends...s
That neurosurgeo
She is surrounded by all the stuffed animals that have been sent in. They are all dear and she talks about them and pets them. They are good "bolsters" to prop her up in bed. Rompy has been close by all the time and went into surgery with her. The nurses have bandaged Rompy's head to look like hers and we told her that Rompy is trying to feel better too. She said, "I want Rompy's head to be better so he can take his bandage off."
She has been running a low fever (99-100) which is very normal after surgeries. About 2 AM they needed to give her some blood (about 17 ml) because her hemoglobin was low). Again, to be expected in a surgery like this. She was eating and drinking earlier and seemed to be voiding well but her catheter bag is getting a bit TOO full and they have sent some of her urine off to the lab. The pituitary gland can get a bit overactive and she will excrete too much fluid. They still have her on IV fluids and are monitoring her very closely.
Ple
I will try to rest and so will sign off now.
Rachel
January 22: The First Surgery
3:46 AM, CST
They brought her up about 30 minutes ago and we just got to come in and see her. She's very pale but the team said she was moving everything. Her left side will be weak for a while but that should improve with time. She doesn't need a ventilator and she did about as good as she possibly could have.
Charlotte has gone with the anesthesiol
12:55 PM, CST
No real news to report regarding the surgery yet but I just wanted to say thank you. Roger and I feel so supported right now. We are overwhelmed (in a good way) by the response, both spiritual and tangible. We feel loved, supported, and safe. I am actually in a pretty good place emotionally right now because I know that all of God's angels (or at least a whole LOT of them) are watching us right now. God is good...keep the prayers going.
2:26 PM, CST
A nurse just called down to the OR and one of the nurses there told her they were "closing." The very preliminary word was that no blood was needed yet (Dr. Tye told us that it was almost a sure thing that they would need it and if she needed too much, they might have to halt the operation), the tube for any drainage is in place, and they would be bringing her back up relatively soon. After they clean her up, pull out the extra IV tubes, etc...they'
The stream of visitors continues, the food keeps coming, the cards and toys are piling up...Awesome! Thanks everyone.
As we've been kind of taking over the lounge, we've been meeting other parents with children receiving treatment. I don't think they have CaringBridg
Let's keep this on "simmer" and maybe after things settle a bit from CJ's procedure, we can think about continuing this "thing" that seems to have harnessed an incredible amount of power.
But first, let's get CJ going again. We'll let you know...
4:06 PM, CST
SHE'S OUT!!!
They brought her up about 30 minutes ago and we just got to come in and see her. She's very pale but the team said she was moving everything. Her left side will be weak for a while but that should improve with time. She doesn't need a ventilator and she did about as good as she possibly could have.
Dr. Tye said they took out between 60 and 70% of the tumor (which is good) and it will take a week or so to figure out whether it's a low level (good) or high level (not so good) tumor. If it's low level, they'll probably go back in next week and take out as much of the rest as possible. If it's high level, it'll have to be a more radiation/c
As they were wakng her up in the room, they asked her to move her legs and she cross her left leg over her right in a "very prissy" manner according to nurse Melissa. She also is very good at giving the "thumbs up" sign to let us know how she's doing. The team said there were cheers all around. Yet more people falling in love with her.
So far, she's counted to 10 in sign for us, squeezed my hand to let me know she does NOT want me to sing to her, and, most importanly, she doesn't have a headache. No talking yet but she has opened her eyes and we got a partial smile when I pretended to put lip balm on her underarms. With all the dots and dashes they wrote on her head, I half expected her to come out with a Groucho moustache and eyebrows.
We still have a very long road ahead of us but barring an unforseen setback, a very good deal of the worst is over.
Did we mention how fortunate we feel to have had so many people all over the world sending us their best wishes?
6:35 PM, CST
Thank you to all of you.
To those we know well:
Our families, friends, customers, employees, coworkers, Charlotte's friends....
To those we know sometimes in passing:
Ric
To those we have never even met:
The coles network, the strangers who have found us through Facebook and Caring Bridge, those who have never met us but know someone who does...
THAN
We feel so comforted, blessed, and secure with the messages have received. The support that has come through this board, emails, phone calls, offers for help, are just fabulous.
Ke
I will sign off for tonight but keep the prayers coming. All the best...
Rache
Tuesday, January 20, 2009
Our Story (from the very beginning...)
Charlotte had been complaining of headaches for about 2 weeks. We decided to take her to the pediatrician and they immediately sent us to St. Mary's hospital for a CT Scan. The scan revealed a large (orange-to-grapefruit-sized) mass and Charlotte was admitted on 1/20/09 to MCV hospital in Richmond. She was diagnosed with a PNET tumor (Primitive Neuroectodermal Tumor) with its origin in the thalamus. PNETs are similar in structure (on the cellular level) to medullablastoma. Medullablastoma is the most common malignant brain tumor in children. On the other hand, PNETs are more rare and can sometimes behave differently. From what we understand from her doctors, her pathology revealed a very aggressive tumor that tends to regrow quickly without treatment.
She had 2 craniotomies in 2 weeks. Surgery was able to remove about 90% of the tumor and after a 3 week hospital stay, we came home for outpatient therapy. She emerged from the surgeries with some left side weakness but quickly regained the ability to walk and use her left hand with support.
Charlotte finished her first round of inpatient chemotherapy on March 13th and finished her second round on April 10th. We started a third round of induction chemotherapy on April 28th; however, a new MRI revealed that her tumor was growing in spite of the chemo.
At this point, we scrapped her current protocol and had a consultation with the clinic at MD Anderson in Houston, TX to get guidance on future treatment of her tumor.
Her third surgery occurred on May 27th and was very successful. Dr. Tye removed nearly all of the remaining tumor with just a few very small bits left over in places he wasn't comfortable going, including some on her brainstem.
Her new chemo protocol developed by the folks at MD Anderson began soon after her 3rd surgery. On July 11, 2009, two days after her fourth birthday, we packed up and headed back to Houston, TX for 30 days (7 weeks) of proton radiation therapy. She also received some chemotherapy during this time. Charlotte tolerated the radiation/chemo combo well and we returned from Texas on September 1, 2009.
Charlotte continued on a revised chemo protocol that included accutane, valproic acid, topotecan (all oral) and velcade (IV 2x/week every 2 weeks).
Charlotte's latest MRI (November 6, 2009) revealed that the tumor continues to grow despite radiation, chemo, and all other treatments. The tumor growth is once again placing pressure on the spinal fluid in her ventricles, causing enlargement of her brain cavity.
On November 8, 2009, Dr. Tye placed a shunt in her head. The shunt drains to her stomach and allows pressure to be relieved.
We are pretty much out of treatment options at this point and our time left with Charlotte is probably limited. We are going to enjoy whatever time we have left, including a trip to Disney World sponsored by the Make-A-Wish Foundation.
We are extremely grateful for the tangible, monetary, and spiritual support that Charlotte's community continues to provide in our time of crisis. In the near future, we will formally establish the CJ's Thumbs Up Foundation (CJSTUF) in her name as a mechanism to "pay it forward".
She had 2 craniotomies in 2 weeks. Surgery was able to remove about 90% of the tumor and after a 3 week hospital stay, we came home for outpatient therapy. She emerged from the surgeries with some left side weakness but quickly regained the ability to walk and use her left hand with support.
Charlotte finished her first round of inpatient chemotherapy on March 13th and finished her second round on April 10th. We started a third round of induction chemotherapy on April 28th; however, a new MRI revealed that her tumor was growing in spite of the chemo.
At this point, we scrapped her current protocol and had a consultation with the clinic at MD Anderson in Houston, TX to get guidance on future treatment of her tumor.
Her third surgery occurred on May 27th and was very successful. Dr. Tye removed nearly all of the remaining tumor with just a few very small bits left over in places he wasn't comfortable going, including some on her brainstem.
Her new chemo protocol developed by the folks at MD Anderson began soon after her 3rd surgery. On July 11, 2009, two days after her fourth birthday, we packed up and headed back to Houston, TX for 30 days (7 weeks) of proton radiation therapy. She also received some chemotherapy during this time. Charlotte tolerated the radiation/chemo combo well and we returned from Texas on September 1, 2009.
Charlotte continued on a revised chemo protocol that included accutane, valproic acid, topotecan (all oral) and velcade (IV 2x/week every 2 weeks).
Charlotte's latest MRI (November 6, 2009) revealed that the tumor continues to grow despite radiation, chemo, and all other treatments. The tumor growth is once again placing pressure on the spinal fluid in her ventricles, causing enlargement of her brain cavity.
On November 8, 2009, Dr. Tye placed a shunt in her head. The shunt drains to her stomach and allows pressure to be relieved.
We are pretty much out of treatment options at this point and our time left with Charlotte is probably limited. We are going to enjoy whatever time we have left, including a trip to Disney World sponsored by the Make-A-Wish Foundation.
We are extremely grateful for the tangible, monetary, and spiritual support that Charlotte's community continues to provide in our time of crisis. In the near future, we will formally establish the CJ's Thumbs Up Foundation (CJSTUF) in her name as a mechanism to "pay it forward".
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