I promise that when we publish the book, we’ll fix all the atrocious spellings and grammatical errors!
Yesterday, the New Mexico trio headed back to Farmington/La Plata but not before showering Charlotte with gifts, taxiing us around all over the place, paying for lunch, and revealing that they (Uncle Notsohairy actually) had caps made in purple and pink with Charlotte’s name stitched into them. Pink stitching on the purple hats and visa versa.
Aunt B has agreed to shave her head for a cancer walk they are doing in September but only if I can get Charlotte there for the event. Hmmm…MAN! I really would love to see that. We’ll see.
After we made our goodbyes and they left for the airport, Charlotte and I spent most of the late afternoon in the room with me catching a cat nap here and there and CJ watching videos and waking me up every time one section ended to tell me plot highlights. She got her legs back after a while and we headed back downstairs. Southwest Airlines was serving dinner so it was smelling pretty good down there.
We also met up with a new family with 3 boys and a 9-year old girl (the patient) named Mikayla. Mikayla has become a new bff (dear God, I didn’t really say that, did I?). She and Charlotte seemed to really hit it off. Charlotte doesn’t seem to mind the attention Mikayla gives her and Mikayla really seems to like looking out for CJ. It gave me the chance to get dinner, play a little piano, read a little, stuff like that. The rest of the family seems great too. Dad and the three boys all have their heads shaved in support of Mikayla.
We had a very early (7:30) appointment with the eye doctor Wednesday (yesterday) morning so I had to get CJ into bed as early as possible. It was still well after 10pm.
I slept like doggie doo doo. Not getting enough sleep this week. I’ll try to do better.
So I got her up early and decided to try to dress her in the Dora and Diego scrubs Grandma Bonita made for her. I understand she wouldn’t wear them earlier so I didn’t have much hope. I accidentally happened on the way to get her to wear almost anything: threaten to leave her in her nightgown to go see the Drs. She’s developing such a sense of “style” and fashion that going out in jammies is a complete fauxpas! She left wearing the custom scrubs, surgical cap and all!
I hadn’t actually walked the two blocks to the main hospital since I’ve been back so I forgot that it only take 5-10 minutes to get there which means we arrived at around 7:15 for our 7:30am appointment. Then we waited. The hours on the door said the office didn’t even open until 7:30. Why book a 7:30 appointment when it’s obviously never going to happen at that time? The staff was a little late opening the office so I was a little growly when I went in. Not too bad, though.
We eventually went into the office around 8:05. The “techs” got so much more out of Charlotte this time than the Dr. got last time. We even got dilating drop into her eyes with a minimum of drama. Then when the Dr. actually did come in, my theory was proven correct. CJ remembered her and really wanted nothing to do with her. We ended up having to hold her and force her eyes open so they could look at the optic nerves. That was pretty traumatic. In hindsight, I can’t believe I even allowed it let alone participated in it. Remember, this is the same Dr that asked all the bad questions last time. This time she kept saying things like, “Just do this one thing and we’ll be done.” And then she would do more, making Charlotte realize the next time she heard that phrase that the Dr. was full of crap. I finally had to be a bit rude and tell her in no uncertain terms not to do that anymore. I tell you, she knows a ton about the eye but not much about kids. I told Nurse Rhe about it and she said she’d check into it. The end result is that they left eye still has some very slight swelling around the optic nerve which may just be leftover from everything so no one is too worried about it right now.
There just has to be a better way to do that sort of stuff.
Next on the printed schedule was supposed to be proton therapy at 12:30 with a follow-up visit back to Dr. Wolff at 1:30. Hopefully you can see this wasn’t going to happen. Treatments are about an hour long with 30-45 minute recovery times.
With that in mind, I went into the Children’s Center hoping to get squeezed in before we had to leave for proton. That place is always such a breath of fresh air. Both Rhe and Nurse Carmen came out to talk to her and oogle her scrubs. Charlotte LOVES Nurse Carmen and I guess they have a little ritual conversation/routine they do getting back to the room. Unfortunately, my showing up early put Nurse Carmen at a disadvantage since before, CJ always got there after proton and they could talk about food. Carmen was quick on the uptake when I coughed out “NPO!” and she steered the small talk elsewhere.
Then Dr. Wolff came in and did a masterful job of filtering the crap (most of it mine). When he asked me what was new, what had happened lately, I started grousing about the eye doc and he quickly redirected my energy onto more constructive paths. “Ok, BESIDES the eye doctor, what has happened.” “OH! You actually want me to talk about Charlotte?!? I rarely have felt better about being scolded for being stupid. Especially as an adult. The decision was to start topotecan on Friday
I messed up the schedule yet another way because the blood draws/counts he would have used to decide what to do with the next type of chemo drugs would have been drawn by the proton center and since I hadn’t been there yet, there were no draws to study. Not to worry, we got blood drawn right there and then and we headed off to the proton center. We timed it just right and the MDAnderson shuttle was just starting to pull away when one of the volunteers (God bless ‘em!) ran out and placed her body down in front of the tires to stop the bus.
(OK, so I might be exaggerating just a little.)
The bus driver remembered CJ and I learned his name was Walter Johnson. He mentioned he shared a name with the old-time baseball player. Being more ignorant about baseball than I care to admit, I had no idea who he meant so, in perfect form, I googled him and when the bio came up, I felt even worse about my ignorance. Walter Johnson was arguably the best major league pitcher in history! 115 shutouts! Over 3,000 strikeouts!! Over 400 wins!!! Good name, I told Walter Johnson the shuttle bus driver.
We got to the proton center perfectly on time. I just walked right in, they got vitals real quick, and into the gantry we went. She was really tired already so no Frosty this time.
The other not so good thing was that when she was done recovering, I called The House to make sure the shuttle would stop to pick us up. They said the next shuttle leave at 2:30 and would be there to get us. Just to make sure I called about 2:30 to confirm and they said, yes, you’re on the list. We’ll about 3:30 I called and they had somehow forgotten me. Grumblegrumblegrumble. So they called a cab for me and I took a $4.00 ride. Not too bad. I got over my ruffled feathers pretty quickly.
The rest of the night was pretty standard…CJ read books in the room while I dozed here and there. We went back down and Mikayla was there. FREEDOM! Even if to eat in a smidgen of peace. CJ got her appetite back and devoured a bunch of animal crackers, two cups of Mandarin oranges (one of which had her accutane in it), and three slices of turkey coldcuts.
Then up for Madagascar 2, books, and bed.
So that’s where we are. Tomorrow’s proton appointment is blissfully scheduled for 10:30am!
Take care,
Rog
Update:
Well, I'm not exactly sure how things are out in TX but I know that I have had a GREAT day.
It started early with an 8 AM appointment with Dr. Bitsko but we had to do some flexing with the schedule so that I could see him before I left again for Texas. I'd been having kind of a rough time emotionally since some of Charlotte's recent medical developments and I think coming home (and being by myself to ruminate over it) just makes things worse. Anyway, we had a good talk and he helped me get some perspective on things. Always very helpful and encouraging.
From there, I went to Divas for my SPA DAY! Thanks to the many people who helped make this possible, including Jackie, Meredith, Walter, Sherry, my parents, Becky, Tracy...who did I forget? Anyway, they got me a full day experience at Divas and I had a manicure, pedicure, facial, hydrotherapy treatment, lunch, and a one-hour massage. It was so relaxing and very nice to do something that was just for me.
I did actually go in to work for a bit (Thanks Annette for covering a few extra hours) and then met up with some old work friends for drinks and dinner.
So overall, I really couldn't ask for a better day. I really have work to get done that must get accomplished before I leave again on Saturday but I guess I will get there eventually. Big day at work tomorrow and then I'm on the 24 hour countdown again. Time is flying by and I guess that's a good thing.
So Roger is calling me so I must go talk to my family.
Rachel
Showing posts with label Topotecan. Show all posts
Showing posts with label Topotecan. Show all posts
Thursday, August 13, 2009
Wednesday, August 5, 2009
A Difficult Day
"There are two ways of meeting difficulties: you alter the difficulties, or you alter yourself to meet them." --Phyllis Bottome
It's been a rough day. Plain and simple.
First of all, it's hotter than Hades here. Heat index was WAY over 100 today and we spent as little time outside as possible. No walk, no exercise for me.
Her appointments went well. The clinic was VERY busy. The busiest I've ever seen it in the lobby (standing room only). They did get us in pretty quickly, though. Then we just waited for Dr. Wolff. Her labs look pretty good. White blood cells are low but everything else is looking ok. So as long as she doesn't get a fever, we're still good.
Had to run through some rigamarole trying to get her Accutane prescription renewed. Still haven't filled it yet but I should be able to do that tomorrow.
We left the clinic with JUST enough time to wait for the shuttle, jet over to the proton center, and go right into radiation. Second day running on time. We're going to get spoiled! And after today, her time bumps back to before 1 PM! Yay! That will mean (hopefully) earlier time slots and less time NPO.
We came back to the RMH and she has been watching movies most of the afternoon. She got a great care package today from Aunt Kimmie with some new horse figurines to play with and some new videos so she's in 7th heaven at the moment. Didn't eat much (one corn dog bite and some chocolate milk...that's it!) but she had a poopie. Second day in a row for that!
Now to the tough stuff. I got onto the MD Anderson website last night to check some reports. One of the great things about MDA is that all of her medical reports get posted online and we have access to it. We also have all her appointments and can cancel, reschedule, and request appointments as well as contact anyone on her medical team. It's a really great website. Anyway, I knew that Dr. Wolff had been able to compare the post-surgery (May 29th) MRI with the MDA (July 14th) MRI (finally) and had taken it to the tumor board on Monday. Low and behold, he had posted a report.
And I quote: "The images from May 29th and July 14th were compared and reviewed....Some of the tumor lesions which had been left behind after the surgery became smaller during that time but there were new contrast enhancing lesions and leptomeningeal disease which appears to be new. This has to be judged as a mixed response-progression."
So what that means in lay-person terms is that while it looks like some of the tumor left over from surgery actually got smaller (yay) there are new tumors/lesions forming and the cancer has most definitely spread to the spinal fluid (NOT yay). Dr. Wolff and I had quite the talk about this today. He is still confident that the proton radiation will help shrink the current tumors; however, he realistically does not believe that radiation alone will be enough to fight this. We are looking at a cancer that grows very quickly, very aggressively, and is starting to spread into her spine. Not good. He mentioned a new drug (Velcade) that is used as a chemotherapy agent with many patients who have resistant tumors and this will probably be an option after radiation. We will continue to push the Accutane and possibly Topotecan (we can alternate the two every two weeks) during radiation and then revise the protocol following radiation to include a new mix of meds (some of the latest ones and maybe the Velcade).
It is so hard to hear this. It is so hard to know that while some of this treatment is working, it may not be enough. This is a very tough battle. I have always been a very positive person. Those of you who have known me a long time know that I pretty much try to see the glass as half-full. Always try to put a positive spin on things. And I am stubborn. I rarely give up (to a fault, I'm sure!). But every time we get a report back on an MRI, I keep getting knocked down a peg or two (or ten). Hope is there. Faith is there. But it is a weak candle that threatens to be dowsed at every turn. Here we are back in the middle of the hurricane and my tiki torch is getting drenched.
Please keep the prayer cycle flowing. Please keep the positive energy up (for me and for Roger...and for all of us). And just understand that I may not be the happiest person right now. I live life one day at a time. No faster....Perhaps I will feel differently tomorrow. Today it's a difficult day.
Thank goodness I have an appointment booked with Dr. Bitsko already for my return next week. And my "spa visit" is next Thursday. Much needed, don't you think?
On a funny note, I called the MCV clinic today to try to get Matt Bitsko's email address and check in with him on this issue (I seemed to misplace his email address) and the person that answered the phone said, "That person no longer works here." WHAT????? was the only thing I could say. Since when? What's going on? I didn't recognize the voice or name of the person answering the phone but he said someone from the office would call me back with more information. I just about went into a panic attack. Well, I decided to call Matt's voicemail (I did have that number) and just as I reached it, my call waiting beeped and it was the clinic calling me back. The same person was on the phone and apologized saying that he had gotten confused and had misspoken. Holey moley! Don't tell a woman in crisis that her therapist is no longer available!!! That's just WRONG!
So I guess that's really all I have to report. Sorry for the downer of a post. If you need a laugh, just go to yesterday's and look at the "funny Charlotte sayings" post.
I will add one more that I forgot: Another "latest thing" is that when we go somewhere, she always picks what animals/toys she will bring (usually Mickey but sometimes one other item) but she ALSO decides what I get to bring (mom, you get to bring the tiger and the snoopy!). Oh, gee, thanks. While I'm not already schlepping around the portable DVD player, your favorite books, diapers, and all the other accoutrements and necessities, I need my own stuffed animals, apparently. Ha! I have told her that I can only bring one animal with me and that usually satisifies her. She now has a Sorcerers Apprentice Mickey that she calls "Wizard Mick" but he gets to live on MY bed. She is FUNNY I tell you!!
Ok, that is all,
Rachel
It's been a rough day. Plain and simple.
First of all, it's hotter than Hades here. Heat index was WAY over 100 today and we spent as little time outside as possible. No walk, no exercise for me.
Her appointments went well. The clinic was VERY busy. The busiest I've ever seen it in the lobby (standing room only). They did get us in pretty quickly, though. Then we just waited for Dr. Wolff. Her labs look pretty good. White blood cells are low but everything else is looking ok. So as long as she doesn't get a fever, we're still good.
Had to run through some rigamarole trying to get her Accutane prescription renewed. Still haven't filled it yet but I should be able to do that tomorrow.
We left the clinic with JUST enough time to wait for the shuttle, jet over to the proton center, and go right into radiation. Second day running on time. We're going to get spoiled! And after today, her time bumps back to before 1 PM! Yay! That will mean (hopefully) earlier time slots and less time NPO.
We came back to the RMH and she has been watching movies most of the afternoon. She got a great care package today from Aunt Kimmie with some new horse figurines to play with and some new videos so she's in 7th heaven at the moment. Didn't eat much (one corn dog bite and some chocolate milk...that's it!) but she had a poopie. Second day in a row for that!
Now to the tough stuff. I got onto the MD Anderson website last night to check some reports. One of the great things about MDA is that all of her medical reports get posted online and we have access to it. We also have all her appointments and can cancel, reschedule, and request appointments as well as contact anyone on her medical team. It's a really great website. Anyway, I knew that Dr. Wolff had been able to compare the post-surgery (May 29th) MRI with the MDA (July 14th) MRI (finally) and had taken it to the tumor board on Monday. Low and behold, he had posted a report.
And I quote: "The images from May 29th and July 14th were compared and reviewed....Some of the tumor lesions which had been left behind after the surgery became smaller during that time but there were new contrast enhancing lesions and leptomeningeal disease which appears to be new. This has to be judged as a mixed response-progression."
So what that means in lay-person terms is that while it looks like some of the tumor left over from surgery actually got smaller (yay) there are new tumors/lesions forming and the cancer has most definitely spread to the spinal fluid (NOT yay). Dr. Wolff and I had quite the talk about this today. He is still confident that the proton radiation will help shrink the current tumors; however, he realistically does not believe that radiation alone will be enough to fight this. We are looking at a cancer that grows very quickly, very aggressively, and is starting to spread into her spine. Not good. He mentioned a new drug (Velcade) that is used as a chemotherapy agent with many patients who have resistant tumors and this will probably be an option after radiation. We will continue to push the Accutane and possibly Topotecan (we can alternate the two every two weeks) during radiation and then revise the protocol following radiation to include a new mix of meds (some of the latest ones and maybe the Velcade).
It is so hard to hear this. It is so hard to know that while some of this treatment is working, it may not be enough. This is a very tough battle. I have always been a very positive person. Those of you who have known me a long time know that I pretty much try to see the glass as half-full. Always try to put a positive spin on things. And I am stubborn. I rarely give up (to a fault, I'm sure!). But every time we get a report back on an MRI, I keep getting knocked down a peg or two (or ten). Hope is there. Faith is there. But it is a weak candle that threatens to be dowsed at every turn. Here we are back in the middle of the hurricane and my tiki torch is getting drenched.
Please keep the prayer cycle flowing. Please keep the positive energy up (for me and for Roger...and for all of us). And just understand that I may not be the happiest person right now. I live life one day at a time. No faster....Perhaps I will feel differently tomorrow. Today it's a difficult day.
Thank goodness I have an appointment booked with Dr. Bitsko already for my return next week. And my "spa visit" is next Thursday. Much needed, don't you think?
On a funny note, I called the MCV clinic today to try to get Matt Bitsko's email address and check in with him on this issue (I seemed to misplace his email address) and the person that answered the phone said, "That person no longer works here." WHAT????? was the only thing I could say. Since when? What's going on? I didn't recognize the voice or name of the person answering the phone but he said someone from the office would call me back with more information. I just about went into a panic attack. Well, I decided to call Matt's voicemail (I did have that number) and just as I reached it, my call waiting beeped and it was the clinic calling me back. The same person was on the phone and apologized saying that he had gotten confused and had misspoken. Holey moley! Don't tell a woman in crisis that her therapist is no longer available!!! That's just WRONG!
So I guess that's really all I have to report. Sorry for the downer of a post. If you need a laugh, just go to yesterday's and look at the "funny Charlotte sayings" post.
I will add one more that I forgot: Another "latest thing" is that when we go somewhere, she always picks what animals/toys she will bring (usually Mickey but sometimes one other item) but she ALSO decides what I get to bring (mom, you get to bring the tiger and the snoopy!). Oh, gee, thanks. While I'm not already schlepping around the portable DVD player, your favorite books, diapers, and all the other accoutrements and necessities, I need my own stuffed animals, apparently. Ha! I have told her that I can only bring one animal with me and that usually satisifies her. She now has a Sorcerers Apprentice Mickey that she calls "Wizard Mick" but he gets to live on MY bed. She is FUNNY I tell you!!
Ok, that is all,
Rachel
Wednesday, July 15, 2009
Good Appointments Today
Oi! I keep not learning my lesson.
Had a really long post done and I had even highlighted and copied it just in case but the computer updated itself when I was doing something with Charlotte and restarted, which I guess reset the clipboard. Drat!
Suffice to say we had good appointments today including audiology and a followup with the Children's Cancer Center.
Charlotte will NOT have to be NPO for chemo which means she can eat breakfast.
Her topotecan will be administered via IV just like at MCV.
Her temazolamide (sp?) will be compounded into liquid form. (More chocolate for breakfast!)
She won't have to tace accutane while on proton therapy due to its effect on the skin.
They hadn't read the MRI scans as of her appointment time but it should be available on Mymdanderson.org very soon if not already.
Tonight we are going to the circus at Reliant Stadium courtesy of THE HOUSE. The tree huggin hippie in me says we shouldn't go because of animal rights issues but the exhausted dad in me says my daughter will love it so we're going. I'll try to re-compose the long update later.
Had a really long post done and I had even highlighted and copied it just in case but the computer updated itself when I was doing something with Charlotte and restarted, which I guess reset the clipboard. Drat!
Suffice to say we had good appointments today including audiology and a followup with the Children's Cancer Center.
Charlotte will NOT have to be NPO for chemo which means she can eat breakfast.
Her topotecan will be administered via IV just like at MCV.
Her temazolamide (sp?) will be compounded into liquid form. (More chocolate for breakfast!)
She won't have to tace accutane while on proton therapy due to its effect on the skin.
They hadn't read the MRI scans as of her appointment time but it should be available on Mymdanderson.org very soon if not already.
Tonight we are going to the circus at Reliant Stadium courtesy of THE HOUSE. The tree huggin hippie in me says we shouldn't go because of animal rights issues but the exhausted dad in me says my daughter will love it so we're going. I'll try to re-compose the long update later.
Tuesday, June 30, 2009
Long and Busy Days
Did you miss us?
It's hard to believe that our last post was on Sunday. These days have been long and full of action (and tiring...what else is new?).
Trip to the clinic yesterday was L-O-N-G and frustrating for daddy. Her numbers are low but not horrible so she was able to get both medicines. Unfortunately, she refused to take the temozolamide in any type of food no matter how much we tried to convince her that it wouldn't taste bad (and it shouldn't). She's way too smart for us now and knows that when we bring her food or drink that is unopened, it is already "tainted" with something.
Anyway, Roger took the prescription to the compounding pharmacy and they made a concoction. Fortunately, we only have to do this medicine once a day until Friday (for now). The topotecan infusion also seems to be going well.
Oh, and she's still having problems with no poop. I think it might be the Zofran that's stopping her up so we're back on the mag citrate regimen.
She's been very quiet and mellow lately. She definitely gets tired quickly. I took her to OT today and she worked hard. Then we had to go back to the orthotic place to get her brace readjusted. The PT wants her to go back to wearing the brace again just to help support her muscles. They are still carrying a lot of tension and it should help with the overcompensation.
In other news:
We found out that BOTH MD Anderson AND Shands Jacksonville are in our insurance network AND they should be able to find us radiation oncologists in-network at both places as well AND the insurance will cover the proton beam radiation (yay). This opens up a whole host of possibilities and I think MD Anderson is back on the table for options. While we know we would have great family/friend support in Jacksonville, MD Anderson is already going to be fully supportive of her protocol (since they created it) and we wouldn't have to get to know a whole host of new physicians. Plus, we know they will accept her in TX. Not so sure about FL yet.
SOOOO...Roger and I have been doing some talking and we will talk some more tonight. Look for a big announcement tomorrow I guess.
The other potentially bad news is that wherever they go, they may want her there as early as the end of next week. That's right. We may have to reschedule her birthday party. Stay tuned and we will let you know. Kind of a bummer but we're learning how to go with the flow....
Meanwhile we have also been looking at the transportation logistics. Odds are, one of us (probably Roger) would fly out to (wherever) initially with Charlotte and we would switch places about every two weeks. Whoever is in VA would cover RNR and hold down the fort. The other person would handle Charlotte and all the medical stuff. Oh joy. It really doesn't make me happy as I know that part of why and how we have survived all of this so far is because Roger and I make a great team. This goes for parenting as well as all the business stuff. Potentially, Roger and I may go over 6 weeks without some quality time together and we haven't done that since before we got married (let alone had our lives in crisis). Yes, we know we will need lots of support and we will plan to seek it out!!!
Fortunately we have some airline credits saved up on AirTran that will probably help with tickets and the fundraising efforts will definitely help with travel expenses. We will be investigating lodging options (apartments, Ronald McDonald House, etc.) once we make a final decision.
So that's my update for now. More to come. I'm hungry and dinner (cooked by the 'rents) is calling...
Rachel
It's hard to believe that our last post was on Sunday. These days have been long and full of action (and tiring...what else is new?).
Trip to the clinic yesterday was L-O-N-G and frustrating for daddy. Her numbers are low but not horrible so she was able to get both medicines. Unfortunately, she refused to take the temozolamide in any type of food no matter how much we tried to convince her that it wouldn't taste bad (and it shouldn't). She's way too smart for us now and knows that when we bring her food or drink that is unopened, it is already "tainted" with something.
Anyway, Roger took the prescription to the compounding pharmacy and they made a concoction. Fortunately, we only have to do this medicine once a day until Friday (for now). The topotecan infusion also seems to be going well.
Oh, and she's still having problems with no poop. I think it might be the Zofran that's stopping her up so we're back on the mag citrate regimen.
She's been very quiet and mellow lately. She definitely gets tired quickly. I took her to OT today and she worked hard. Then we had to go back to the orthotic place to get her brace readjusted. The PT wants her to go back to wearing the brace again just to help support her muscles. They are still carrying a lot of tension and it should help with the overcompensation.
In other news:
We found out that BOTH MD Anderson AND Shands Jacksonville are in our insurance network AND they should be able to find us radiation oncologists in-network at both places as well AND the insurance will cover the proton beam radiation (yay). This opens up a whole host of possibilities and I think MD Anderson is back on the table for options. While we know we would have great family/friend support in Jacksonville, MD Anderson is already going to be fully supportive of her protocol (since they created it) and we wouldn't have to get to know a whole host of new physicians. Plus, we know they will accept her in TX. Not so sure about FL yet.
SOOOO...Roger and I have been doing some talking and we will talk some more tonight. Look for a big announcement tomorrow I guess.
The other potentially bad news is that wherever they go, they may want her there as early as the end of next week. That's right. We may have to reschedule her birthday party. Stay tuned and we will let you know. Kind of a bummer but we're learning how to go with the flow....
Meanwhile we have also been looking at the transportation logistics. Odds are, one of us (probably Roger) would fly out to (wherever) initially with Charlotte and we would switch places about every two weeks. Whoever is in VA would cover RNR and hold down the fort. The other person would handle Charlotte and all the medical stuff. Oh joy. It really doesn't make me happy as I know that part of why and how we have survived all of this so far is because Roger and I make a great team. This goes for parenting as well as all the business stuff. Potentially, Roger and I may go over 6 weeks without some quality time together and we haven't done that since before we got married (let alone had our lives in crisis). Yes, we know we will need lots of support and we will plan to seek it out!!!
Fortunately we have some airline credits saved up on AirTran that will probably help with tickets and the fundraising efforts will definitely help with travel expenses. We will be investigating lodging options (apartments, Ronald McDonald House, etc.) once we make a final decision.
So that's my update for now. More to come. I'm hungry and dinner (cooked by the 'rents) is calling...
Rachel
Monday, June 22, 2009
First IV Infusion of Topotecan
Back to reality,
Rachel gets to take Charlotte to MCV today for her first IV infusion of Topotecal. This will be an every weekday event for many many months. There's an oral version but I sincerely doubt we would be able to get CJ to take it.
I'm headed up to DC today to be in a panel discussion about jazz vocal ensembles. Should be interesting. That means, however, that Rachel will be doing most of the work today. Keep her in your thoughts. Thank goodness for Phyllis and Kolbey.
Have a good day,
Rog
Update:
OK, So Rachel gets there and they DIDN'T HAVE CJ ON THE LIST!!! URGH! ARGH!!! DUFRNVG:SKSAD Hds!!!!!!!
How many times have we said it? The main thing keeping MCV back from beeing world class is communication. The CB community is full of stories of mis-communications at MCV.
Unfortunately, it isn't isolated by any means. There was a story on NPR just this morning about patient advocates and how necessary they are because of wide spread communication problems within the nation's hospitals. If you're involved with healthcare reform, there's one area that should be tackled first!
Breathe! Gotta go "panelize!"
Update:
Yes, more than a TAD frustrating today. We get to the clinic right before 10 AM and the receptionist says "you're not on the schedule". I told her that we had been told by Dr. Khan to be there by 10 and that he was going to put the orders in first thing in the morning for her medicine. I also told her that April (our nurse) also knew what was going on. She said April was in a meeting.
SOOOO....they work on getting us in. We actually got into the clinic before 10:30, got her vitals, etc. but then we waited...and waited. About 11 (after they had drawn her labs), I asked the nurse what kind of time frame she thought we were looking at and she said they were waiting on the order to come up from Dr. Khan (WHAT?????!!!!) I informed them that I was supposed to be at work by 12:30 and I was trying to figure out exactly what I was supposed to do. Not happy.
So I proceeded to leave the clinic (since I get ZERO cell phone reception in there) and make some phone calls. Fortunately members of our fabulous RNR staff saved the day and covered my class and camp...since I didn't LEAVE clinic till 2 PM.
In the meantime...funny story: I came out of our room as Charlotte was watching movies to make all of our appointments for the remainder of the week. One of the receptionists was flagging down Matt Bitsko (the psychologist) to get a spider that had invaded their office. They were asking him to "kill it". Well, he wanted nothing to do with the spider but I told him if somebody would get me a cup, I would take care of her humanely. I don't kill spiders. Bad karma...
The receptionists thought I was nuts but I scooped up Miss Spider (she was about the size of a half dollar) in a styrofoam cup and escorted her down two flights of stairs, out the building, and into some bushes. My good deed for the day and a chance to get some fresh air.
Charlotte finally got the Topotecan about 1 PM (preceded by Zofran) and then we were able to leave the clinic. As with many of her meds, this one can cause nausea, vomiting, diarrhea, and low blood counts so we will see what happens. Oh joy.
Now I'm at Romp n' Roll and looks like I will be covering Roger's classes tonight as he got stuck in the mess that is DC traffic.
Let's hope tomorrow's clinic visit will go a bit smoother.
Rachel gets to take Charlotte to MCV today for her first IV infusion of Topotecal. This will be an every weekday event for many many months. There's an oral version but I sincerely doubt we would be able to get CJ to take it.
I'm headed up to DC today to be in a panel discussion about jazz vocal ensembles. Should be interesting. That means, however, that Rachel will be doing most of the work today. Keep her in your thoughts. Thank goodness for Phyllis and Kolbey.
Have a good day,
Rog
Update:
OK, So Rachel gets there and they DIDN'T HAVE CJ ON THE LIST!!! URGH! ARGH!!! DUFRNVG:SKSAD Hds!!!!!!!
How many times have we said it? The main thing keeping MCV back from beeing world class is communication. The CB community is full of stories of mis-communications at MCV.
Unfortunately, it isn't isolated by any means. There was a story on NPR just this morning about patient advocates and how necessary they are because of wide spread communication problems within the nation's hospitals. If you're involved with healthcare reform, there's one area that should be tackled first!
Breathe! Gotta go "panelize!"
Update:
Yes, more than a TAD frustrating today. We get to the clinic right before 10 AM and the receptionist says "you're not on the schedule". I told her that we had been told by Dr. Khan to be there by 10 and that he was going to put the orders in first thing in the morning for her medicine. I also told her that April (our nurse) also knew what was going on. She said April was in a meeting.
SOOOO....they work on getting us in. We actually got into the clinic before 10:30, got her vitals, etc. but then we waited...and waited. About 11 (after they had drawn her labs), I asked the nurse what kind of time frame she thought we were looking at and she said they were waiting on the order to come up from Dr. Khan (WHAT?????!!!!) I informed them that I was supposed to be at work by 12:30 and I was trying to figure out exactly what I was supposed to do. Not happy.
So I proceeded to leave the clinic (since I get ZERO cell phone reception in there) and make some phone calls. Fortunately members of our fabulous RNR staff saved the day and covered my class and camp...since I didn't LEAVE clinic till 2 PM.
In the meantime...funny story: I came out of our room as Charlotte was watching movies to make all of our appointments for the remainder of the week. One of the receptionists was flagging down Matt Bitsko (the psychologist) to get a spider that had invaded their office. They were asking him to "kill it". Well, he wanted nothing to do with the spider but I told him if somebody would get me a cup, I would take care of her humanely. I don't kill spiders. Bad karma...
The receptionists thought I was nuts but I scooped up Miss Spider (she was about the size of a half dollar) in a styrofoam cup and escorted her down two flights of stairs, out the building, and into some bushes. My good deed for the day and a chance to get some fresh air.
Charlotte finally got the Topotecan about 1 PM (preceded by Zofran) and then we were able to leave the clinic. As with many of her meds, this one can cause nausea, vomiting, diarrhea, and low blood counts so we will see what happens. Oh joy.
Now I'm at Romp n' Roll and looks like I will be covering Roger's classes tonight as he got stuck in the mess that is DC traffic.
Let's hope tomorrow's clinic visit will go a bit smoother.
Thursday, June 18, 2009
Her Protocol
Very quick update,
We're going in for the latest LP (spinal tap) this morning and hopefully we'll get to talk to Dr. Kahn about the next move.
If everything goes smoothly and there are no complications, Rachel and I are headed to the Capital Ale House to see a favorite of ours VINX! He's a percussionist/vocalist who was discovered quite by accident when Sting was passing by a club where VINX was playing. Sting heard the very cool music, pulled up short, and went to listen. He eventually produced VINX's first album. I stumbled upon it in college and Choosy Mama from his second album, "I Love My Job," has been used as sort of a theme song in our family.
Tomorrow is the award ceremony at Chick-fil-a at VCM and I think it would be very cool if the fire marshall closed the place down due to too many people! Just a thought. I'm actually feeling a little apprehensive about the LP today. Hope I can celebrate/appreciate it properly tomorrow
Gotta go wake up the princess.
Update:
We are back from the clinic. We were only there for 6 hours today. Sheesh. At least we got some answers.
First order of business was the spinal tap. They asked us to be there by 9 just in case anesthesia was ready early but they weren't so the spinal tap didn't happen until about 11 or so. Let's all remember that Charlotte had had nothing to eat since about 8 PM the night before and had to be NPO for the anesthesia. She really didn't complain too much but as soon as Charlotte was "out" Roger went downstairs to nab some (what else) Chick Fil A.
Speaking of which, y'all come on out tomorrow at 5:30 to the Chick-Fil-A at Virginia Center Marketplace to honor our Great Richmond DAD! Yay!
Back to the story...so as soon as they gave her the sleepy juice, she was pretty much out of it. It was hilarious to watch her engaged in converstaion and then, midsentence, to just flop over and go to sleep.
After the tap, we waited for her to rouse. Dr. Tye and Joanne came by to check in with her. Dr. Khan had taken out her stitches while she was out for the spinal tap so her head looks GREAT. Then Dr. Khan came back with (drum roll, please) her protocol. They are looking at starting some oral and IV medications on an outpatient basis for a few weeks. She will be on Accutane (yes, the acne drug), Topotecan (she will have to have this via IV 5 days a week in clinic because of the dosage needed), and eventually Temozolamide (another oral med). All of these meds carry their own share of side effects, all similar to many of the drugs she has been on before. The goal with all of these drugs will be to neutralize the malignant properties of the tumor (the Accutane does this) and stop the tumor growth.
We are also going to try to get her back into a somewhat regular PT/OT schedule in the next few weeks.
Radiation is tentatively scheduled to start mid-July and will be for 6-8 weeks. Pending results of the spinal tap (and assuming it is clear), we will start to coordinate with our new hospital for radiation. We agree with Dr. Khan that while many of the long term benefits of proton beam radiation are not well known (mainly because it is such a new therapy), it is worth the effort and risk given her age and all the potential benefits. He is going to work on checking with insurance and participating hospitals. She will actually stay on the other three chemotherapy drugs throughout radiation and then will continue them after radiation as well. There is a road map laid out week-by-week with all of the different drugs and when she takes them.
At this time, we don't have high dose chemo on the plan but we have to see how the tumor reacts to radiation and some of these other agents. Potentially, she could be on these medications for up to two years before treatment would be "done" BUT if we are "just" dealing with outpatient meds and an infusion or two, that is definitely more do-able than constant hospitalizations. That is good news in my mind.
In other news, as we realized that we now have a treatment timeline, we figured that we can now plan the Princess's birthday. while we were waiting in clinic, we discussed dates and I think we are going to have a party on July 10th (a Friday) sometime in the evening. Charlotte decided that she wants to have a Tinkerbell party with an ice cream cake and she wants to have the party at Romp n' Roll. So here's your official invitation:
EVERYONE that would like to come is invited to celebrate Charlotte's 4th birthday on Friday July 10th at 6 PM at Romp n' Roll. We will have ice cream cake and some food. Please no presents. This is not a fundraiser and we don't need any gifts. We would just like everyone to come out and celebrate. Hope to see you there!!!
In other event news, the Home Based Business Bazaar will be at St. Ann's Catholic Church in Ashland on June 27th. This is a great opportunity to find that perfect gift or get your Christmas shopping done early. Many home-based businesses including Pampered Chef, Arbonne, the Happy Gardener, Avon, PartyLite candles, and others will be represented and will be donating a portion of their sales to Charlotte. There will also be a silent auction.
Also on the calendar is the NEXT Rompy's Concert Series on July 9th (Charlotte's actual birthday) at Chick Fil A/Romp n' Roll. Chris Fuller and Charles Arthur will entertain and we will have the blood bank there as well as a collection for the Central VA Food Bank.
I think that's it for now. Roger and I need to get freshened up for our date with VINX. Very exciting!
I feel a huge weight lifted just to have some answers and know that we will begin treatment tomorrow.
Rachel
We're going in for the latest LP (spinal tap) this morning and hopefully we'll get to talk to Dr. Kahn about the next move.
If everything goes smoothly and there are no complications, Rachel and I are headed to the Capital Ale House to see a favorite of ours VINX! He's a percussionist/vocalist who was discovered quite by accident when Sting was passing by a club where VINX was playing. Sting heard the very cool music, pulled up short, and went to listen. He eventually produced VINX's first album. I stumbled upon it in college and Choosy Mama from his second album, "I Love My Job," has been used as sort of a theme song in our family.
Tomorrow is the award ceremony at Chick-fil-a at VCM and I think it would be very cool if the fire marshall closed the place down due to too many people! Just a thought. I'm actually feeling a little apprehensive about the LP today. Hope I can celebrate/appreciate it properly tomorrow
Gotta go wake up the princess.
Update:
We are back from the clinic. We were only there for 6 hours today. Sheesh. At least we got some answers.
First order of business was the spinal tap. They asked us to be there by 9 just in case anesthesia was ready early but they weren't so the spinal tap didn't happen until about 11 or so. Let's all remember that Charlotte had had nothing to eat since about 8 PM the night before and had to be NPO for the anesthesia. She really didn't complain too much but as soon as Charlotte was "out" Roger went downstairs to nab some (what else) Chick Fil A.
Speaking of which, y'all come on out tomorrow at 5:30 to the Chick-Fil-A at Virginia Center Marketplace to honor our Great Richmond DAD! Yay!
Back to the story...so as soon as they gave her the sleepy juice, she was pretty much out of it. It was hilarious to watch her engaged in converstaion and then, midsentence, to just flop over and go to sleep.
After the tap, we waited for her to rouse. Dr. Tye and Joanne came by to check in with her. Dr. Khan had taken out her stitches while she was out for the spinal tap so her head looks GREAT. Then Dr. Khan came back with (drum roll, please) her protocol. They are looking at starting some oral and IV medications on an outpatient basis for a few weeks. She will be on Accutane (yes, the acne drug), Topotecan (she will have to have this via IV 5 days a week in clinic because of the dosage needed), and eventually Temozolamide (another oral med). All of these meds carry their own share of side effects, all similar to many of the drugs she has been on before. The goal with all of these drugs will be to neutralize the malignant properties of the tumor (the Accutane does this) and stop the tumor growth.
We are also going to try to get her back into a somewhat regular PT/OT schedule in the next few weeks.
Radiation is tentatively scheduled to start mid-July and will be for 6-8 weeks. Pending results of the spinal tap (and assuming it is clear), we will start to coordinate with our new hospital for radiation. We agree with Dr. Khan that while many of the long term benefits of proton beam radiation are not well known (mainly because it is such a new therapy), it is worth the effort and risk given her age and all the potential benefits. He is going to work on checking with insurance and participating hospitals. She will actually stay on the other three chemotherapy drugs throughout radiation and then will continue them after radiation as well. There is a road map laid out week-by-week with all of the different drugs and when she takes them.
At this time, we don't have high dose chemo on the plan but we have to see how the tumor reacts to radiation and some of these other agents. Potentially, she could be on these medications for up to two years before treatment would be "done" BUT if we are "just" dealing with outpatient meds and an infusion or two, that is definitely more do-able than constant hospitalizations. That is good news in my mind.
In other news, as we realized that we now have a treatment timeline, we figured that we can now plan the Princess's birthday. while we were waiting in clinic, we discussed dates and I think we are going to have a party on July 10th (a Friday) sometime in the evening. Charlotte decided that she wants to have a Tinkerbell party with an ice cream cake and she wants to have the party at Romp n' Roll. So here's your official invitation:
EVERYONE that would like to come is invited to celebrate Charlotte's 4th birthday on Friday July 10th at 6 PM at Romp n' Roll. We will have ice cream cake and some food. Please no presents. This is not a fundraiser and we don't need any gifts. We would just like everyone to come out and celebrate. Hope to see you there!!!
In other event news, the Home Based Business Bazaar will be at St. Ann's Catholic Church in Ashland on June 27th. This is a great opportunity to find that perfect gift or get your Christmas shopping done early. Many home-based businesses including Pampered Chef, Arbonne, the Happy Gardener, Avon, PartyLite candles, and others will be represented and will be donating a portion of their sales to Charlotte. There will also be a silent auction.
Also on the calendar is the NEXT Rompy's Concert Series on July 9th (Charlotte's actual birthday) at Chick Fil A/Romp n' Roll. Chris Fuller and Charles Arthur will entertain and we will have the blood bank there as well as a collection for the Central VA Food Bank.
I think that's it for now. Roger and I need to get freshened up for our date with VINX. Very exciting!
I feel a huge weight lifted just to have some answers and know that we will begin treatment tomorrow.
Rachel
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