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 Dr. Matt Bitsko. Show all posts
Showing posts with label Dr. Matt Bitsko. Show all posts
Thursday, August 13, 2009
Thursday, August 6, 2009
Facts about Proton Radiation and an Update
Some fun facts about Proton Radiation:
1. The first attempts to use proton radiation for cancer/medical treatment began in the 1950s but it was only in the last decade that it has become possible to develop proton beam facilities in conjunction with established medical centers.
2. Radiation is delivered through large gantries. Each gantry weighs 190 tons, sits three stories tall, and is 35 feet in diameter.
3. 2/3 of the proton therapy center is build below ground level. The walls are 8 feet thick and 50 feet high. A 20-story building could be constructed with the amount of concrete poured for the proton therapy center (and it's only 3 stories tall!).
4. The equipment for the machinery weighed 1600 tons when it arrived from Japan at the Port of Houston and it took a 31-truck caravan to bring it to the construction site.
******************************************
On a more personal note:
She's had a good day. She did start losing her hair today. Lots of little hairs on the pillow this morning when she woke up. It's falling out in little bits and clumps, and there is obviously not a whole lot to fall out anyway.
The major issue of the day seems to be getting her accutane prescription filled. For those who do not know, Accutane is usually an acne drug and it is HIGHLY dangerous to unborn babies. Causes very severe birth defects. For that reason, any female of childbearing age who is on the drug must be on TWO forms of birth control AND must take a pregnancy test each month. In order to prescribe the drug, physicians must be registered through this system called iPledge and you can't get the prescription except through an approved provider. Furthermore, as a patient you have to register on this iPledge site. If you're of childbearing age, you have to take a test so that they know that you understand the risks of pregnancy, etc. Obviously, we don't have to do that for Charlotte but we do still have to follow all the other rules. Well, we ran into a few glitches trying to get her prescription refilled here:
Glitch #1: The prescription was originally written in VA under Dr. Khan so in order to transfer the prescription and have Dr. Wolff write the script, I had to go on to the iPledge site and transfer to Dr. Wolff as my primary doctor. It took us forever just to figure out that we had to do this.
Glitch #2: When Dr. Wolff went in to approve me (well, Charlotte) as a patient, he couldn't find her in the system. We worked on this all day (in and out of treatments) and while the system kept telling me my application was in process and awaiting doctor approval, Dr. Wolff couldn't seem to find Charlotte as his patient waiting approval. We were lost in cyberspace. It only took me coming back to the clinic after radiation and both of us getting on the telephone help line with the iPledge folks to get it resolved.
Glitch #3: I took the prescription to the MD Anderson pharmacy to get it filled. At this point, it was after 4 PM. They said if I wanted the prescription compounded into liquid form (I did) it would take almost 2 hours. So we headed back to RMH to wait. Meanwhile, Charlotte ate some dinner and we've been relaxing. I go to call the pharmacy about quarter to 6 to see if it's almost ready so we can walk back to MDA and the pharmacist tells me that she tried to call me (obviously called the home number which doesn't help much) and the insurance is not approving the prescription. No idea why since they approved it before. It may be because we are trying to get it compounded into liquid form. Needless to say, it will cost $300+. Basically, I don't care about the cost at this point, I just want the meds. She says, "Do you need this today?" and I said, "YES!!!". She didn't get her morning dose and I'm not waiting any longer to get this stuff into her. So she said it would be another hour...or so. Sheesh.
So we will be heading back over to MDA in a bit. At least the weather will have cooled a bit so we can walk. Fresh air and exercise will do us good.
Otherwise, everything is ok. As ok as it can be. Thanks for all the positive vibes and support we have been getting. It really means a lot. One step. One day at a time. That's all I can do. Dr. Bitsko called me this morning and we talked so that was helpful. One more day of treatment till the weekend. And two more days till we get to see DADDY! Yay!
1. The first attempts to use proton radiation for cancer/medical treatment began in the 1950s but it was only in the last decade that it has become possible to develop proton beam facilities in conjunction with established medical centers.
2. Radiation is delivered through large gantries. Each gantry weighs 190 tons, sits three stories tall, and is 35 feet in diameter.
3. 2/3 of the proton therapy center is build below ground level. The walls are 8 feet thick and 50 feet high. A 20-story building could be constructed with the amount of concrete poured for the proton therapy center (and it's only 3 stories tall!).
4. The equipment for the machinery weighed 1600 tons when it arrived from Japan at the Port of Houston and it took a 31-truck caravan to bring it to the construction site.
******************************************
On a more personal note:
She's had a good day. She did start losing her hair today. Lots of little hairs on the pillow this morning when she woke up. It's falling out in little bits and clumps, and there is obviously not a whole lot to fall out anyway.
The major issue of the day seems to be getting her accutane prescription filled. For those who do not know, Accutane is usually an acne drug and it is HIGHLY dangerous to unborn babies. Causes very severe birth defects. For that reason, any female of childbearing age who is on the drug must be on TWO forms of birth control AND must take a pregnancy test each month. In order to prescribe the drug, physicians must be registered through this system called iPledge and you can't get the prescription except through an approved provider. Furthermore, as a patient you have to register on this iPledge site. If you're of childbearing age, you have to take a test so that they know that you understand the risks of pregnancy, etc. Obviously, we don't have to do that for Charlotte but we do still have to follow all the other rules. Well, we ran into a few glitches trying to get her prescription refilled here:
Glitch #1: The prescription was originally written in VA under Dr. Khan so in order to transfer the prescription and have Dr. Wolff write the script, I had to go on to the iPledge site and transfer to Dr. Wolff as my primary doctor. It took us forever just to figure out that we had to do this.
Glitch #2: When Dr. Wolff went in to approve me (well, Charlotte) as a patient, he couldn't find her in the system. We worked on this all day (in and out of treatments) and while the system kept telling me my application was in process and awaiting doctor approval, Dr. Wolff couldn't seem to find Charlotte as his patient waiting approval. We were lost in cyberspace. It only took me coming back to the clinic after radiation and both of us getting on the telephone help line with the iPledge folks to get it resolved.
Glitch #3: I took the prescription to the MD Anderson pharmacy to get it filled. At this point, it was after 4 PM. They said if I wanted the prescription compounded into liquid form (I did) it would take almost 2 hours. So we headed back to RMH to wait. Meanwhile, Charlotte ate some dinner and we've been relaxing. I go to call the pharmacy about quarter to 6 to see if it's almost ready so we can walk back to MDA and the pharmacist tells me that she tried to call me (obviously called the home number which doesn't help much) and the insurance is not approving the prescription. No idea why since they approved it before. It may be because we are trying to get it compounded into liquid form. Needless to say, it will cost $300+. Basically, I don't care about the cost at this point, I just want the meds. She says, "Do you need this today?" and I said, "YES!!!". She didn't get her morning dose and I'm not waiting any longer to get this stuff into her. So she said it would be another hour...or so. Sheesh.
So we will be heading back over to MDA in a bit. At least the weather will have cooled a bit so we can walk. Fresh air and exercise will do us good.
Otherwise, everything is ok. As ok as it can be. Thanks for all the positive vibes and support we have been getting. It really means a lot. One step. One day at a time. That's all I can do. Dr. Bitsko called me this morning and we talked so that was helpful. One more day of treatment till the weekend. And two more days till we get to see DADDY! Yay!
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
Thursday, July 16, 2009
Some Bad, But Not Unexpected News
Hi all,
Huge post ahead.
Some bad, but not unexpected news: While Charlotte was in her neurocognitive assessment playing games with the two ladies (whose names I've already forgotten, sorry), I got to look at the latest MRI scans with Dr. Vats (Dr. Wolfe's colleague). We didn't have the post-3rd surgery scan for comparison but the tumor is definitely still there in bits and pieces and possibly still growing. I'm going on the assumption that it's growing.
Dr. Vats also said that there was evidence that it has spread into the upper spine (again, not altogether unexpected) although the computer he used to show me the scans didn't have enough resolution to pick up what he saw on his own computer so I didn’t actually see it. I’ll take his word for it.
Now, before anyone totally freaks out, it's certainly not good news by any stretch of the imagination but the proton radiation protocol has already accounted for the possibility and now we know that it was necessary to plan for head and spine after all. That starts next Tuesday.
Dr. Vats was still very positive and confident that we’re headed down the right path. He did say that he would bring Charlotte’s case before the “tumor board” on Monday to elicit opinions and also that he would explore the possibility of injecting chemo drugs directly into her spine via an LP once every two weeks, adding to Dr. Tye’s recommendation of “throwing the book at it.”
On a good note, CJ wowed them in the assessment with her vocabulary. They’ll get back to us with the official results of the testing as soon as they tally up everything. Dr. Vats was also happy with the recovery of CJ’s left side.
I’ve had several messages from people worrying about how I’m doing emotionally and all that. First off, thanks for the concern. It does mean a lot to me to have so many folks concerned about us.
I’m hanging in there. I’m nowhere close to thriving and I have my off moments but I feel like I’m dealing pretty well. I’ve been thinking very deep and hard about my/our situation and I feel about as focused as I’ve ever felt in my entire life. Crisis sure brings perspective down to a pinpoint, doesn’t it? Nothing else matters besides my daughter’s fight against the cancer. If I have any concerns for myself, it’s how I will deal with things after everything plays out (however it plays out). Different scenarios (best and worst) run through my head all the time but so far they haven’t distracted me from the here and now. I guess I’ll have to figure that out when I get there.
I can’t really speak for Rachel but I think she’s doing a little better. Today’s news didn’t help but she’s using her resources at home, MCV (mostly Dr. Matt), and within the circle of friends & family, and finding more solid footing. Romp n’ Roll is keeping her occupied (my turn when we switch) and Meredith orchestrated a day at Diva’s for her so that will help too! Anyone wanting to donate to that cause can send checks to me.
We will need support in Houston as the proton therapy and chemo kicks in and leaves CJ less functional. My dad has offered to come out as early as next Wednesday and stay for about a week. If anyone was planning to come out, we could use someone after that. Don’t ask me when we want you; tell me when you’re available and willing to come out between then and the end of August and I’ll plug you into the schedule.
The Beazleys have been fabulous and will continue to be. Merrilee is watching CJ tonight so I can go see Harry Potter (Brought my “Muggle” t-shirt and everything, just in case!) and they’re letting me borrow a car this weekend in the guise of having me take them to the airport tomorrow.
Now back to the important stuff, Charlotte. We went to the circus last night and although she liked the pretty horses and she got downright excited to see the elephants, she didn’t make it to the intermission. She was pretty mellow through the pre-show stuff but perked up when the lights went down. Unfortunately they were definitely trying to be Cirque de Parfait which didn’t work in such a large venue and they lost CJ pretty early on. The ringmaster was actually a pretty good Broadway-style singer from Houston who had been with the circus for a couple years now. There was a lot more song and dance stuff than I remember from the one time I saw Ringling Bros. before. There was a moderately silly Jets vs Sharks thing during the Act I finale but one thing really grabbed me. One group of clown “henchmen” came out bouncing on what I can only describe as innertubes with saddles. They did some very cool flips and such off and onto them and now I want one for my own. They also did the motorcycles in the ball trick but they kept adding more and more riders until there were 7 in there. I can’t for the life of me figure out how they all fit in there without knocking each other’s ankles.
Throughout Act I, Charlotte became more and more clingy and finally just climbed onto my lap facing me, put her head on my shoulder and zonked. She slept through the extremely loud finale so I just grabbed everything and headed out when the lights came up for intermission. I was quite the site heading up the stairs with CJ’s unconscious body in one hand, the stroller in the other, and the backpack on my back. At least she was awake on the way down to the seats.
I was going to just call a cab and go back to The House but I just happened to run into the manager of the outing and she called the bus to come get us.
A nice side line, the bus driver told me her story as we rode back to The House last night. Her son was diagnosed with leukemia back in 2000 and spent the next 4 years being treated at MDAnderson. She lived in The House for 4 years while he was treated. She gave up everything to be with him including a successful business and most of her friends and family back home. He’s now 18 and going into college and she now drives the bus for The House. She feels such a connection to the families here that she’s always willing to come in on her day off to help or cover shifts or whatever it takes to make the families’ lives just a little easier. Yet another inspirational story out of a sea of them.
So keep the positive vibes aimed at Houston (with a little left over for Richmond). We’re keeping up the good fight from our end.
Love to everyone,
Rog, Rach, & CJ
p.s. I'm using Facebook for photos and Caringbridge for updates (mostly). If you don't have Facebook and want to see pics, please have someone show you. I don't want to fool with photobucket or the others.
Huge post ahead.
Some bad, but not unexpected news: While Charlotte was in her neurocognitive assessment playing games with the two ladies (whose names I've already forgotten, sorry), I got to look at the latest MRI scans with Dr. Vats (Dr. Wolfe's colleague). We didn't have the post-3rd surgery scan for comparison but the tumor is definitely still there in bits and pieces and possibly still growing. I'm going on the assumption that it's growing.
Dr. Vats also said that there was evidence that it has spread into the upper spine (again, not altogether unexpected) although the computer he used to show me the scans didn't have enough resolution to pick up what he saw on his own computer so I didn’t actually see it. I’ll take his word for it.
Now, before anyone totally freaks out, it's certainly not good news by any stretch of the imagination but the proton radiation protocol has already accounted for the possibility and now we know that it was necessary to plan for head and spine after all. That starts next Tuesday.
Dr. Vats was still very positive and confident that we’re headed down the right path. He did say that he would bring Charlotte’s case before the “tumor board” on Monday to elicit opinions and also that he would explore the possibility of injecting chemo drugs directly into her spine via an LP once every two weeks, adding to Dr. Tye’s recommendation of “throwing the book at it.”
On a good note, CJ wowed them in the assessment with her vocabulary. They’ll get back to us with the official results of the testing as soon as they tally up everything. Dr. Vats was also happy with the recovery of CJ’s left side.
I’ve had several messages from people worrying about how I’m doing emotionally and all that. First off, thanks for the concern. It does mean a lot to me to have so many folks concerned about us.
I’m hanging in there. I’m nowhere close to thriving and I have my off moments but I feel like I’m dealing pretty well. I’ve been thinking very deep and hard about my/our situation and I feel about as focused as I’ve ever felt in my entire life. Crisis sure brings perspective down to a pinpoint, doesn’t it? Nothing else matters besides my daughter’s fight against the cancer. If I have any concerns for myself, it’s how I will deal with things after everything plays out (however it plays out). Different scenarios (best and worst) run through my head all the time but so far they haven’t distracted me from the here and now. I guess I’ll have to figure that out when I get there.
I can’t really speak for Rachel but I think she’s doing a little better. Today’s news didn’t help but she’s using her resources at home, MCV (mostly Dr. Matt), and within the circle of friends & family, and finding more solid footing. Romp n’ Roll is keeping her occupied (my turn when we switch) and Meredith orchestrated a day at Diva’s for her so that will help too! Anyone wanting to donate to that cause can send checks to me.
We will need support in Houston as the proton therapy and chemo kicks in and leaves CJ less functional. My dad has offered to come out as early as next Wednesday and stay for about a week. If anyone was planning to come out, we could use someone after that. Don’t ask me when we want you; tell me when you’re available and willing to come out between then and the end of August and I’ll plug you into the schedule.
The Beazleys have been fabulous and will continue to be. Merrilee is watching CJ tonight so I can go see Harry Potter (Brought my “Muggle” t-shirt and everything, just in case!) and they’re letting me borrow a car this weekend in the guise of having me take them to the airport tomorrow.
Now back to the important stuff, Charlotte. We went to the circus last night and although she liked the pretty horses and she got downright excited to see the elephants, she didn’t make it to the intermission. She was pretty mellow through the pre-show stuff but perked up when the lights went down. Unfortunately they were definitely trying to be Cirque de Parfait which didn’t work in such a large venue and they lost CJ pretty early on. The ringmaster was actually a pretty good Broadway-style singer from Houston who had been with the circus for a couple years now. There was a lot more song and dance stuff than I remember from the one time I saw Ringling Bros. before. There was a moderately silly Jets vs Sharks thing during the Act I finale but one thing really grabbed me. One group of clown “henchmen” came out bouncing on what I can only describe as innertubes with saddles. They did some very cool flips and such off and onto them and now I want one for my own. They also did the motorcycles in the ball trick but they kept adding more and more riders until there were 7 in there. I can’t for the life of me figure out how they all fit in there without knocking each other’s ankles.
Throughout Act I, Charlotte became more and more clingy and finally just climbed onto my lap facing me, put her head on my shoulder and zonked. She slept through the extremely loud finale so I just grabbed everything and headed out when the lights came up for intermission. I was quite the site heading up the stairs with CJ’s unconscious body in one hand, the stroller in the other, and the backpack on my back. At least she was awake on the way down to the seats.
I was going to just call a cab and go back to The House but I just happened to run into the manager of the outing and she called the bus to come get us.
A nice side line, the bus driver told me her story as we rode back to The House last night. Her son was diagnosed with leukemia back in 2000 and spent the next 4 years being treated at MDAnderson. She lived in The House for 4 years while he was treated. She gave up everything to be with him including a successful business and most of her friends and family back home. He’s now 18 and going into college and she now drives the bus for The House. She feels such a connection to the families here that she’s always willing to come in on her day off to help or cover shifts or whatever it takes to make the families’ lives just a little easier. Yet another inspirational story out of a sea of them.
So keep the positive vibes aimed at Houston (with a little left over for Richmond). We’re keeping up the good fight from our end.
Love to everyone,
Rog, Rach, & CJ
p.s. I'm using Facebook for photos and Caringbridge for updates (mostly). If you don't have Facebook and want to see pics, please have someone show you. I don't want to fool with photobucket or the others.
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.
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