It feels like a lifetime ago. On May 1, 2009, we were entering our third round of inpatient chemo. Life at that time revolved around the hospital. In fact, we felt like MCV had a literal revolving door between regular and unplanned admissions. This round started with an MRI...scheduled earlier than usual because Dr. Khan didn't really like what he had seen as a "shift" in the previous scan.
On May 1, we started to face the reality. That was when we realized that it might not work. The tumor was still growing. Despite the toxins pumping into her system. After that, everything snowballed and by the end of May, we were meeting a new team at MD Anderson.
Like I said...it feels like a lifetime ago.
Yesterday, my mom and I attended the annual memorial service for children who have passed away that were served by VCU Children's Medical Center. It was a very simple, lovely service of remembrance led by the team of Child Life specialists and chaplains at the hospital. The theme was kite flying and I was thrilled to learn that ASK chaplain Jim Bonomo's inspiration for the kite theme was Charlotte's memorial service. Another kudos to Mary Poppins! (Slight aside...I'm typing this at romp n' roll and Jolly Holiday is playing over the speakers during Open Gym.) Anyway, the event was another time to remember Charlotte. Some of the nurses and other specialists who had worked with us during our time at MCV were there and so was Miss Monica, the nutrition services staffer who frequently brought us meals on 7 East.
The memorial service aside, it's been another one of those emotionally charged weeks. There's all kinds of reasons. My emotions seem to wax and wane as it is. Couple that with the timing of my parents visiting from Florida...they haven't been here since Charlotte passed
...the oncoming media glare of Mother's Day (Yes, it's coming. Please stop reminding me, members of the mass market media.)
....and then just the activities of everyday life. I think of her every day. And I miss her.
BUT there is much to do and much to report.
First, I want to direct you to the RichmondMom website. The Super Mom contest is running again. Our good friend Megan Blake won last year with the support of many in our network. Then Roger won the Richmond Dad contest. This year, we have several friends who are nominated. Some of our favorites:
Sherry Klauer: Mom to Reese (and Rhett and Wade) and founder of ReeseStrong
Lisa Goodwin: Mom to Connor and founder of Connor's Heroes
Jennifer Morris: Mom to Rosie and Kellan, a constant cheerleader for all her kids endeavors and constantly positive through many challenges.
Voting ends April 30th. You can only vote once but please visit the website and make your choice. There are many other great moms nominated as well.
Other events coming soon:
The Chick-Fil-A Cow Drop is on May 8th. I will be at the Virginia Center Chick-Fil-A on Tuesday evening, 4/27, selling Cow Drop tickets for CJSTUF. Come on out for Kids Night (Kids Eat FREE!) and a mini concert from Silly Bus! The concert will be from about 6-7 PM. You can also buy your Cow Drop tickets at the Virginia Center Chick-Fil-A anytime before the Cow Drop on May 8th. CJSTUF gets $6 for every ticket bought!!!
The Mechanicsville Moms will hold a Used Book Sale at Romp n' Roll on May 6th from 3-7 PM benefitting CJSTUF. This is during Open Gym time so come on out and find some great books and videos. There will be media for all ages!
Be sure to check the website regularly for other fundraising updates and events.
For anyone wondering, the romp n' roll move to Mechanicsville is moving along well. Everything seems to be going according to schedule. We just started painting this week. Summer registration starts on Monday (there's my plug) and we are looking forward to the new space!
Have a good weekend, everyone. Might be a wet one if you're in VA. Hopefully the ASK 5K won't get too rained out.
Showing posts with label MCV. Show all posts
Showing posts with label MCV. Show all posts
Friday, April 23, 2010
Tuesday, March 30, 2010
There's No Such Thing As "Closure"
That word should be stricken from the Earth. I think people who throw around the term, "closure," should be forced to watch interpretive dance chronicling the Middle East peace process...in REAL TIME...while having to pee.
(Look at that, already digressing)
Warning, long rambling post ahead.
The Richmond Jazz Society answers the phone or greets audiences at official events buy saying, "Bright Moments" by request, and in memory of local jazz legend, Joe Kennedy, Jr. I've always liked that. It's a simple thing but it has helped center me every now and then.
I could certainly use some centering right now. The ups and downs and the swings from light to dark and back again are kind of getting old.
Rachel and I are still trying to juggle everything (CJSTUF, moving the business, wrestling with bills, the many other responsibilities and chores we have) while not killing each other, and the "CJ moments" keep happening. Pretty frequently these days. They aren't all bad, some are downright heartwarming. Like the child at Romp n' Roll yesterday who took a castanet, opened it up, and held it to her ear like a cell phone that flips out. Charlotte did that all the time very early on. It made me stop and do an inward, "Awwww." I even showed it to another child tonight.
But as I was driving home from a very long day of ups and downs, it really nailed me between the eyes that I will never hold her again. It was just a very sad thought as I headed north. It's nothing that debilitates me or makes me curl up into a fetal position (decidedly inconvenient when driving) but it still really, really sucks.
On top of that, we keep finding out about new members of "The MCV Vacation Club." They don't really have to be at MCV, just battling cancer.
Lots of musician friends are having biopsies or radiation or chemo or all of the above. One in particular is Judy Kushner, wife of Gantt Kushner, music engineer of the two Uptown Vocal Jazz Quartet CDs and Ginny's solo CD. A beautifully spiritual family. Judy just had surgery for brain cancer. From Gantt's reports, she's doing very well and has started PT and OT. Please feel free to contact them as they can use the support (moral and otherwise). He also has a FB site: http://www.facebook.com/gantt.kushner and his studio is called "Gizmo Studios"
There's also a little boy named Ricky who just moved onto the 7th floor and is now under the care of Dr. Tye. He's got TWO tumors working and they aren't the same kind (can't even fathom the odds of that happening). They came down from a homeless shelter up north and have very little. I haven't had the time to give them the attention they deserve but they at least are hooked up with the names of people and organizations that could help them. They all need your positive energy.
Thanks to ASK, Starlight, Reesestrong, Child Life, LINC and the other organizations helping them, and other children, out in one way or another.
Out of the blue today, a child at Romp n' Roll To Go said, "Mr. Roger, I'm sorry your son died." (a little confused, maybe, but very touching nonetheless). I think it kind of freaked out the staff person assisting me which I actually found slightly amusing.
There are some good things happening; part of the "swings to the light." The money keeps coming in for TEAM CJ. The Monument Ave. 10k has now brought in somewhere between $5,000 and $6,000 and still counting!
We didn't win the Spirit Group contest but we had a great time and those who won were very deserving:
This is froom an email from the Sportsbackers -
"According to the judges from Hirschler Fleicher:
First Place Winner - All Saints Catholic School
Second Place Winner - Martin Luther King, Jr. Middle School
Third Place Winner - Dance Masters Diva Dance Team"
NEXT TIME!!! Sat, April 2, 2011. SAVE THE DATE NOW!
Free Babies and Toddlers week at RnR is going gangbusters! It's been great seeing all the new (literally) faces. (still waiting till someone comes in looking for their free baby)
Chick-fil-a is holding their 3rd annual Cow Drop on May 8 at the Hanover County Airport. Tickets bought at the VA Center Marketplace CFA will benefit CJSTUF!
Guess this isn't as long as it could be. It's still rambling, though.
(Look at that, already digressing)
Warning, long rambling post ahead.
The Richmond Jazz Society answers the phone or greets audiences at official events buy saying, "Bright Moments" by request, and in memory of local jazz legend, Joe Kennedy, Jr. I've always liked that. It's a simple thing but it has helped center me every now and then.
I could certainly use some centering right now. The ups and downs and the swings from light to dark and back again are kind of getting old.
Rachel and I are still trying to juggle everything (CJSTUF, moving the business, wrestling with bills, the many other responsibilities and chores we have) while not killing each other, and the "CJ moments" keep happening. Pretty frequently these days. They aren't all bad, some are downright heartwarming. Like the child at Romp n' Roll yesterday who took a castanet, opened it up, and held it to her ear like a cell phone that flips out. Charlotte did that all the time very early on. It made me stop and do an inward, "Awwww." I even showed it to another child tonight.
But as I was driving home from a very long day of ups and downs, it really nailed me between the eyes that I will never hold her again. It was just a very sad thought as I headed north. It's nothing that debilitates me or makes me curl up into a fetal position (decidedly inconvenient when driving) but it still really, really sucks.
On top of that, we keep finding out about new members of "The MCV Vacation Club." They don't really have to be at MCV, just battling cancer.
Lots of musician friends are having biopsies or radiation or chemo or all of the above. One in particular is Judy Kushner, wife of Gantt Kushner, music engineer of the two Uptown Vocal Jazz Quartet CDs and Ginny's solo CD. A beautifully spiritual family. Judy just had surgery for brain cancer. From Gantt's reports, she's doing very well and has started PT and OT. Please feel free to contact them as they can use the support (moral and otherwise). He also has a FB site: http://www.facebook.com/gantt.kushner and his studio is called "Gizmo Studios"
There's also a little boy named Ricky who just moved onto the 7th floor and is now under the care of Dr. Tye. He's got TWO tumors working and they aren't the same kind (can't even fathom the odds of that happening). They came down from a homeless shelter up north and have very little. I haven't had the time to give them the attention they deserve but they at least are hooked up with the names of people and organizations that could help them. They all need your positive energy.
Thanks to ASK, Starlight, Reesestrong, Child Life, LINC and the other organizations helping them, and other children, out in one way or another.
Out of the blue today, a child at Romp n' Roll To Go said, "Mr. Roger, I'm sorry your son died." (a little confused, maybe, but very touching nonetheless). I think it kind of freaked out the staff person assisting me which I actually found slightly amusing.
There are some good things happening; part of the "swings to the light." The money keeps coming in for TEAM CJ. The Monument Ave. 10k has now brought in somewhere between $5,000 and $6,000 and still counting!
We didn't win the Spirit Group contest but we had a great time and those who won were very deserving:
This is froom an email from the Sportsbackers -
"According to the judges from Hirschler Fleicher:
First Place Winner - All Saints Catholic School
Second Place Winner - Martin Luther King, Jr. Middle School
Third Place Winner - Dance Masters Diva Dance Team"
NEXT TIME!!! Sat, April 2, 2011. SAVE THE DATE NOW!
Free Babies and Toddlers week at RnR is going gangbusters! It's been great seeing all the new (literally) faces. (still waiting till someone comes in looking for their free baby)
Chick-fil-a is holding their 3rd annual Cow Drop on May 8 at the Hanover County Airport. Tickets bought at the VA Center Marketplace CFA will benefit CJSTUF!
Guess this isn't as long as it could be. It's still rambling, though.
Saturday, January 23, 2010
Clarifications, Expositions, and Compositions
First off, I guess I need to clarify a few things. More than one person was a little confused about my Facebook post concerning January 22, 2009. That was the date of Charlotte's first surgery to debulk the tumor in her brain. 6:30am was about when they started getting her ready.
Aunt B mentioned CJ doing her princess wave as we walked by the 7th floor lounge at MCV. I had almost forgotten that. I was so freaked out inside that my head was feeling fuzzy (the way it does when I REALLY get upset). I remember feeling that I needed to keep it together as we walked down the hall to the elevators. I'd seen this scene before in countless movies and TV documentaries wondering which way the dramatic shoe was going to fall at the end. (Does my life completely revolve around mass media!?) The real terror is light years worse in person, believe me.
Down in the pre-op area was where Mommy sang Frosty to her just before they wheeled her into surgery.
I remember shaking inside. Not shivering like being cold but more like a constant vibrating; like there was a humming going on inside me. Weird, I know.
I also remember feeling so completely helpless.
So that's what Jan 22, 2009 was all about.
On to other things...It's great to commemorate, bad to dwell.
Here's my Facebook post from 4:00-something this morning:
"Yesterday was halfway decent, considering... Spiritually, musically, financially, geographically, gastronomically... I'll do a full blog post later today but I just got back form Shepherdstown, WV and I need sleep." Can't believe I could even type at that point.
To expand...
Spiritually - I was ready to be very mopey, grumpy, and unhappy all day yesterday. Just didn't happen. I thought about Charlotte all day and had a "moment" on the road just south of Shepherdstown, WV but for the most part, I was moderately cool.
Musically - Uptown had a workshop/gig at Shepherd University yesterday which went VERY well. The workshop was supposed to be aimed at the vocal students. They don't have a jazz vocal group yet but seem very ready to jump in and try. Ginny and I were going to split the time with me giving some fundamental, before-you-form-the group homework and Ginny guiding the group singing portion. We were also asked to touch on the career aspect of music, being honest but not terrifying the students! :-)
Well, of course, I kind of got on a roll talking shop and hogged most of the time. We did the other stuff but it was more like 80% Rog and 20% everything else but the students were responding and we were learning stuff. Some were even TAKING NOTES!!! Uh-oh...
Funny side note: I also spread the Pomplamoose word. I was doing the shortest possible bit on improv and mentioned that the easiest way to start getting licks under the belt was to sing tunes they already know with just syllables. I started with quick examples like the ABC song, Happy Birthday, etc... Then I started "scatting" "All The Single Ladies" which really seemed to amuse them. Then I digressed, as I usually do, and told them about Pomplamoose's version. (Jack and Nataly, I'll expect a check (or maybe just a bar of soap) within the week.)
The evening concert went very well and we got a standing "O!" There was also good, moderately healthy food in the dressing room including a bag of Gala apples! Yum! (That's the "gastronomic" part)
Because of circumstances I'll go into later, I drove myself up to the gig. I ended up taking Highway 340 into Shephardtown which unexpectedly found me in Harpers Ferry. I was inspired and pulled up "Tom Burleigh's Dead" by Eddie From Ohio. I think I listened to it 4 times in a row. Perfect! Here: You should too! :-) OK So it's only a snippet - Go buy it for Pete's sake!
By the way...what a GORGEOUS area of our country!
To close out the musical portion of this epic, here is a message I got from Julia Dollison. Though you'd might like to see it.
"Thinking of you lots today...
Kerry and I just finished tracking a cappella vocals for his transcription of Keith Jarrett's live (improvised) solo piano recording of "Radiance 8" (commissioned by Long Beach Poly). I added lyrics to it this past fall, but now that we're finally laying it down, it occurs to me that they're really about CJ.
As much as I wanted to post this on your wall, I didn't want to take up that much space, but you're welcome to share it if you wish. We'll send you our recording as soon as we mix it down... :)
xo,
JD
(Roger's note: Kerry and Julia are mutants! In a good, musical way, of course)
**
Sometimes in her sleep, she smiles.
Is she dreaming? is she far away?
Sometimes in her sleep, she laughs.
Is she happy? does she wish she could stay?
Sometimes in her sleep, she cries,
and you hold her and pray.
Morning comes, and she'll forget -
Things we dream about never make much sense.
Then the sun shines in, so bright,
just like her radiance.
All these moments fly by so quickly,
but she never seems to mind -
as long as you're by her side.
Sometimes in her sleep,
She awakens to find you were there all the while.
With a smile, she returns to her dreams."
Beautiful. I'll leave you with that for now. More later.
Aunt B mentioned CJ doing her princess wave as we walked by the 7th floor lounge at MCV. I had almost forgotten that. I was so freaked out inside that my head was feeling fuzzy (the way it does when I REALLY get upset). I remember feeling that I needed to keep it together as we walked down the hall to the elevators. I'd seen this scene before in countless movies and TV documentaries wondering which way the dramatic shoe was going to fall at the end. (Does my life completely revolve around mass media!?) The real terror is light years worse in person, believe me.
Down in the pre-op area was where Mommy sang Frosty to her just before they wheeled her into surgery.
I remember shaking inside. Not shivering like being cold but more like a constant vibrating; like there was a humming going on inside me. Weird, I know.
I also remember feeling so completely helpless.
So that's what Jan 22, 2009 was all about.
On to other things...It's great to commemorate, bad to dwell.
Here's my Facebook post from 4:00-something this morning:
"Yesterday was halfway decent, considering... Spiritually, musically, financially, geographically, gastronomically... I'll do a full blog post later today but I just got back form Shepherdstown, WV and I need sleep." Can't believe I could even type at that point.
To expand...
Spiritually - I was ready to be very mopey, grumpy, and unhappy all day yesterday. Just didn't happen. I thought about Charlotte all day and had a "moment" on the road just south of Shepherdstown, WV but for the most part, I was moderately cool.
Musically - Uptown had a workshop/gig at Shepherd University yesterday which went VERY well. The workshop was supposed to be aimed at the vocal students. They don't have a jazz vocal group yet but seem very ready to jump in and try. Ginny and I were going to split the time with me giving some fundamental, before-you-form-the group homework and Ginny guiding the group singing portion. We were also asked to touch on the career aspect of music, being honest but not terrifying the students! :-)
Well, of course, I kind of got on a roll talking shop and hogged most of the time. We did the other stuff but it was more like 80% Rog and 20% everything else but the students were responding and we were learning stuff. Some were even TAKING NOTES!!! Uh-oh...
Funny side note: I also spread the Pomplamoose word. I was doing the shortest possible bit on improv and mentioned that the easiest way to start getting licks under the belt was to sing tunes they already know with just syllables. I started with quick examples like the ABC song, Happy Birthday, etc... Then I started "scatting" "All The Single Ladies" which really seemed to amuse them. Then I digressed, as I usually do, and told them about Pomplamoose's version. (Jack and Nataly, I'll expect a check (or maybe just a bar of soap) within the week.)
The evening concert went very well and we got a standing "O!" There was also good, moderately healthy food in the dressing room including a bag of Gala apples! Yum! (That's the "gastronomic" part)
Because of circumstances I'll go into later, I drove myself up to the gig. I ended up taking Highway 340 into Shephardtown which unexpectedly found me in Harpers Ferry. I was inspired and pulled up "Tom Burleigh's Dead" by Eddie From Ohio. I think I listened to it 4 times in a row. Perfect! Here: You should too! :-) OK So it's only a snippet - Go buy it for Pete's sake!
By the way...what a GORGEOUS area of our country!
To close out the musical portion of this epic, here is a message I got from Julia Dollison. Though you'd might like to see it.
"Thinking of you lots today...
Kerry and I just finished tracking a cappella vocals for his transcription of Keith Jarrett's live (improvised) solo piano recording of "Radiance 8" (commissioned by Long Beach Poly). I added lyrics to it this past fall, but now that we're finally laying it down, it occurs to me that they're really about CJ.
As much as I wanted to post this on your wall, I didn't want to take up that much space, but you're welcome to share it if you wish. We'll send you our recording as soon as we mix it down... :)
xo,
JD
(Roger's note: Kerry and Julia are mutants! In a good, musical way, of course)
**
Sometimes in her sleep, she smiles.
Is she dreaming? is she far away?
Sometimes in her sleep, she laughs.
Is she happy? does she wish she could stay?
Sometimes in her sleep, she cries,
and you hold her and pray.
Morning comes, and she'll forget -
Things we dream about never make much sense.
Then the sun shines in, so bright,
just like her radiance.
All these moments fly by so quickly,
but she never seems to mind -
as long as you're by her side.
Sometimes in her sleep,
She awakens to find you were there all the while.
With a smile, she returns to her dreams."
Beautiful. I'll leave you with that for now. More later.
Thursday, January 14, 2010
FAQ about donations:
Thank you to everyone who has inquired about donations to CJSTUF and other donations in Charlotte's honor. There have been a number of questions so I am going to address them here:
1. To Whom Should I make a donation in Charlotte's honor?
There are a number of worthy causes that have benefitted us this year. Besides CJSTUF, donations can be made to Make-A-Wish Foundation, ASK Clinic at MCV, or Noah's Children. Other worthy causes not mentioned in the obituary include ReeseStrong, Connor's Heroes, Ronald McDonald House, and Caring Bridge.
2. How can I make a donation to CJSTUF (or any of these other organizations)?
You can bring your donation to the memorial service on Saturday. There will be a lockbox at the service and reception with the logos of all the organizations that have benefitted us (as well as CJSTUF). Donations can be accepted there. All cash donations will go to CJSTUF unless otherwise specified.
A donation link will be set up on the website soon (we are working on this). This will allow for online donations via PayPal. Other donations to CJSTUF can be sent to our home address: 9 Slash Ct, Ashland, VA 23005. Checks should be made out to Charlotte or to CJSTUF.
3. Are donations to CJSTUF tax-deductible?
While we are an officially incorporated organization, we do not yet have 501(c)3 status. Donations are NOT currently tax deductible; however, our board is pursuing tax-exempt status and we expect to have this before the end of 2010. We will definitely make sure everyone knows when we have tax-exempt status.
4. I work for a company or volunteer for an organization that raises money and/or matches funds for other organizations. We would like to help CJSTUF. How do we go about this?
We would love to work with you and your company/organziation. Most companies or other organizations require that a benefitting organization be tax-exempt or have tax-exempt status in order to qualify. CJSTUF is not going anywhere and we would be happy to work with you once we reach tax-exempt status! Just keep your eyes and ears open.
Thank you, again, for the momentum and energy and giving spirit that has been put forth in Charlotte's name. We are humbled and appreciative!
Rachel and Roger
Thursday, September 3, 2009
Fighting a cold
There really isn't much to report but I'm so addicted to this Caring Bridge site that I have to write something before I go to bed...The biggest news is that now I'm fighting some kind of cold/bug. I don't think it's very bad and I'm (hopefully) coming off the worst of it already but last night I was achy with a sore throat. At least no fever. I didn't sleep very well but Roger was very nice to me and went in to teach camp (I was supposed to be on morning shift). This allowed me to sleep and convalesce a bit, especially since Charlotte slept till after 10 (!!!).We went down to Romp n' Roll at about noon and took Roger over to Chick-Fil-A for lunch. Charlotte has become quite the "regular" around there and they hadn't seen her for a while so Tim (one of the manager/franchise trainees) and Linda (another adoring fan) took extra good care of us today. Then we did the trade-off and I went to work while Roger took Charlotte down to MCV to visit our employee Lindsey.I don't think we have had the time to update everyone on Lindsey. She is a Patrick Henry high school senior who has been working for us at Romp n' Roll since the beginning of the summer. Anyway, she's having a rough week (to say the least). Her dad was in a bike accident on Friday and then SHE was in a car accident on Monday and has a crushed hand that will require multiple surgeries. Otherwise she seems to be ok but Roger has been able to go by and visit her twice now and today she and Charlotte brought a movie that they watched together. Please add Lindsey and her family to your prayer list!! While at MCV, Roger did some "nosing around" just to see if there was any progress. The only news is that Dr. Tye also saw the scans and agreed with Dr. Khan with what they saw on the MRI. The ball is in motion to get the July scans from MDA. That's all we know.From MCV, Roger took Charlotte over to RMC where they met the Yellow Jacket Field Hockey Team that has recently adopted CJ as part of the Friends of Jaclyn Foundation. They had dinner with the team at Estes Dining Hall and Charlotte really seemed to bond with some of the girls. It will be fun to have her involved in their games. They were all wearing Charlotte bracelets and gave her lots of positive attention. Thanks to all of you for your thoughts, concerns, and messages in the past 24 hours. Roger and I are dealing with the ambiguity as best we can right now and doing as best we can to keep our spirits up. It's a very bizarre time for me right now emotionally and I can't really describe it. So I won't even try. Lots of thoughts in my head. Some good. Some not so good. Just be patient with us if we seem distracted or not really in the mood to talk about it. I guess that's mostly where we are.Signing off so I can get some sleep...Rachel
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
Sunday, July 19, 2009
A Journal Post from Rachel
So I realized that I hadn't done a journal post in quite a while, so here it is...
Life without hubby and daughter is surreal, kinda lonely and VERY quiet. I'm definitely busy with work so when I come home I pretty much just veg out in front of the TV or on Facebook or something brainless like that.
It's funny how much longer it takes the dishwasher or laundry basket to fill up and it's SO much easier to keep the house clean (especially when nobody is living in it). It helps that my parents and Kolbey did a major house cleaning while we were in TX so I came back to a sparkling pad (thanks).
I have really appreciated all of the kind words and support that have come to me through emails, facebook updates, folks stopping in at romp n' roll, etc. I've had invites out and meals cooked for me (thanks, Beth!) and I am really feeling nurtured and supported. That is great. I think I am also (finally) accepting the fact that it is OK for me to take some time to do NOTHING on occasion. That's not a natural way for me to live my life but constant stress will help you realize how important a break from work and daily activities can be. I'm learning how to "treat" myself and put myself first every once in a while. As any mom can tell you, that's not an easy thing to do.
Yes, I'm still sad. The news of the week was definitely not a morale booster. This cancer keeps hanging heavily over our heads and our hearts and it still makes my heart (and body) ache. I am convinced that we are in the right place and I think of all of the fortuitous events that got us here:
If Charlotte had been older, we would have started radiation immediately (rather than waiting and starting chemo first). If that were the case, we would most certainly have stayed at MCV and probably would never have explored the option of proton beam radiation. It probably wouldn't have even hopped up on our radar (yes, pun intended!). By going the chemo route first, we have been able to see how aggressive and mean this tumor is but it has enabled us to connect with the amazing doctors at MD Anderson. I am grateful to Dr. Khan for his knowledge, experience, and connections to such a fabulous facility. I don't think we would be in Texas right now if it weren't for him. Also, while it's hard to be away from each other right now, I think Roger and I have now developed a better rhythm in terms of how we are dealing and coping with this event on our lives and that makes the separation a little easier right now (as opposed to six months ago). Yes. Tomorrow will be SIX MONTHS since her diagnosis. We have reached the half year mark.
I just want to segue for a moment and brag about my husband. Yes, he is a GREAT DAD. You all know that and helped to get him the recognition he so deserves. He is also my partner, my teammate. We've been married for almost 12 years and we've been together for almost 15 years. That's a long time. We don't always agree and we frequently drive each other crazy but I could never imagine my life without him and we wouldn't be dealing with all of this as well as we are without that strong bond. I just wanted to take a moment to get "mushy" (as Roger would say) and acknowledge what a great person he is and what a great team we are.
Ok, collective: AWWWWWWWW....
I must switch gears, close up shop, and get ready to go to work. My next "day off" from romp n' roll will be in a week. When I will be in Texas. Crazy life we lead....
Rachel
Life without hubby and daughter is surreal, kinda lonely and VERY quiet. I'm definitely busy with work so when I come home I pretty much just veg out in front of the TV or on Facebook or something brainless like that.
It's funny how much longer it takes the dishwasher or laundry basket to fill up and it's SO much easier to keep the house clean (especially when nobody is living in it). It helps that my parents and Kolbey did a major house cleaning while we were in TX so I came back to a sparkling pad (thanks).
I have really appreciated all of the kind words and support that have come to me through emails, facebook updates, folks stopping in at romp n' roll, etc. I've had invites out and meals cooked for me (thanks, Beth!) and I am really feeling nurtured and supported. That is great. I think I am also (finally) accepting the fact that it is OK for me to take some time to do NOTHING on occasion. That's not a natural way for me to live my life but constant stress will help you realize how important a break from work and daily activities can be. I'm learning how to "treat" myself and put myself first every once in a while. As any mom can tell you, that's not an easy thing to do.
Yes, I'm still sad. The news of the week was definitely not a morale booster. This cancer keeps hanging heavily over our heads and our hearts and it still makes my heart (and body) ache. I am convinced that we are in the right place and I think of all of the fortuitous events that got us here:
If Charlotte had been older, we would have started radiation immediately (rather than waiting and starting chemo first). If that were the case, we would most certainly have stayed at MCV and probably would never have explored the option of proton beam radiation. It probably wouldn't have even hopped up on our radar (yes, pun intended!). By going the chemo route first, we have been able to see how aggressive and mean this tumor is but it has enabled us to connect with the amazing doctors at MD Anderson. I am grateful to Dr. Khan for his knowledge, experience, and connections to such a fabulous facility. I don't think we would be in Texas right now if it weren't for him. Also, while it's hard to be away from each other right now, I think Roger and I have now developed a better rhythm in terms of how we are dealing and coping with this event on our lives and that makes the separation a little easier right now (as opposed to six months ago). Yes. Tomorrow will be SIX MONTHS since her diagnosis. We have reached the half year mark.
I just want to segue for a moment and brag about my husband. Yes, he is a GREAT DAD. You all know that and helped to get him the recognition he so deserves. He is also my partner, my teammate. We've been married for almost 12 years and we've been together for almost 15 years. That's a long time. We don't always agree and we frequently drive each other crazy but I could never imagine my life without him and we wouldn't be dealing with all of this as well as we are without that strong bond. I just wanted to take a moment to get "mushy" (as Roger would say) and acknowledge what a great person he is and what a great team we are.
Ok, collective: AWWWWWWWW....
I must switch gears, close up shop, and get ready to go to work. My next "day off" from romp n' roll will be in a week. When I will be in Texas. Crazy life we lead....
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.
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, July 7, 2009
A Whirlwind of Developments
Hi everyone,
This has been quite the week and it's not even close to being over! Today was a whirlwind of developments. We simply got too antsy waiting for the folks at MCV to get us details about out treatment at MD Anderson so we started making our own phone calls and waddya know?!?! We got stuff done! We got our flights for Saturday, rides from the airport, a place to stay (at least for the weekend), a social worker at MD Anderson (who is amazing!), an appointment at the Proton Center, our "My MD Anderson" account set up, and a thin mint! I got the thin mint. Rachel did everything else. We still have some details to iron out including our long-term housing arrangements but it's definitely steps in the right direction.
Charlotte had a very good day except for when she fell on her butt coming in the door (no damage but lots of drama) and when Wyatt turned off the TV because he wanted CJ to play with him and she had a melt down.
Rachel took Charlotte to the clinic this morning and I got to do stuff at home and go running.
Charlotte had a good potty day as well! She told mommy her bottom hurt and Rachel took her to the bathroom and low and behold!!! She did both (pee and poop)! We are trying (slowly) to get her back into that idea of using the potty. Some new tinkerbell panties from Aunt B might just help things along. We don't want to rush things but...it's time.
While I was working at Romp n' Roll tonight, the rest of the family went over to Wyatt's for dinner (where the TV meltdown took place). It was a lovely evening, eating dinner outdoors in the "country" while the kids played.
Big events coming in the next few days. We'd love to see folks at the concert on Thursday in the Chick-Fil-A parking lot (5:30-7:30). Then Friday will be her party at 6 PM at Romp n' Roll. We have said no presents...AND WE MEAN IT!! She has more than enough toys and clothes. We just want to heap on the love! A HUGE thanks to Jeni Mauney (a Romp n' Roll mom and good friend) for making a cake for the party as well as to Roger's Aunt Lynn and the NM/CO crew for ordering her DQ ice cream cakes. We will have PLENTY of cake for everyone. Don't forget to wear your pink and/or purple in honor of the princess.
One final note I will leave you with: the other night as I was flushing Charlotte's lines and putting her to bed, she said, "Mom, you and Dad take really good care of me." Sniff, sniff, AWWWWW! That was definitely a sweet moment! Nice to hear her say that. I can't believe she will be four. What a journey this has been. I still remember that little 6 lb, 12 oz rocket baby that showed her stubborn strength from the very beginning. She has always been a fighter and we will continue to fight. She was born strong for a reason.
Ok, I'm done...
Rachel & Roger
This has been quite the week and it's not even close to being over! Today was a whirlwind of developments. We simply got too antsy waiting for the folks at MCV to get us details about out treatment at MD Anderson so we started making our own phone calls and waddya know?!?! We got stuff done! We got our flights for Saturday, rides from the airport, a place to stay (at least for the weekend), a social worker at MD Anderson (who is amazing!), an appointment at the Proton Center, our "My MD Anderson" account set up, and a thin mint! I got the thin mint. Rachel did everything else. We still have some details to iron out including our long-term housing arrangements but it's definitely steps in the right direction.
Charlotte had a very good day except for when she fell on her butt coming in the door (no damage but lots of drama) and when Wyatt turned off the TV because he wanted CJ to play with him and she had a melt down.
Rachel took Charlotte to the clinic this morning and I got to do stuff at home and go running.
Charlotte had a good potty day as well! She told mommy her bottom hurt and Rachel took her to the bathroom and low and behold!!! She did both (pee and poop)! We are trying (slowly) to get her back into that idea of using the potty. Some new tinkerbell panties from Aunt B might just help things along. We don't want to rush things but...it's time.
While I was working at Romp n' Roll tonight, the rest of the family went over to Wyatt's for dinner (where the TV meltdown took place). It was a lovely evening, eating dinner outdoors in the "country" while the kids played.
Big events coming in the next few days. We'd love to see folks at the concert on Thursday in the Chick-Fil-A parking lot (5:30-7:30). Then Friday will be her party at 6 PM at Romp n' Roll. We have said no presents...AND WE MEAN IT!! She has more than enough toys and clothes. We just want to heap on the love! A HUGE thanks to Jeni Mauney (a Romp n' Roll mom and good friend) for making a cake for the party as well as to Roger's Aunt Lynn and the NM/CO crew for ordering her DQ ice cream cakes. We will have PLENTY of cake for everyone. Don't forget to wear your pink and/or purple in honor of the princess.
One final note I will leave you with: the other night as I was flushing Charlotte's lines and putting her to bed, she said, "Mom, you and Dad take really good care of me." Sniff, sniff, AWWWWW! That was definitely a sweet moment! Nice to hear her say that. I can't believe she will be four. What a journey this has been. I still remember that little 6 lb, 12 oz rocket baby that showed her stubborn strength from the very beginning. She has always been a fighter and we will continue to fight. She was born strong for a reason.
Ok, I'm done...
Rachel & Roger
Wednesday, June 24, 2009
Charlotte made her "Wish"
The last couple of days in the Nelson Clinic have been much smoother. We've been calling in ahead to give them "warning." Dr. Kahn wasn't there today so we didn't get to ask our latest questions but nurse April promised to corner him this afternoon and make sure he addresses them.
Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.
Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.
There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."
Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.
Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.
Make-a-Wish is coming by soon so we'll be one step closer to that.
Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)
Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.
The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.
The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.
Update:
So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.
In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.
Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.
Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?
Remember: two upcoming events for her birthday
1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.
That's all I have to report for now. Some very good news.
Rachel
Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.
Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.
There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."
Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.
Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.
Make-a-Wish is coming by soon so we'll be one step closer to that.
Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)
Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.
The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.
The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.
Update:
So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.
In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.
Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.
Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?
Remember: two upcoming events for her birthday
1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.
That's all I have to report for now. Some very good news.
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 11, 2009
Every Day is a Bonus
We keep having big days but I guess they can't help but be big when every day is a bonus.
Yesterday morning as I was getting Charlotte ready for our day, I noticed something odd on her belly and found it was a tick! Rachel and I tried to get it out but it was embedded pretty deep so we resolved to get professional help.
So we went to the vet! I mean, who is better at dealing with ticks than a vet?
Well I actually had a breakfast meeting with Cate Newbanks from FACES of Virginia at the diner formerly known as Pete's and CJ tagged along. The tick wasn't going anywhere, the vet is literally right around the corner, and she wasn't showing any symptoms of anything, so we had a very nice breakfast. Charlotte had pancakes (surprize!)
We went to the vet right after breakfast and although they were sympathetic, they weren't comfortable working on a human. The chemicals they use on animals aren't appropriate for children.
So I called the pediatrician and they fit us in as soon as I got there. They weren't incredibly busy right at that moment so it was convenient for everyone. We saw Dr. Map (not kidding). I don't think I had ever met him before. Charlotte wasn't very interested in cooperating with anyone who had a stethoscope around their neck so I had to pick her up while Dr. Map worked on the tick.
It took a moderately long time and CJ was quite the champ despite her anxiety. We counted to 20, sang the ABC song, and spelled her name. I could tell it hurt a little as she counted/sang/spelled through gritted teeth but she didn't stop. I was very proud of her.
We didn't quite get through "Reynolds" when he announced success. He got the head, hooks, sucker and everything.
For the record, Dr. Map recommended Vaseline or nail polish to get the bad boy out. Unfortunately, we had probably killed it with our attention so it wouldn't have worked for us. It's a very bad year for ticks already so everyone check each other thoroughly after being outdoors. (I have the image of monkeys grooming each other in my head.)
So after that, we ended up at Romp n' Roll to bring lunch to Mommy who had taught the morning preview classes.
That, by the way, has been a tremendous success attendance-wise. Very exciting.
I left CJ at RNR with Rachel and came home to do some work. Aunt Phyllis came in from Florida (Rachel and CJ went to pick her up at the airport) so we have our latest in-house support person. She wasn't here an hour before the reorganizing glint came into her eye. She'S REALLY good at that sort of thing.
Then I headed back to RNR to teach my evening previews. The posters for the concert series came in and man! do they look great!
Today is another big day with a meeting with Drs. Kahn and Chung at MCV to discuss latest protocol options (we had a deep, emotional discussion about that last night), Camp, and the 1st Concert Series concert (which might be moved indoors due to weather. Either way, it'll be a hoot with Clay Mottley and the Taters!)
Rachel and I will be first in line at the blood mobile which opens at 3pm.
As always, we'll update everyone as to what we decide for our next step. Our positive energy need level is back up orange. That indicates a higher level of need for thoughts, energy, prayers, meditations, visualizations, puppies, kittens, balloons, chocolate, ice cream, chocolate ice cream, etc...in other words, we're feeling kind of down right now.
Not necessarily important to tell us. Just do it. Please.
One thing CJ is not lacking is cuter-than-all-getout clothes. They just keep appearing. And we keep putting her in them. She keeps being cute.
While I mentioned the amazing things going on throughout the CB community, there are still many sorrows being handed out. Please keep those in your thoughts too.
Thanks,
Rog
p.s. For those not connected to us via Facebook, there are several with which we are associated. Rachel and I both have our own, there's Get Well Charlotte, and Romp n' Roll at VA Center. The last two you need to "become a fan" to join. Just in case you didn't already have information overload.
Update:
Rompy's Concert Series is currently rockin'! The Taters and Clay Mottley are jamming inside romp n' roll. There was a threat of some summer storms so we moved the concerts inside "just in case". Sun is shining all the same but no matter. We've had a great crowd and lots of fun!!!
In addition, over 25 people have given blood at the bloodmobile today (include Annette, Michael, Babz, and myself). Roger tried to give but his blood kept clotting up...oh well. Final count on the blood drive is 25 came in, 19 gave and 2 of the 19 gave a "double dose" through a special system where they can get double the usable blood without completely disarming the donor.
Thanks again to everyone for coming out for the fun!
So, I'm sure everyone is chomping at the bit to find out the "news". Well....let's just start by saying it was one of the more frustrating trips to the hospital. We were told there was an appointment at 12 PM with Dr. Khan and Dr. Chung but we were supposed to meet up on the 6th floor (neurosurgery). We did as we were told and finally about 1 PM met with a DIFFERENT doctor who didn't really know why we were here.
FINALLY, Dr. Chung arrived but while he claimed to have been following Charlotte's case and be "in the loop" about things, he didn't seem to be able to tell us much about what we would do for Charlotte's specific situation. We asked him about proton beam radiation options and again he was pretty nondescript and didn't seem to have an opinion or much information. Basically I got a "Radiation 101" tutorial but nothing specific with a timeline or other information regarding Charlotte's treatment plan.
Finally, I was pretty abrupt and asked some pointed questions about 1) Where Dr. Khan was in all of this and 2) Why we weren't getting any answers when we had felt this HUGE sense of urgency since the news of tumor regrowth for us to get things DONE. In short, he couldn't really help us and he tried to page Dr. Khan. After about 2:30 (yes, we had been there since NOON), we settled on going down to the clinic to search out Dr. Khan and see if we could reschedule and/or find some answers.
Once we got down to the clinic, I explained why we were there and they got Dr. Khan for us. Apparently there was a wonderful series of miscommunications. Dr. Khan wasn't planning to come to the meeting while we were expecting him and (blah blah blah). I expressed my concerns and he was very understanding. Here is what I HAVE learned:
1. Dr. Khan just received the new protocol from Dr. Wolff at MD Anderson. They have some new ideas and information which he will share thoroughly with us once he reviews it and gets some clarification/follow up questions answered (hopefully by Monday).
2. Charlotte will have a spinal tap sometime next week (probably) to insure that there is no tumor cells in the spinal fluid. She will also probably start some oral chemotherapy next week (based on the protocol).
3. Based on this plan, it looks like MD Anderson is recommending localized radiation which Dr. Khan is thinking towards proton beam radiation, mainly because it offers the best chance at minimizing harmful effects of radiation while allowing higher doses of radiation to be used on the tumor. Of course, now we are going to have to figure out WHERE we will get the radiation done because it is only at certain places in the country. MD Anderson is one option but we know that they are out of network for our insurance. We might be able to find an "in-network" option.
So that's where we are. We don't have a lot more answers and it was a rather frustrating day but at least it's a tiny step in the right direction.
I gotta go clean up the gym and head home so I"ll sign off...
Rachel
Yesterday morning as I was getting Charlotte ready for our day, I noticed something odd on her belly and found it was a tick! Rachel and I tried to get it out but it was embedded pretty deep so we resolved to get professional help.
So we went to the vet! I mean, who is better at dealing with ticks than a vet?
Well I actually had a breakfast meeting with Cate Newbanks from FACES of Virginia at the diner formerly known as Pete's and CJ tagged along. The tick wasn't going anywhere, the vet is literally right around the corner, and she wasn't showing any symptoms of anything, so we had a very nice breakfast. Charlotte had pancakes (surprize!)
We went to the vet right after breakfast and although they were sympathetic, they weren't comfortable working on a human. The chemicals they use on animals aren't appropriate for children.
So I called the pediatrician and they fit us in as soon as I got there. They weren't incredibly busy right at that moment so it was convenient for everyone. We saw Dr. Map (not kidding). I don't think I had ever met him before. Charlotte wasn't very interested in cooperating with anyone who had a stethoscope around their neck so I had to pick her up while Dr. Map worked on the tick.
It took a moderately long time and CJ was quite the champ despite her anxiety. We counted to 20, sang the ABC song, and spelled her name. I could tell it hurt a little as she counted/sang/spelled through gritted teeth but she didn't stop. I was very proud of her.
We didn't quite get through "Reynolds" when he announced success. He got the head, hooks, sucker and everything.
For the record, Dr. Map recommended Vaseline or nail polish to get the bad boy out. Unfortunately, we had probably killed it with our attention so it wouldn't have worked for us. It's a very bad year for ticks already so everyone check each other thoroughly after being outdoors. (I have the image of monkeys grooming each other in my head.)
So after that, we ended up at Romp n' Roll to bring lunch to Mommy who had taught the morning preview classes.
That, by the way, has been a tremendous success attendance-wise. Very exciting.
I left CJ at RNR with Rachel and came home to do some work. Aunt Phyllis came in from Florida (Rachel and CJ went to pick her up at the airport) so we have our latest in-house support person. She wasn't here an hour before the reorganizing glint came into her eye. She'S REALLY good at that sort of thing.
Then I headed back to RNR to teach my evening previews. The posters for the concert series came in and man! do they look great!
Today is another big day with a meeting with Drs. Kahn and Chung at MCV to discuss latest protocol options (we had a deep, emotional discussion about that last night), Camp, and the 1st Concert Series concert (which might be moved indoors due to weather. Either way, it'll be a hoot with Clay Mottley and the Taters!)
Rachel and I will be first in line at the blood mobile which opens at 3pm.
As always, we'll update everyone as to what we decide for our next step. Our positive energy need level is back up orange. That indicates a higher level of need for thoughts, energy, prayers, meditations, visualizations, puppies, kittens, balloons, chocolate, ice cream, chocolate ice cream, etc...in other words, we're feeling kind of down right now.
Not necessarily important to tell us. Just do it. Please.
One thing CJ is not lacking is cuter-than-all-getout clothes. They just keep appearing. And we keep putting her in them. She keeps being cute.
While I mentioned the amazing things going on throughout the CB community, there are still many sorrows being handed out. Please keep those in your thoughts too.
Thanks,
Rog
p.s. For those not connected to us via Facebook, there are several with which we are associated. Rachel and I both have our own, there's Get Well Charlotte, and Romp n' Roll at VA Center. The last two you need to "become a fan" to join. Just in case you didn't already have information overload.
Update:
Rompy's Concert Series is currently rockin'! The Taters and Clay Mottley are jamming inside romp n' roll. There was a threat of some summer storms so we moved the concerts inside "just in case". Sun is shining all the same but no matter. We've had a great crowd and lots of fun!!!
In addition, over 25 people have given blood at the bloodmobile today (include Annette, Michael, Babz, and myself). Roger tried to give but his blood kept clotting up...oh well. Final count on the blood drive is 25 came in, 19 gave and 2 of the 19 gave a "double dose" through a special system where they can get double the usable blood without completely disarming the donor.
Thanks again to everyone for coming out for the fun!
So, I'm sure everyone is chomping at the bit to find out the "news". Well....let's just start by saying it was one of the more frustrating trips to the hospital. We were told there was an appointment at 12 PM with Dr. Khan and Dr. Chung but we were supposed to meet up on the 6th floor (neurosurgery). We did as we were told and finally about 1 PM met with a DIFFERENT doctor who didn't really know why we were here.
FINALLY, Dr. Chung arrived but while he claimed to have been following Charlotte's case and be "in the loop" about things, he didn't seem to be able to tell us much about what we would do for Charlotte's specific situation. We asked him about proton beam radiation options and again he was pretty nondescript and didn't seem to have an opinion or much information. Basically I got a "Radiation 101" tutorial but nothing specific with a timeline or other information regarding Charlotte's treatment plan.
Finally, I was pretty abrupt and asked some pointed questions about 1) Where Dr. Khan was in all of this and 2) Why we weren't getting any answers when we had felt this HUGE sense of urgency since the news of tumor regrowth for us to get things DONE. In short, he couldn't really help us and he tried to page Dr. Khan. After about 2:30 (yes, we had been there since NOON), we settled on going down to the clinic to search out Dr. Khan and see if we could reschedule and/or find some answers.
Once we got down to the clinic, I explained why we were there and they got Dr. Khan for us. Apparently there was a wonderful series of miscommunications. Dr. Khan wasn't planning to come to the meeting while we were expecting him and (blah blah blah). I expressed my concerns and he was very understanding. Here is what I HAVE learned:
1. Dr. Khan just received the new protocol from Dr. Wolff at MD Anderson. They have some new ideas and information which he will share thoroughly with us once he reviews it and gets some clarification/follow up questions answered (hopefully by Monday).
2. Charlotte will have a spinal tap sometime next week (probably) to insure that there is no tumor cells in the spinal fluid. She will also probably start some oral chemotherapy next week (based on the protocol).
3. Based on this plan, it looks like MD Anderson is recommending localized radiation which Dr. Khan is thinking towards proton beam radiation, mainly because it offers the best chance at minimizing harmful effects of radiation while allowing higher doses of radiation to be used on the tumor. Of course, now we are going to have to figure out WHERE we will get the radiation done because it is only at certain places in the country. MD Anderson is one option but we know that they are out of network for our insurance. We might be able to find an "in-network" option.
So that's where we are. We don't have a lot more answers and it was a rather frustrating day but at least it's a tiny step in the right direction.
I gotta go clean up the gym and head home so I"ll sign off...
Rachel
Sunday, May 31, 2009
Quick Note
Quick note,
According to CB, Facebook, and personal emails, the votes for Roger are flying in! Keep 'em coming at www.richmondmom.com.
When Roger left Charlotte yesterday, she was fading into dreamland. Our date was very nice. Ruby Tuesday's for dinner and the movie, "UP!" which was far more thoughtful than I had anticipated. Not a little kid movie and the Pixar folks were correct when they said we might not want to take CJ to see it just yet. Some of the humor, sight gags, and puns were gut busting, though.
Fun day of private art classes and trainings at Romp n' Roll while Grandpa and Juanita watched Charlotte.
We're just finishing up here and we're headed down the MCV shortly.
Vintric (sp?) drain may be coming out soon (if not already).
More details as we learn them.
According to CB, Facebook, and personal emails, the votes for Roger are flying in! Keep 'em coming at www.richmondmom.com.
When Roger left Charlotte yesterday, she was fading into dreamland. Our date was very nice. Ruby Tuesday's for dinner and the movie, "UP!" which was far more thoughtful than I had anticipated. Not a little kid movie and the Pixar folks were correct when they said we might not want to take CJ to see it just yet. Some of the humor, sight gags, and puns were gut busting, though.
Fun day of private art classes and trainings at Romp n' Roll while Grandpa and Juanita watched Charlotte.
We're just finishing up here and we're headed down the MCV shortly.
Vintric (sp?) drain may be coming out soon (if not already).
More details as we learn them.
Thursday, May 28, 2009
A Lot of Adventure
Well, we've had a lot of adventure since the last post. After she got settled, she was talking up a storm but then she started some erratic behavior. Her tongue kept protruding out of her mouth and she was making some very jerky movements. It was difficult to keep her still and she kept trying to pull out her lines going straight into her head (!!!). They gave her some benadryl and morphine with no results and then took her down for a head CT just to check for no additional internal bleeding. The CT scan looked clear. Finally about 9 PM they decided to try Atavan and that gave almost immediate results. She was much calmer although she was still talking with her tongue out of her mouth and wiggling all over the place.
The short story is: she hasn't slept (at all) since waking up from the surgery about 4 PM yesterday and she is definitely not talking as much. At one point, the neurosurgeon was thinking she was having seizures but the neurologist thinks it's probably more just swelling and the combination of meds. They had her on a different anti-seizure med than they used during the last two surgeries so they have since changed back to the original med. We are just in a waiting game. Her BP was a little elevated and she got some blood last night but otherwise her levels seem ok with everything.
I got very little sleep last night (some but in fits and spurts). The most I got was from about 6-8 this morning. We've had visits from Auntie Retta and Grandpa and Juanita are here now. I'll be going to work in a little bit. Yay for caffeine.
So to make a long story short, we just keep monitoring everything and make sure there aren't any erratic changes in the next little while. As the swelling goes down, we should see her return to a more "normal" level of everything.
She will have a full head and spine MRI tomorrow morning so we'll get lots more information then.
Now time to seek out some food for me...
Rachel
UPDATE:
After almost 21 hours of wakefulness and restlessness, Charlotte finally fell asleep about 1 PM. Dr. Tye had been by to see her and concurred that she probably was not having seizures but was more likely just feeling the effects of surgery, medication, etc. He was happy with her blood pressure and how she looked and just advised us to "hang in there".
I went home to refresh before work and managed to get in an hour or so nap on our new (and much needed) mattress. Hooray!
Then I met up with Roger at Romp n' Roll and took over the evening shift while he headed up to N. Va for an Uptown Gig. The work allowed me to at least clear my head a little and get some much-needed paperwork done.
Now back at the hospital and it seems that she has been asleep the ENTIRE time. Of course, I joked with my in-laws, "oh, so you kept her asleep so now she can be awake all night" but I have a feeling she will sleep for a while longer. Her BP level is great and everything else looks good. She has been resting peacefully. Of course she hasn't eaten much so I'm sure that she will wake up HUNGRY. Hopefully she will either wake up briefly before midnite and be able to eat a little or she'll just sleep straight on through till her MRI tomorrow. Tomorrow is a full head and spine MRI with and without contrast. She hasn't had one like this since her initial diagnosis. They will be checking her up and down (literally) for any signs of the tumor spreading as well as getting an idea of what we have left to fight.
More to report later. For now, I am going to seize the opportunity to get some rest.
Rachel
The short story is: she hasn't slept (at all) since waking up from the surgery about 4 PM yesterday and she is definitely not talking as much. At one point, the neurosurgeon was thinking she was having seizures but the neurologist thinks it's probably more just swelling and the combination of meds. They had her on a different anti-seizure med than they used during the last two surgeries so they have since changed back to the original med. We are just in a waiting game. Her BP was a little elevated and she got some blood last night but otherwise her levels seem ok with everything.
I got very little sleep last night (some but in fits and spurts). The most I got was from about 6-8 this morning. We've had visits from Auntie Retta and Grandpa and Juanita are here now. I'll be going to work in a little bit. Yay for caffeine.
So to make a long story short, we just keep monitoring everything and make sure there aren't any erratic changes in the next little while. As the swelling goes down, we should see her return to a more "normal" level of everything.
She will have a full head and spine MRI tomorrow morning so we'll get lots more information then.
Now time to seek out some food for me...
Rachel
UPDATE:
After almost 21 hours of wakefulness and restlessness, Charlotte finally fell asleep about 1 PM. Dr. Tye had been by to see her and concurred that she probably was not having seizures but was more likely just feeling the effects of surgery, medication, etc. He was happy with her blood pressure and how she looked and just advised us to "hang in there".
I went home to refresh before work and managed to get in an hour or so nap on our new (and much needed) mattress. Hooray!
Then I met up with Roger at Romp n' Roll and took over the evening shift while he headed up to N. Va for an Uptown Gig. The work allowed me to at least clear my head a little and get some much-needed paperwork done.
Now back at the hospital and it seems that she has been asleep the ENTIRE time. Of course, I joked with my in-laws, "oh, so you kept her asleep so now she can be awake all night" but I have a feeling she will sleep for a while longer. Her BP level is great and everything else looks good. She has been resting peacefully. Of course she hasn't eaten much so I'm sure that she will wake up HUNGRY. Hopefully she will either wake up briefly before midnite and be able to eat a little or she'll just sleep straight on through till her MRI tomorrow. Tomorrow is a full head and spine MRI with and without contrast. She hasn't had one like this since her initial diagnosis. They will be checking her up and down (literally) for any signs of the tumor spreading as well as getting an idea of what we have left to fight.
More to report later. For now, I am going to seize the opportunity to get some rest.
Rachel
Wednesday, May 27, 2009
Surgery
Charlotte went in to surgery at 10:08am.
We woke up at about 4:30am and got to the hospital before 6:00. The valet parking didn't open until 6:00 so we had to wait. In that time I could have parked in the garage, got validated parking, and been upstairs getting ready for the big day. But then I heard the road construction made it very difficult to manuver so it looks like we went the proper route after all.
As we got all ready for the MRI, Charlotte started getting antsy so we watched Caillou videos on the iPhone. Paid for itself several times over as far as I'm concerned.
When we went down to the MRI room, we weren't there long before the anesthesiolgist (woah! There's a $10 word!) showed up to administer the happy juice. At first she didn't want to let them at her central line so I distracted her with pics on the phone (more added value) while they hooked her up. In about 30 seconds, she got this very silly grin on her face and thought everything was extremely amusing!
Then they picked her up, took her in to the MRI room and she was gone. It all happened so fast I didn't get to give her a kiss but it was ok. Rompy, Mickey, and the hand-made pink and purple blanket (I can't remember who made it for her off the top of my head) are with her. Dug the Up! dog waits patiently with us here in the [SQUIRREL!!] 7th floor lounge.
By the way, CJ was very happy to tell everyone that she has TWO dogs now!
So after they took CJ, I found myself without a lot of direction since they sort of mentioned where I should go to wait only in passing and I was a little distracted. So I hung out there for a little while and talked to a young man and his mother waiting for an MRI. Very nice with the "Yes sir" and the "No, sir" and all that. Even with the tiff we're having with Caringbridge, I told them about CB and Hopecam.org. Turns out he is one of triplet boys and has a younger sister in Romp n' Roll's age range. So of course I gave mom my card. (Always workin' it)
So I eventually made my way down to the ground floor waiting room, got a bite to eat and settled in to wait. I promptly fell asleep. My buzzing phone woke me up - Auntie 'Retta was calling trying to find me. Ends up She, Grandpa, and Juanita Bonita were looking for me all over. They were just a floor above in the 1st floor waiting room.
I'm spoiled with the 7th floor so the other waiting rooms just wouldn't do. I pulled Loretta up with me and started the sign-in process early. I got the sign-in sheet filled out and saw plenty of folks who remember Charlotte including Heather from Child Life. They seem to be all ready for us.
CJ will be in room 614 of the PICU which means for now, kids can't visit and we have to space out the number of adults but after a day or so, we certainly want people to stop by. It can do nothing but good for her.
So now we're camped out, waiting for word. They are supposed to call anytime now with an update.
"Charlotte's Devon" is headed over to have lunch with us and Dean from Glen Allen Golf just called to let us know the total from the fun-raiser was $140! Thanks to all who came out.
Just heard from Nurse Janice in the OR. Charlotte is still in surgery and things are going as expected. If she's still in surgery at 2:00 they'll call with another update.
More details as they come up.
Latest update:
They were finishing up and might be done within a half an hour. Charlotte has been stable the entire time and everything looks good so far.
I don't think I'll be making it to Romp n' Roll this afternoon. Anyone in my Wednesday classes will be in the very capable hands of Miss Samantha. (She's been doing so well covering my classes lately, I think I might be losing some of my kiddies to her classes!)
Thanks to Devon for a very tasty lunch.
Stay tuned...
She is out of surgery and looking GREAT!
She is still a little loopy from the anesthesia but that's mostly making her act very funny more than anything else. She is gradually getting tubes, a-lines, ivs, etc. taken out. She is talking and moving all her limbs. Looks a little pale and will probably have a small transfusion but overall we can't complain.
Dr. Tye thinks he got a LOT of tumor. No word on percentage but he is reasonably confident that he got a very large amount. He said the pathway was really clear and he was able to get quite a bit. She will probably have an MRI tomorrow or Friday and they are going to aim for both head and spine to get a full picture.
Her tumor samples have been sent off to the MCV lab as well as a lot that will be going to Houston by Friday.
We have a nice room in the PICU...actually one of the ones we had last time with lots of space and a great, sunny view of the capitol and the governor's mansion.
I think that's all we have to report for now.
Thanks for all the prayers and support.
Rachel and Roger
We woke up at about 4:30am and got to the hospital before 6:00. The valet parking didn't open until 6:00 so we had to wait. In that time I could have parked in the garage, got validated parking, and been upstairs getting ready for the big day. But then I heard the road construction made it very difficult to manuver so it looks like we went the proper route after all.
As we got all ready for the MRI, Charlotte started getting antsy so we watched Caillou videos on the iPhone. Paid for itself several times over as far as I'm concerned.
When we went down to the MRI room, we weren't there long before the anesthesiolgist (woah! There's a $10 word!) showed up to administer the happy juice. At first she didn't want to let them at her central line so I distracted her with pics on the phone (more added value) while they hooked her up. In about 30 seconds, she got this very silly grin on her face and thought everything was extremely amusing!
Then they picked her up, took her in to the MRI room and she was gone. It all happened so fast I didn't get to give her a kiss but it was ok. Rompy, Mickey, and the hand-made pink and purple blanket (I can't remember who made it for her off the top of my head) are with her. Dug the Up! dog waits patiently with us here in the [SQUIRREL!!] 7th floor lounge.
By the way, CJ was very happy to tell everyone that she has TWO dogs now!
So after they took CJ, I found myself without a lot of direction since they sort of mentioned where I should go to wait only in passing and I was a little distracted. So I hung out there for a little while and talked to a young man and his mother waiting for an MRI. Very nice with the "Yes sir" and the "No, sir" and all that. Even with the tiff we're having with Caringbridge, I told them about CB and Hopecam.org. Turns out he is one of triplet boys and has a younger sister in Romp n' Roll's age range. So of course I gave mom my card. (Always workin' it)
So I eventually made my way down to the ground floor waiting room, got a bite to eat and settled in to wait. I promptly fell asleep. My buzzing phone woke me up - Auntie 'Retta was calling trying to find me. Ends up She, Grandpa, and Juanita Bonita were looking for me all over. They were just a floor above in the 1st floor waiting room.
I'm spoiled with the 7th floor so the other waiting rooms just wouldn't do. I pulled Loretta up with me and started the sign-in process early. I got the sign-in sheet filled out and saw plenty of folks who remember Charlotte including Heather from Child Life. They seem to be all ready for us.
CJ will be in room 614 of the PICU which means for now, kids can't visit and we have to space out the number of adults but after a day or so, we certainly want people to stop by. It can do nothing but good for her.
So now we're camped out, waiting for word. They are supposed to call anytime now with an update.
"Charlotte's Devon" is headed over to have lunch with us and Dean from Glen Allen Golf just called to let us know the total from the fun-raiser was $140! Thanks to all who came out.
Just heard from Nurse Janice in the OR. Charlotte is still in surgery and things are going as expected. If she's still in surgery at 2:00 they'll call with another update.
More details as they come up.
Latest update:
They were finishing up and might be done within a half an hour. Charlotte has been stable the entire time and everything looks good so far.
I don't think I'll be making it to Romp n' Roll this afternoon. Anyone in my Wednesday classes will be in the very capable hands of Miss Samantha. (She's been doing so well covering my classes lately, I think I might be losing some of my kiddies to her classes!)
Thanks to Devon for a very tasty lunch.
Stay tuned...
She is out of surgery and looking GREAT!
She is still a little loopy from the anesthesia but that's mostly making her act very funny more than anything else. She is gradually getting tubes, a-lines, ivs, etc. taken out. She is talking and moving all her limbs. Looks a little pale and will probably have a small transfusion but overall we can't complain.
Dr. Tye thinks he got a LOT of tumor. No word on percentage but he is reasonably confident that he got a very large amount. He said the pathway was really clear and he was able to get quite a bit. She will probably have an MRI tomorrow or Friday and they are going to aim for both head and spine to get a full picture.
Her tumor samples have been sent off to the MCV lab as well as a lot that will be going to Houston by Friday.
We have a nice room in the PICU...actually one of the ones we had last time with lots of space and a great, sunny view of the capitol and the governor's mansion.
I think that's all we have to report for now.
Thanks for all the prayers and support.
Rachel and Roger
Friday, May 22, 2009
Letter to Caringbridge and Update from Houston
Here's an email I sent to the Caringbridge folks about the thermometer over there to the right. I realize that in the scheme of our lives, this is not that high on the list but it's kind of important to us.
Dear Caringbridge,
Thank you for your reply to my email concerning your "thermometer" on the website.
I have no problem with Caringbridge fundraising and as I've said, we and our support network have donated and (until recently) planned to continue our support past the end of Charlotte's treatment. My problem is with the use of Charlotte's name as if the donation will be going to help her directly. It is very misleading. This has already been a problem as a friend of ours clicked on the link and sent a donation to Caringbridge thinking it was going to Charlotte. He is not happy and several of our fellow Caringbridge users aren't either. We've heard that other users have complained and have also been refused by you. Not the way to garner loyalty.
Dear Caringbridge,
Thank you for your reply to my email concerning your "thermometer" on the website.
I have no problem with Caringbridge fundraising and as I've said, we and our support network have donated and (until recently) planned to continue our support past the end of Charlotte's treatment. My problem is with the use of Charlotte's name as if the donation will be going to help her directly. It is very misleading. This has already been a problem as a friend of ours clicked on the link and sent a donation to Caringbridge thinking it was going to Charlotte. He is not happy and several of our fellow Caringbridge users aren't either. We've heard that other users have complained and have also been refused by you. Not the way to garner loyalty.
I will make my request only once more, please take Charlotte's name off of the thermometer ad. Paying or not paying a fee for the service is not an issue for us. Having our name associated with an organization with questionable ethics is. The thermometer idea is great. Just take the names off of it and make it clear that it's for Caringbridge and not the user. It's especially confusing when the users (like us) are frequently in the middle of fundraising themselves.
In case you didn't notice, we have over 90,000 hits from about 700 independent viewers. How many more people are following other patients as well? I would say it's very bad business to piss off that many people at once.
I've been shouting the praises of CB all over the place. I even told someone about it this morning so I have not given up on you yet. Do right by us and it could be very good for you. Refuse us, and our friends, again and we're gone. Your choice. Personally, I really like CB and don't want to leave but I have discussed it with my family and we will.
Instead of forcing this on us, why not enlist our help? Obvoiusly, there is a great deal of organizational experience here.
Sincerely,
Roger Reynolds
Don't hate them yet. We'll give them a chance to work with us. CJ update later!
Alright, here it is now, your moment of Zen...
I will warn you that I have had a very long day (and two margaritas) so I apologize in advance for any typos or "crazy talk".
We made it to and through the behemoth that IS MD Anderson fairly well. The shuttle got us to the hospital without much ado and with the help of some handy greeters, we found our way to the children's clinic.
WOW! It's quite an operation. Similar in scope to the ASK clinic at MCV but even more impressive. There was a LARGE playroom and lots of books to keep CJ more than amused. While we were there, the music therapist stopped in for a session with the kids. It was well attended and Charlotte joined in the fun after some encouragement. She even got in a request for Frosty the Snowman.
The receptionists and all the staff just LOVED her bald chicks rock shirt that she wore proudly today. She made fast friends with everyone and charmed the pants off of just about everyone in breathing distance. That's our girl.
I filled out oodles of paperwork, summarizing for the umpteenth time Charlotte's birth history, health history, developmental milestones, etc. Seriously...can we not get electronic records that automatically transfer this stuff from doctor to doctor???
I also dropped a check for $2500 for the evaluation. Turns out we are out of network here in Houston so we will start paying down that $8K deductible. Thanks to the fundraisers...we couldn't be here without you!
Our appointment for paperwork was at 9:30 and our appointment for Dr. Wolff was 10:30. We made it in to see the doc about 11 am (not bad for getting squeezed in at the last minute). Dr. Wolff came in, met us, greeted Charlotte, and got the "low down" on her history and scans. He explained the procedure with the evaluation of her tumor and how the process works and then decided to send us immediately over to see Dr. Brown in the research area of the medical school. He told us to wait and that he would get us directions and then he promptly left the building...
We were kind of left in limbo land for a while but eventually got a medical data specialist to walk us over to the medical school herself (it was about a four block walk). Meanwhile, we got to hear her interesting story: she was living in New Orleans during Katrina and ended up needing to evacuate. Interestingly (still..) she stayed during the hurricane at Nicolas Cage's house (a friend of a friend) in New Orleans and then ended up borrowing his car to get out of the city since their cars were flooded out. Crazy! She ended up in Houston and hasn't been back since.
So we met with Dr. Robert Brown who is a researcher at the University of Texas Medical School. He is also a graduate of MCV (go figure!). He shared a few journal articles which he has published on this process. The official term is morphoproteomics (for any of you interested in googling it). The science behind it is pretty much beyond my capability but basically this is a VERY new and VERY experimental process used for cancers and other diseases for which typical therapy is not successful. According to Dr. Wolff, only about a dozen people have been through this process before Charlotte and maybe only one her age. The doctor will look at the tumor markers under a microscope and analyze the life cycle of the tumor. By this process, they will recommend directions for therapy which may include drugs that are off-label (i.e. they are not typically used for cancer treatment) and/or drugs that may not have been tested on children. All the drugs are FDA approved but they may not have been through clinical trials with kids.
SOOO...we basically told Dr. Brown that we wanted to move forward with things. He gave us things to ask for (more tumor slides after Charlotte's next surgery) and we headed back towards MD Anderson for lunch. We ended up at one of the many eating establishments available on this campus where there was (surprise) a Chick-Fil-A! Hooray.
After lunch, we went back up to the clinic. We weren't exactly sure when Dr. Wolff would see us again but we knew that he was expected back from a lecture about 2 PM. Charlotte resumed her playing in the playroom and we met volunteers and child life folks who helped give her (and us) some extra TLC. The highlight of the day was getting to see this girl named Bailey ring the bell for the end of her treatment. Not sure of the diagnosis but I'm guessing Leukemia or Lymphoma. She was another cool bald chick and looked to be in her mid to late teens. There was a big announcement made as Bailey came out to ring the big bell for the end of her treatment. Charlotte walked right up to see the events and even ran up to Bailey and gave her a big hug. There wasn't a dry eye in the house. Ok, well, I was bawling!!
Then we waited...and waited...and waited. Finally about 4 (or so) we got back into the clinic again and we met with one of the other oncologists on staff. He finished taking Charlotte's health history and THEN we met with Dr. Wolff again. He helped talk us through the next steps as we discussed possible options.
We learned that there are certain chemotherapy drugs that she may be able to take very soon after surgery (depending, of course, on how the surgery plays out).
We also discussed radiation options (whole head and spine vs. localized and proton beam radiation which is only available at about three places in the country...MD Anderson is one). No decisions made today, of course. All of this depends on how the surgery plays out, how the initial rounds of chemo go, and what the morphogenesis results tell us.
But here is what was made very clear to Roger and to me: Charlotte has a very dangerous, very aggressive tumor that is (frustratingly) not responding to many of the typical therapies. We are embarking on pretty much unexplored territory when it comes to therapy options but this is pretty much all we have. There is much danger of the cancer metastisizing (into her spinal fluid or other areas of the brain) and there is much danger of the cancer continuing to grow.
Slight segueway...there is an episode of the Simpsons where Homer actually tries to gain weight so he can go on disability and work from home. In his attempt to gain weight, he goes on a super fat diet and takes the family along with him. In a scene where Homer tries to get the kids to eat fat-upon-fat, Bart responds "Dad, my heart hurts!" and Homer replies, "Butter your bacon!!!"
Well here we are....my heart hurts. And not from the buttering of the bacon. Over the last few weeks, we keep digging deeper into this process and I continue to realize how grave her conditino is. The fact that her tumor is not dying despite the poison we put in her body. The very fact that we are having to resort to experimental, aggressive, and potentially dangerous medicines to keep her alive. That makes my heart hurt.
I feel this weight in my chest that won't go away and I am genuinely sad. I fought back many tears today (and a few slipped out anyway). I know that there is still hope. I know we are not at the end of the line. But I am not nearly the picture of optimism that I felt about 3 months ago. This is hard stuff and it will take me a while to process this.
Ladies and gentlemen, the eye of the hurricane is getting ready to pass. Get ready for the rest of that oncoming storm. We can't prepare for much because EVERYTHING...every step in the next part of our journey....hangs in the balance of the step that comes before. Her chemo treatment will be determined by how well she responds to the surgery. And radiation will be determined by the success of the surgery and the results of the analysis. And all of the experimental stuff will hinge on how everything else plays out. I can't plan ANYTHING anymore...
So, just to finish the story of the day: we FINALLY left the hospital at about 6:10 PM (after being there since before 9 AM) and the hotel shuttle never came to pick us up (despite 3 telephone calls) so we eventually decided to hoof it the 1/2 mile or so back to the hotel on our own. Not a bad walk and thank goodness for Google maps on our phones.
Just so we don't end on a downer, we did have a lovely evening with Roger's Uncle Tom. We went to dinner for Tex Mex (Roger and I had been craving fish tacos and, yes, Margaritas). Charlotte was a doll and was serenaded by the mariachi band. She really loved it when they played Old McDonald!!
We will leave tomorrow and journey back to Virginia. More to update later.
Rachel
Thursday, May 21, 2009
We are Here in Houston
Well, here we are in Houston, TX.
The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!
Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.
I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.
When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!
We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.
Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.
So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:
I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....
I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)
So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.
When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.
I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.
In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)
ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.
I think that's all we have to report for now.
Rachel
The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!
Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.
I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.
When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!
We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.
Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.
So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:
I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....
I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)
So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.
When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.
I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.
In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)
ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.
I think that's all we have to report for now.
Rachel
Tuesday, May 12, 2009
What a Good Day!
What a good day! While I'm still not over feeling exhausted all the time, at least I'm not a bundle of nerves and anxiety over the unknown. that helps a lot.
Charlotte had a great day with visits from Wyatt and Heather, walks around the neighborhood, lots of exercising, and lots of eating.
We have a plan and an itinerary. We will be flying on Air Tran out to Houston on May 21st and returning on May 23rd. Our meeting at the clinic is on May 22nd. Thanks to our wonderful network of resources, we have learned about shuttles from the airport to the hotels/hospital area (hence no need for a rental car) as well as some good hotel accomodations for our stay.
Also, thanks to our wonderful staff at Romp n' Roll (as well as help from a few of the other Romp n' Rollers in the Richmond area), I think we've just about got coverage at the store covered while we are away.
We are still planning on surgery on the 27th. My mom leaves tomorrow to go back to Florida (bye Granny!). Roger's dad (Grandpa) and Juanita Bonita will be back her on the 26th in preparation for her surgery and we're getting some other "ducks in a row" for the weeks to come.
It's nice when the stars seem to align.
On a not so good note, it looks like the insurance appeals are not going to go as hoped. After our second appeal letter, Humana continues to maintain that we are well within our rights to choose MCV and they are well within THEIR rights to charge us an out-of-network rate for choosing MCV. End of story. The short answer is that I will follow up with our rep from the insurance commission and possibly make one final appeal through our delegate representative who has been following the case to see if he has any "pull" but I think the 8-ball is telling us "all signs point to NO".
Thank goodness to those of you who have led the charge on those fundraisers because we are gonna need them!!
Speaking of which, it looks like the Glen Allen Golf event has been rescheduled for next Wednesday (May 20th) from 7-10 PM. Mini-golf, batting cages, and driving range. Pray for sunshine and come out to see us off to Houston!
We also have the shopping events this weekend. Saturday 5/16: Five-Below (at VCC). You need to bring a flyer. We have LOTS of flyers at Romp n' Roll. 10% goes to Charlotte so stock up on your summer pool noodles, bouncy balls, and other un-necessary junk....
THEN Sunday 5/17 at Everything But Water (bathing suits, etc.) in the Short Pump Mall. I don't know if you need a flyer of some kind for this but 10-15% should go to Charlotte and I understand that there will be a chick-fil-a wheel with prizes and opportunities to help there as well (with food???). Thanks to Torrie for arranging this.
It looks like we will be getting back into town after the Brain Tumor Awareness concert at Ashland Coffee and Tea (featuring Susan Greenbaum and Cheryl Fare). I am SO sorry that we will miss this because I know it will be great. Please come out and support the event for us! There will be a 50/50 raffle for Charlotte and a chance to hear some great music.
That is all I have to say for now. Rumor has it Charlotte will be making an appearance at a Princess class tomorrow. And I get to watch the season finale of LOST tomorrow night. And did I mention that I get my new iphone tomorrow? Should be a good day....Signing off...
Rachel
Charlotte had a great day with visits from Wyatt and Heather, walks around the neighborhood, lots of exercising, and lots of eating.
We have a plan and an itinerary. We will be flying on Air Tran out to Houston on May 21st and returning on May 23rd. Our meeting at the clinic is on May 22nd. Thanks to our wonderful network of resources, we have learned about shuttles from the airport to the hotels/hospital area (hence no need for a rental car) as well as some good hotel accomodations for our stay.
Also, thanks to our wonderful staff at Romp n' Roll (as well as help from a few of the other Romp n' Rollers in the Richmond area), I think we've just about got coverage at the store covered while we are away.
We are still planning on surgery on the 27th. My mom leaves tomorrow to go back to Florida (bye Granny!). Roger's dad (Grandpa) and Juanita Bonita will be back her on the 26th in preparation for her surgery and we're getting some other "ducks in a row" for the weeks to come.
It's nice when the stars seem to align.
On a not so good note, it looks like the insurance appeals are not going to go as hoped. After our second appeal letter, Humana continues to maintain that we are well within our rights to choose MCV and they are well within THEIR rights to charge us an out-of-network rate for choosing MCV. End of story. The short answer is that I will follow up with our rep from the insurance commission and possibly make one final appeal through our delegate representative who has been following the case to see if he has any "pull" but I think the 8-ball is telling us "all signs point to NO".
Thank goodness to those of you who have led the charge on those fundraisers because we are gonna need them!!
Speaking of which, it looks like the Glen Allen Golf event has been rescheduled for next Wednesday (May 20th) from 7-10 PM. Mini-golf, batting cages, and driving range. Pray for sunshine and come out to see us off to Houston!
We also have the shopping events this weekend. Saturday 5/16: Five-Below (at VCC). You need to bring a flyer. We have LOTS of flyers at Romp n' Roll. 10% goes to Charlotte so stock up on your summer pool noodles, bouncy balls, and other un-necessary junk....
THEN Sunday 5/17 at Everything But Water (bathing suits, etc.) in the Short Pump Mall. I don't know if you need a flyer of some kind for this but 10-15% should go to Charlotte and I understand that there will be a chick-fil-a wheel with prizes and opportunities to help there as well (with food???). Thanks to Torrie for arranging this.
It looks like we will be getting back into town after the Brain Tumor Awareness concert at Ashland Coffee and Tea (featuring Susan Greenbaum and Cheryl Fare). I am SO sorry that we will miss this because I know it will be great. Please come out and support the event for us! There will be a 50/50 raffle for Charlotte and a chance to hear some great music.
That is all I have to say for now. Rumor has it Charlotte will be making an appearance at a Princess class tomorrow. And I get to watch the season finale of LOST tomorrow night. And did I mention that I get my new iphone tomorrow? Should be a good day....Signing off...
Rachel
Friday, May 8, 2009
A Lot to Consider
Hi all,
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.
The good news is that her blood counts look GREAT. Everything has come up where it needs to be.
Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.
On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).
Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.
Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.
Rachel
We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.
Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.
The good news is that her blood counts look GREAT. Everything has come up where it needs to be.
Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.
On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).
Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.
Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.
Rachel
We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.
Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.
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