Doing a whole lotta nuthin' sure makes me tired!
Charlotte didn't settle in to sleep until after midnight last night (sheesh). I did manage to get her to eat a few veggie straws before bed in hopes that it would sustain her a little longer during the day. I woke up and got myself ready, going downstairs while she was still sleeping to eat breakfast. I figured a hearty breakfast would help me hold out till proton therapy so I ate the leftovers from Roger's Mexican lunch the day before. They were good....and filling!
Then I roused the princess and we set off for the children's cancer center. We didn't have an appointment but Roger insisted that I should just "show up" and they'd work us in. About 10 AM they got our labs (we had come in about 8:30) and about 11:30 Reh, our nurse, let us know that her labs looked pretty good and instead of seeing a doc at the clinic we should just go ahead over to the proton center. Her weekly "checkup" with the radiation oncologist was scheduled for 11:30 and Reh figured as long as some medical professional was following up with her, they didn't need to see her till Wednesday.
So we trudged over to the proton center. The shuttle ride was not bad, actually. Got there, checked in, they took her vitals, and we waited.
And waited.
And waited.
Finally I asked someone what was up and they looked into it. Turns out that Dr. Mahajan is out this week and so Charlotte is supposed to see Dr. Woo and HE is seeing all his patients on Tuesday. Nobody had told us this, but it was on our newly revised schedule. BUT the newly revised scheduled had not been posted online. I was told the solution to this is to get a new printout of the schedule every Monday morning to assure accuracy. I'm not sure how I can get a printout before coming TO the proton center for my Monday appointment but somehow that has escaped everyone else's logic. Maybe the radiation gets to their brains a little in this place.
Anyway, so we were just MEGA early for her proton appointment that was scheduled at 1:30 (and of course, in true form, they didn't see her till 2:30). I did ask about moving up her time slot but they don't have anything available earlier for two weeks when she will then have a 10:30 AM slot.
Through all this, Charlotte never complained once. She never asked for food. Never said she was hungry. We did snuggle and cuddle a few times, which was nice given the cold shoulder she usually passes my way. We read some books and she entertained herself in the play areas. Finally it was her turn and Grandpa and I headed off in search of lunch for me (at 3 PM). She finally roused around 5-ish and we headed back to RMH for dinner. She did eat some cheese slices, applesauce, and a bunch of crackers tonight. And some chocolate milk. Her belly is getting VERY full and kind of rigid. She has not been able to bend down all day and she tells me that it hurts her tummy. the kid needs to POOP!! We keep giving her mag citrate and getting her to walk as much as possible. She told me that she "doesn't like to poop" so I hope she's not holding it in voluntarily. That could be a problem. I told her that she doesn't get to watch her "new favorite" goodnight video until she goes poopie so hopefully we will get results soon.
Other than that, she doesn't seem to be demonstrating any ill effects from the radiation (knock on wood). She is full of storytelling today and the bulk of our conversations revolve around her retelling some facts or plot points from Dora, Diego, Sid the Science Kid, SuperWhy, etc. It's very cute! Especially when she says things like, "Condors are the largest flying birds in the world."
Today I was the chauffer (stroller pusher), chaperone, and master chef. Plus I got in some light reading. Nabbed a book from the book exchange that has been very good so far. It's the newest Wally Lamb book and I've enjoyed his other two novels. We'll see. Oh, and I did payroll. The romp n' roll employees will be happy. Thank goodness for remote internet and quickbooks online. So I actually did some "work" today too.
Charlotte looked absolutely ADORABLE in the dress Aunt Phyllis sent. She wore it today and wowed everyone. She was a purple princess today. I will attach a photo. In this picture, she is making a grilled cheese sandwich using an iron. Very creative, I thought!
We did get to end our day with a skype chat with Daddy. That was fun and Charlotte was actually engaging for a few minutes. Seems like things are going well in VA as well. One day down....how many more to go? September seems a LONG way away.
Showing posts with label princess. Show all posts
Showing posts with label princess. Show all posts
Monday, July 27, 2009
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
Tuesday, June 9, 2009
Staying Busy, Fundraising Update
Charlotte had a great day yesterday and a very good am this morning.
Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.
Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.
One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.
So I got to go back out to deliver some more posters/flyers to friendly local businesses.
Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.
I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.
This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.
Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.
The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.
Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.
Keep cruizin' the CB sites. There are lots of amazing stories goin on!
Rog
Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.
We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.
We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)
Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.
We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.
Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.
We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.
If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.
Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.
Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!
So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.
Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.
Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?
Signing off...
Rachel
Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.
Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.
One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.
So I got to go back out to deliver some more posters/flyers to friendly local businesses.
Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.
I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.
This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.
Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.
The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.
Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.
Keep cruizin' the CB sites. There are lots of amazing stories goin on!
Rog
Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.
We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.
We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)
Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.
We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.
Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.
We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.
If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.
Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.
Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!
So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.
Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.
Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?
Signing off...
Rachel
Sunday, June 7, 2009
Damn, she's adorable!
Wow! What a day yesterday. As usual, our friends and family get here and we immediately make them work. Amy was no exception. She got here Friday morning and was watching Charlotte almost before she got her luggage.
Yesterday morning, both Rachel and I were running around like proverbial chickens getting ready for classes at Romp n' Roll (Rachel) and the Ashland Strawberry Faire (me) so Amy was on duty early. It definately helps that Charlotte, who had never met Aunt Amy, seems to love her to death.
For the sake of plot development, I need to wander off track for a bit.
The weather the last few days has been rainy to say the least. We had a couple of thunderstorms that were worthy of the Illinois storms I remember from when I was little. Samantha, Emily, and I, along with a "grownup" member were stuck in Romp n' Roll Wednesday while the heavens open up. The wind was blowing, the trees were boogying (sp?), the rain was going sideways, and, to our amazement, a Target shopping cart got loose and was slowly being pushed around the parking lot area in front of our door. It was moving in an almost nonchalant manner, as if the ghost taking its purchases to the car (ghost train?) could care less about the weather (I guess they wouldn't, would they?).
When the cart passed the front of RNR, we were amused and then got distracted by the hope that there wasn't a tornado setting down in the parking lot. When, a few minutes later, the cart passed by again, going the other direction, in the same nonchalant manner, then it started getting bizarre. Maybe the ghost forgot where it parked the ghost train.
This poor, indecisive cart passed by our front door no less than four times! We never saw it turn around and the fact that it did kept us nervous about tornados.
We also had some ceiling tile casualties in the back right next to the garage door. If it's not a leak, it's probably rain that got blown up under the awning and got in via the top of the garage door. But MAN! did it rain!
It kept raining and spitting and threatening to rain and didn't stop until Saturday morning. I was telling everyone how nice it was going to be for the Strawberry Faire during my Friday classes but it was hard to convince people with the gloomy weather right outside the window.
Which conveniently brings me back to my original story (How 'bout DAT fer a Segway?! Hemingway, eachyer heart out, eh?!).
I couldn't set up the tent and tables for our booth at the Strawberry Faire until Saturday morning since it was still drizzeling off and on so I had to get up extra early and head over. Good thing we only live 1 mile away. :-)
Everything got set up with a minimum amount of drama and the Ashland Jaycees helped a great deal Their booth was next to ours and they always have someone willing to help out. When scheduling made me leave early and there was no place to put our stuff, they didn't hesitate a second. The Flanagans, fellow founders of the chapter, stepped right up and all our junk is sitting in their family room (guess I need to pick that up sometime today).
Charlotte (oh...right...this is supposed to be about her, isn't it?) and Aunt Amy walked down to the faire and talk about an attention hog! Amy said she had trouble actually getting TO the faire what with all the people recognizing CJ and stopping them to see the little princess. It didn't hurt that she was wearing a NEW red "Bald Chicks Rock" that Megan Blake's mother made for her (I told her she could get a cottage industry going with those) and her yellow wide brimmed hat "with the bow in the front!" Of course, Amy doesn't know any of these people and they keep coming up and talking to CJ like they know her which they probably do. Amy was a champ and resisted the urge to tell everyone, "Stay away from my child!" Very funny.
In the end, they did get to the faire and Charlotte walked all over the place and saw lots of friends, teachers, and RNR members all morning. I bought a slab o' strawberries (who didn't?) and we schlurped on them all day. CJ had developed the habit of only eating the skin of strawberries. Not sure why. But I encouraged her to take a big bite of these strawberries and once she did, there was no stopping her!
Another side note: I'm not fond of strawberries. Never really have been. I know they're really good for you and I can tolerate them without gagging but I never reach for a strawberry if I've got the munchies. Not like blueberries. (Mmmmm...blueberries...oohhhh!) But the strawberries they had at the Ashland Strawberry Faire yesterday might have changed my mind. Wherever they were from, Hanover or California, I don't care. They were sweet through and through and I think I ate a couple of little baskets by myself. Never in my life have I had a taste turnaround like that (except maybe with cottage cheese but that's another story).
Charlotte ate a bunch too.
Amy finally took her home after a good long while and when I got back to get ready for my Southern Horizon gig at Cold Harbor, Charlotte was presiding over a tea party with Amy, Rachel, and Uncle Kolbey. I got suckered into sitting down for a little bit too.
Damn, she's adorable!
The result was that Charlotte had a great day as did Romp n' Roll, the Greater Ashland Jaycees, 30,000 Ashland Strawberry Faire guests, and all those folks at Cold Harbor who got to see that incredible sunset followed by an amazing moonrise! (I haven't even heard about Kids Night Out yet!)
Today, Charlotte and I will be headed to her boyfriend Wyatt's 4th Birthday party. That can only mean that Charlotte's is right around the corner!
Hope this post hasn't strained your eyes too much.
Rog
p.s. I have added a new skill set to my resume...FACE PAINTING! I've never done it before and I was expecting someone else to do it yesterday but as fate would have it, I was the one available when someone asked for it. I'm attaching a little example of my new skill! :-P
Yesterday morning, both Rachel and I were running around like proverbial chickens getting ready for classes at Romp n' Roll (Rachel) and the Ashland Strawberry Faire (me) so Amy was on duty early. It definately helps that Charlotte, who had never met Aunt Amy, seems to love her to death.
For the sake of plot development, I need to wander off track for a bit.
The weather the last few days has been rainy to say the least. We had a couple of thunderstorms that were worthy of the Illinois storms I remember from when I was little. Samantha, Emily, and I, along with a "grownup" member were stuck in Romp n' Roll Wednesday while the heavens open up. The wind was blowing, the trees were boogying (sp?), the rain was going sideways, and, to our amazement, a Target shopping cart got loose and was slowly being pushed around the parking lot area in front of our door. It was moving in an almost nonchalant manner, as if the ghost taking its purchases to the car (ghost train?) could care less about the weather (I guess they wouldn't, would they?).
When the cart passed the front of RNR, we were amused and then got distracted by the hope that there wasn't a tornado setting down in the parking lot. When, a few minutes later, the cart passed by again, going the other direction, in the same nonchalant manner, then it started getting bizarre. Maybe the ghost forgot where it parked the ghost train.
This poor, indecisive cart passed by our front door no less than four times! We never saw it turn around and the fact that it did kept us nervous about tornados.
We also had some ceiling tile casualties in the back right next to the garage door. If it's not a leak, it's probably rain that got blown up under the awning and got in via the top of the garage door. But MAN! did it rain!
It kept raining and spitting and threatening to rain and didn't stop until Saturday morning. I was telling everyone how nice it was going to be for the Strawberry Faire during my Friday classes but it was hard to convince people with the gloomy weather right outside the window.
Which conveniently brings me back to my original story (How 'bout DAT fer a Segway?! Hemingway, eachyer heart out, eh?!).
I couldn't set up the tent and tables for our booth at the Strawberry Faire until Saturday morning since it was still drizzeling off and on so I had to get up extra early and head over. Good thing we only live 1 mile away. :-)
Everything got set up with a minimum amount of drama and the Ashland Jaycees helped a great deal Their booth was next to ours and they always have someone willing to help out. When scheduling made me leave early and there was no place to put our stuff, they didn't hesitate a second. The Flanagans, fellow founders of the chapter, stepped right up and all our junk is sitting in their family room (guess I need to pick that up sometime today).
Charlotte (oh...right...this is supposed to be about her, isn't it?) and Aunt Amy walked down to the faire and talk about an attention hog! Amy said she had trouble actually getting TO the faire what with all the people recognizing CJ and stopping them to see the little princess. It didn't hurt that she was wearing a NEW red "Bald Chicks Rock" that Megan Blake's mother made for her (I told her she could get a cottage industry going with those) and her yellow wide brimmed hat "with the bow in the front!" Of course, Amy doesn't know any of these people and they keep coming up and talking to CJ like they know her which they probably do. Amy was a champ and resisted the urge to tell everyone, "Stay away from my child!" Very funny.
In the end, they did get to the faire and Charlotte walked all over the place and saw lots of friends, teachers, and RNR members all morning. I bought a slab o' strawberries (who didn't?) and we schlurped on them all day. CJ had developed the habit of only eating the skin of strawberries. Not sure why. But I encouraged her to take a big bite of these strawberries and once she did, there was no stopping her!
Another side note: I'm not fond of strawberries. Never really have been. I know they're really good for you and I can tolerate them without gagging but I never reach for a strawberry if I've got the munchies. Not like blueberries. (Mmmmm...blueberries...oohhhh!) But the strawberries they had at the Ashland Strawberry Faire yesterday might have changed my mind. Wherever they were from, Hanover or California, I don't care. They were sweet through and through and I think I ate a couple of little baskets by myself. Never in my life have I had a taste turnaround like that (except maybe with cottage cheese but that's another story).
Charlotte ate a bunch too.
Amy finally took her home after a good long while and when I got back to get ready for my Southern Horizon gig at Cold Harbor, Charlotte was presiding over a tea party with Amy, Rachel, and Uncle Kolbey. I got suckered into sitting down for a little bit too.
Damn, she's adorable!
The result was that Charlotte had a great day as did Romp n' Roll, the Greater Ashland Jaycees, 30,000 Ashland Strawberry Faire guests, and all those folks at Cold Harbor who got to see that incredible sunset followed by an amazing moonrise! (I haven't even heard about Kids Night Out yet!)
Today, Charlotte and I will be headed to her boyfriend Wyatt's 4th Birthday party. That can only mean that Charlotte's is right around the corner!
Hope this post hasn't strained your eyes too much.
Rog
p.s. I have added a new skill set to my resume...FACE PAINTING! I've never done it before and I was expecting someone else to do it yesterday but as fate would have it, I was the one available when someone asked for it. I'm attaching a little example of my new skill! :-P
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
Thursday, May 14, 2009
We are Staying Busy
Hi Everyone,
We just found out that the Shopping Day for Charlotte at Five Below (at VCC) has been EXTENDED to Sunday May 17th as well! We prefer that you take a "Shopping for Charlotte" flyer (we have lots at Romp n' Roll) but you can also tell them that you are shopping on behalf of Charlotte and they should credit your sale.
What a great day yesterday! Charlotte went with us to Romp n' Roll. We haven't had a day like that since before January. She participated in classes that we taught and then went to Princess class with 6 other girls. She was dressed in her Snow White costume complete with wig (for those of you who have seen last Halloween's photos, you know the look). Then we had lunch at Chic-Fil-A (so yummy), Mommy got her new iphone (yay!) and we went home for more fun.
I got to have my own "adult" playdate with a friend at Chili's yesterday afternoon while Uncle Kolbey played with Charlotte. Then it was home for dinner and LOST.
I couldn't have asked for a better day and I think Charlotte had a good time as well.
Today it's off to Virginia Blood Services. They are going to test my blood to make sure I can donate for her surgery in 2 weeks. We did not have time to do this before the last surgeries but can now. She and I have the same blood type so I can actually donate and designate the blood directly for her. There's a small fee but we think it's worth it. This is a good chance to remind everyone though: if you are eligible and able to give blood, please do so regularly. Blood donations are ALWAYS needed in Virginia and you will be helping kids (like Charlotte) and adults in need by giving regularly.
That's my PSA for the day.
Then we are heading over to "montessori house" for a lunch date. I know Charlotte will be excited to see her friends. Gotta go get ready for the day...
Rachel
We just found out that the Shopping Day for Charlotte at Five Below (at VCC) has been EXTENDED to Sunday May 17th as well! We prefer that you take a "Shopping for Charlotte" flyer (we have lots at Romp n' Roll) but you can also tell them that you are shopping on behalf of Charlotte and they should credit your sale.
What a great day yesterday! Charlotte went with us to Romp n' Roll. We haven't had a day like that since before January. She participated in classes that we taught and then went to Princess class with 6 other girls. She was dressed in her Snow White costume complete with wig (for those of you who have seen last Halloween's photos, you know the look). Then we had lunch at Chic-Fil-A (so yummy), Mommy got her new iphone (yay!) and we went home for more fun.
I got to have my own "adult" playdate with a friend at Chili's yesterday afternoon while Uncle Kolbey played with Charlotte. Then it was home for dinner and LOST.
I couldn't have asked for a better day and I think Charlotte had a good time as well.
Today it's off to Virginia Blood Services. They are going to test my blood to make sure I can donate for her surgery in 2 weeks. We did not have time to do this before the last surgeries but can now. She and I have the same blood type so I can actually donate and designate the blood directly for her. There's a small fee but we think it's worth it. This is a good chance to remind everyone though: if you are eligible and able to give blood, please do so regularly. Blood donations are ALWAYS needed in Virginia and you will be helping kids (like Charlotte) and adults in need by giving regularly.
That's my PSA for the day.
Then we are heading over to "montessori house" for a lunch date. I know Charlotte will be excited to see her friends. Gotta go get ready for the day...
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
Monday, May 11, 2009
Something of a Plan, Finally
Hello everyone,
Hope everyone had a great Mother's Day. We sure did. We opened Romp n' Roll up for open gym and let the kids have a good time. The crowd was pretty good.
Charlotte's numbers have been so good lately that we have come off the germophobe box which is great because I'm no good at being a germophobe. We even had visitors from St. James The Less. The Shiffletts came by with a Mother's Day present from the Sunday school class. Annabel (or "Annablell" as Charlotte calls her) is one of CJ's favorite friends and they had a lot of fun tickling Annabell's sister Piper on the knees!
We also took her down to Romp n' Roll to play and met up with The Hayes family from Montessori House. Anja is another of CJ's favs.
We then went to Panera with Granny and Uncle Kolby (walked from RNR in fact!) for Mother's Day dinner and then to Coldstone for dessert!
When we came home, I gave the princess a bath and settled in for the evening. A little bedtime drama having to do with a thrown book and not being tired but nothing too bad.
Overall, it was a very nice Mother's Day and as we've stated in various places, seemingly extra special.
The history of Mother's Day came up in conversation and after a little online research (We're kinda geeks that way), we found some very interesting information. I always went with the prevailing wisdom that it was just a fake holiday invented by Hallmark to sell cards. "NOT SO LIZZARD BREATH!" (there's your trivia question for the day) Turns out it's more of a peace movement/community organizing event with various religious roots. Here's one website that chronicles just a bit if the history.
http://www.momscape.com/articles/momsday.htm
As for the more serious side of things, no final word yet on anything.
Nothing.
Zip.
Nada.
Zilcho.
Feel left hanging? Us too. We're at that stage again where we really can't plan anything until we know more.
We'll let you all know as soon as we do.
Happy Monday.
OK, so we finally have something of a plan. And as usual, it looks very little like what we were hinting at last time I wrote.
After a good amount of back and forth between Rachel and Dr. Tye, it was determined that the MD Anderson team could, indeed, use the samples Dr. Tye removed during Charlotte's 2nd surgery as well as the last MRI scan so she doesn't have to have surgery this time until after we go to Houston.
That makes flying much more attractive as we won't be worrying about how she is going to handle travelling a week after a major brain operation although I was quite looking forward to the road trip in Grandpa's camping truck.
We wanted to see about Angel Flight but they would only let one parent go and we actually found a halfway decent rate on Airtran.
We've had some very generous donations come in recently which will take care of our travel expenses. Another reason to thank everyone!
That makes the schedule look something like this:
Thursday, May 21: Fly from Richmond to Houston
Friday, May 22: Meet with MD Anderson Drs.
Saturday, May 23: Fly back to Richmond
Tuesday, May 26: Check into MCV
Wednesday, May 27: Surgery #3
We'll probably be in the the hospital at least a week post-op recovering. Time to stock up on Morphine, Tylenol, and Dora videos!
We're hoping to get various family members here to help with things starting the 27th (maybe the 26th) including Grandpa and Juanita, Aunt Phyllis, Granny (again but this time WITH Grumps...I mean Gramps!), Anyone else who wants to drop in.
The Staff at Romp n' Roll has been forwarned that they may be asked to do some extra stuff (as if they haven't been asked before!) I'm confident, we will be able to work something out.
Another note about our staff at RNR. Throughout this whole experience, they have been the best staff any business owners could possibly have any right to hope for. They've come in at odd times, covered myriad classes, volunteered hours of work over and over and kept the business going when we were balls of stressed out goo! They are more perfect examples of how we couldn't do it without our support network.
We apologize to our customers for the revolving instructors but at least the replacements seem to be doing a great job.
Other news: The Glen Allen Golf Fun-raiser has been tentatively moved to Wednesday, May 20th.
Big new Fun-raiser in the works! Dr. Anna Madland of Atlee Chiropractic and Bill Roberts at WHAN 1430am Radio and I did a little mind melding and hashed out a little more of the "Yoga-thon" idea. It will be 100 "yoga-ists" doing 100 minutes of yoga And we would like to try doing this during the Strawberry Faire in Ashland on Saturday, June 6th. People would sponsor yoga-ists for $1.00 per minute and if every person on a mat got every minute sponsored, that would make $10,000 raised! So that's our goal. "Can we build it? Yes we can!" (Who knew President Obama liked Bob The Builder?
We want to get it going relatively early in the morning to avoid the heat so it will probably start 8:30 or 9:00am. We need 10 instructors and 100 (or more!) people to do the yoga. I know with our network, Dr. Anna's, and the Greater Ashland listening and reading public, we should have next to no trouble getting it together.
After the event, stick around for one of the coolest days of the year.
As per usual, Jackie Plank is knee deep in this one as well. Contact her at jplank@oscient.com to sign up or to sponsor a minute. Day-of sponsorships welcome if there is space. So please spread the word!
Thanks,
Rog
Hope everyone had a great Mother's Day. We sure did. We opened Romp n' Roll up for open gym and let the kids have a good time. The crowd was pretty good.
Charlotte's numbers have been so good lately that we have come off the germophobe box which is great because I'm no good at being a germophobe. We even had visitors from St. James The Less. The Shiffletts came by with a Mother's Day present from the Sunday school class. Annabel (or "Annablell" as Charlotte calls her) is one of CJ's favorite friends and they had a lot of fun tickling Annabell's sister Piper on the knees!
We also took her down to Romp n' Roll to play and met up with The Hayes family from Montessori House. Anja is another of CJ's favs.
We then went to Panera with Granny and Uncle Kolby (walked from RNR in fact!) for Mother's Day dinner and then to Coldstone for dessert!
When we came home, I gave the princess a bath and settled in for the evening. A little bedtime drama having to do with a thrown book and not being tired but nothing too bad.
Overall, it was a very nice Mother's Day and as we've stated in various places, seemingly extra special.
The history of Mother's Day came up in conversation and after a little online research (We're kinda geeks that way), we found some very interesting information. I always went with the prevailing wisdom that it was just a fake holiday invented by Hallmark to sell cards. "NOT SO LIZZARD BREATH!" (there's your trivia question for the day) Turns out it's more of a peace movement/community organizing event with various religious roots. Here's one website that chronicles just a bit if the history.
http://www.momscape.com/articles/momsday.htm
As for the more serious side of things, no final word yet on anything.
Nothing.
Zip.
Nada.
Zilcho.
Feel left hanging? Us too. We're at that stage again where we really can't plan anything until we know more.
We'll let you all know as soon as we do.
Happy Monday.
OK, so we finally have something of a plan. And as usual, it looks very little like what we were hinting at last time I wrote.
After a good amount of back and forth between Rachel and Dr. Tye, it was determined that the MD Anderson team could, indeed, use the samples Dr. Tye removed during Charlotte's 2nd surgery as well as the last MRI scan so she doesn't have to have surgery this time until after we go to Houston.
That makes flying much more attractive as we won't be worrying about how she is going to handle travelling a week after a major brain operation although I was quite looking forward to the road trip in Grandpa's camping truck.
We wanted to see about Angel Flight but they would only let one parent go and we actually found a halfway decent rate on Airtran.
We've had some very generous donations come in recently which will take care of our travel expenses. Another reason to thank everyone!
That makes the schedule look something like this:
Thursday, May 21: Fly from Richmond to Houston
Friday, May 22: Meet with MD Anderson Drs.
Saturday, May 23: Fly back to Richmond
Tuesday, May 26: Check into MCV
Wednesday, May 27: Surgery #3
We'll probably be in the the hospital at least a week post-op recovering. Time to stock up on Morphine, Tylenol, and Dora videos!
We're hoping to get various family members here to help with things starting the 27th (maybe the 26th) including Grandpa and Juanita, Aunt Phyllis, Granny (again but this time WITH Grumps...I mean Gramps!), Anyone else who wants to drop in.
The Staff at Romp n' Roll has been forwarned that they may be asked to do some extra stuff (as if they haven't been asked before!) I'm confident, we will be able to work something out.
Another note about our staff at RNR. Throughout this whole experience, they have been the best staff any business owners could possibly have any right to hope for. They've come in at odd times, covered myriad classes, volunteered hours of work over and over and kept the business going when we were balls of stressed out goo! They are more perfect examples of how we couldn't do it without our support network.
We apologize to our customers for the revolving instructors but at least the replacements seem to be doing a great job.
Other news: The Glen Allen Golf Fun-raiser has been tentatively moved to Wednesday, May 20th.
Big new Fun-raiser in the works! Dr. Anna Madland of Atlee Chiropractic and Bill Roberts at WHAN 1430am Radio and I did a little mind melding and hashed out a little more of the "Yoga-thon" idea. It will be 100 "yoga-ists" doing 100 minutes of yoga And we would like to try doing this during the Strawberry Faire in Ashland on Saturday, June 6th. People would sponsor yoga-ists for $1.00 per minute and if every person on a mat got every minute sponsored, that would make $10,000 raised! So that's our goal. "Can we build it? Yes we can!" (Who knew President Obama liked Bob The Builder?
We want to get it going relatively early in the morning to avoid the heat so it will probably start 8:30 or 9:00am. We need 10 instructors and 100 (or more!) people to do the yoga. I know with our network, Dr. Anna's, and the Greater Ashland listening and reading public, we should have next to no trouble getting it together.
After the event, stick around for one of the coolest days of the year.
As per usual, Jackie Plank is knee deep in this one as well. Contact her at jplank@oscient.com to sign up or to sponsor a minute. Day-of sponsorships welcome if there is space. So please spread the word!
Thanks,
Rog
Sunday, April 26, 2009
You're Awesome for Keeping Up with Us
Sunday morning and we're about to go over 76,000 hits. Don't you people have anything else to do? :-)
I KEED! I KEED! You're awesome for keeping up with us and we feel so supported even by just that number continuously rising.
The "Living With Cancer" Lisa Nichols Richardson Memorial Dinner went very well and at last count, we had a very rough total of over $1000 raised for Charlotte! Thanks so much to everyone involved especially Tina Adkins and Ann Mattio for asking us to be a part of it, constantly treating us as if we were doing THEM a favor. Rarely have I seen CJ overwhelmed by attention! :-)
A band called Fat Skippy played and they were pretty decent. Good party band if anyone is looking. Fatskippy.com (I think)
We had a very nice breakfast this morning at Cracker Barrel and Charlotte, as usual, had people literally gawking at her cuteness in her "Bald Chicks Rule" t-shirt, Ariel skirt, and Tinkerbell hat. The real finisher, though, was her pair of sunglasses. She started pulling this diva attitude thing that would have been really annoying normally but had us all in stitches this morning. It was like she had no time to be bothered with answering questions with anything other than perfunctory grunts. The princess had become a rock star.
And darn if the only ones who could get her to acknowledge them were the cute college boys in the rocking chairs out front as we were leaving! I need to make a trip to Green Top soon (to get my shotgun!).
Mommy went a little nuts (in a good way, I'm sure Dear) and cleaned the downstairs in a whirlwind burst of energy. All except for CJ's living room domain that constantly remains in a state of destruction. We'll get there on that. Looks good.
I am working on RNR stuff and updating the website (as you can read). For those of you with Facebook, please go to one of our sites to see what other events are coming up. I'll get more stuff up tonight.
Obama's 100 days parallels CJ's experience so we'll be marking the occasion at the hospital with methotrexate, vincristin, zofran, and poup. (Not sure of the spelling of any of those.) 100 days of diagnosis...wild.
At the benefit dinner yesterday, I had a profound realization of CJ's physical limitations when a bunch of the remaining kids, including Charlotte, went to play on the playground. I saw children younger and smaller than CJ running around on the equipment and throwing themselves around like nobody's business while at the same time, Charlotte, who still had a tremendously good time, had to move more cautiously. The best example was the slide. The steps were great and designed in such a way to be very easily navigated by everyone but the slides themselves were a different story. They had a handle at the top so children could grab it, swing under, and drop down the slide really fast. I saw several kids do this including the very young ones I mentioned before. Then as Charlotte got up to the top, it was a challenge just to sit down and get her to push herself over the edge.
I had gotten so used to the way she is, and have been so impressed by/proud of how far she has come, that I lost sight of how far there is to go. What's funny (odd) is that it didn't make me sad or feel sorry for myself or anyone else. Just kind of blew my mind in the way realizing the surreal nature of our lives tends to do. It also made me re-determined (real word) to help her improve physically as much as I can. As I've said, she's come so far already, I can't imagine she can't come that far again.
That's my mushy diatribe for the day. Get away from the computer and go enjoy the sunshine!
Well here I am at Romp n' Roll....(get ready for some FUN???) [Yeah, that's a little in-joke for all you die-hards out there!]
It has been a very good weekend after a very stressful week. Saturday was just an amazing series of events and everything worked out well. Roger already filled you in on the major details. I am very appreciative to Anne Mattio, Tina Adkins, and everyone else who helped to put the fundraising dinner together as well as everyone that came out to support it (and us).
Now I'm working on "stuff" at Romp n' Roll and trying to tie up a bunch of loose ends before the week begins. I keep jumping all over the place but at least I'm slowly moving forward.
Here are some ways that you (Charlotte's greatest fans) can help this week:
o I am still looking for someone who would like to design a simple poster or display board that we could take to fundraisers and events centered around Charlotte. It doesn't have to be fancy but it would basically have a few pics of Charlotte (we can supply those), a summary of her story, diagnosis, and treatment path, and then a place to display a calendar or list of other upcoming events. I'm thinking maybe something covered in fabric (?) and then we can use velcro to tack stuff up and trade out info. I would also love to use the board to promote great organizations that have already helped us like ASK, Connor's Heroes, Care Connection, etc. Anyway, if you have skills in this area (craftiness, graphic design, etc.) let me know. I did have one person with graphic desing skills offer up her services if someone was willing to help her.
o Register your child for a summer of fun (or birthday party) at Romp n' Roll! Yes, summer registration week is upon us and Roger and I will be busier than usual. A lot of you who follow us on this board are regular customers and we appreciate everything you do for us! One of the best ways you can continue to support us is by supporting our business or spreading the word. (Shameless plug, I know.)
Some other "official" fundraisers coming up towards the end of the week:
5/3: Qdoba Burrito Eating Contest at Willow Lawn. Register to enter the contest OR come out and EAT that night. Funds raised go towards Charlotte's health care expenses.
5/3: Need a bathing suit? Everything But Water at Short Pump Town Center will be donating 10-15% of proceeds from sales from 4-7 PM towards Charlotte. Go buy your bathing suit and then come to Qdoba!!
5/6: Glen Allen Golf (on US1 between Ashland and VCC) will be hosting an evening for Charlotte from 7-10 PM. Batting cages, mini golf, driving range...all with a portion of sales going back to help Charlotte. I think there will also be a longest drive contest and a closest to the pin contest.
So that's enough for now. I've got to get back to work and then go home.Thanks to everyone for your continued support and driving energy. You are really helping Roger and I get through this (and Charlotte too!!).
We are almost to round 3 which means that we will hopefully be near the halfway point of this marathon.
Happy day!Rachel
I KEED! I KEED! You're awesome for keeping up with us and we feel so supported even by just that number continuously rising.
The "Living With Cancer" Lisa Nichols Richardson Memorial Dinner went very well and at last count, we had a very rough total of over $1000 raised for Charlotte! Thanks so much to everyone involved especially Tina Adkins and Ann Mattio for asking us to be a part of it, constantly treating us as if we were doing THEM a favor. Rarely have I seen CJ overwhelmed by attention! :-)
A band called Fat Skippy played and they were pretty decent. Good party band if anyone is looking. Fatskippy.com (I think)
We had a very nice breakfast this morning at Cracker Barrel and Charlotte, as usual, had people literally gawking at her cuteness in her "Bald Chicks Rule" t-shirt, Ariel skirt, and Tinkerbell hat. The real finisher, though, was her pair of sunglasses. She started pulling this diva attitude thing that would have been really annoying normally but had us all in stitches this morning. It was like she had no time to be bothered with answering questions with anything other than perfunctory grunts. The princess had become a rock star.
And darn if the only ones who could get her to acknowledge them were the cute college boys in the rocking chairs out front as we were leaving! I need to make a trip to Green Top soon (to get my shotgun!).
Mommy went a little nuts (in a good way, I'm sure Dear) and cleaned the downstairs in a whirlwind burst of energy. All except for CJ's living room domain that constantly remains in a state of destruction. We'll get there on that. Looks good.
I am working on RNR stuff and updating the website (as you can read). For those of you with Facebook, please go to one of our sites to see what other events are coming up. I'll get more stuff up tonight.
Obama's 100 days parallels CJ's experience so we'll be marking the occasion at the hospital with methotrexate, vincristin, zofran, and poup. (Not sure of the spelling of any of those.) 100 days of diagnosis...wild.
At the benefit dinner yesterday, I had a profound realization of CJ's physical limitations when a bunch of the remaining kids, including Charlotte, went to play on the playground. I saw children younger and smaller than CJ running around on the equipment and throwing themselves around like nobody's business while at the same time, Charlotte, who still had a tremendously good time, had to move more cautiously. The best example was the slide. The steps were great and designed in such a way to be very easily navigated by everyone but the slides themselves were a different story. They had a handle at the top so children could grab it, swing under, and drop down the slide really fast. I saw several kids do this including the very young ones I mentioned before. Then as Charlotte got up to the top, it was a challenge just to sit down and get her to push herself over the edge.
I had gotten so used to the way she is, and have been so impressed by/proud of how far she has come, that I lost sight of how far there is to go. What's funny (odd) is that it didn't make me sad or feel sorry for myself or anyone else. Just kind of blew my mind in the way realizing the surreal nature of our lives tends to do. It also made me re-determined (real word) to help her improve physically as much as I can. As I've said, she's come so far already, I can't imagine she can't come that far again.
That's my mushy diatribe for the day. Get away from the computer and go enjoy the sunshine!
Well here I am at Romp n' Roll....(get ready for some FUN???) [Yeah, that's a little in-joke for all you die-hards out there!]
It has been a very good weekend after a very stressful week. Saturday was just an amazing series of events and everything worked out well. Roger already filled you in on the major details. I am very appreciative to Anne Mattio, Tina Adkins, and everyone else who helped to put the fundraising dinner together as well as everyone that came out to support it (and us).
Now I'm working on "stuff" at Romp n' Roll and trying to tie up a bunch of loose ends before the week begins. I keep jumping all over the place but at least I'm slowly moving forward.
Here are some ways that you (Charlotte's greatest fans) can help this week:
o I am still looking for someone who would like to design a simple poster or display board that we could take to fundraisers and events centered around Charlotte. It doesn't have to be fancy but it would basically have a few pics of Charlotte (we can supply those), a summary of her story, diagnosis, and treatment path, and then a place to display a calendar or list of other upcoming events. I'm thinking maybe something covered in fabric (?) and then we can use velcro to tack stuff up and trade out info. I would also love to use the board to promote great organizations that have already helped us like ASK, Connor's Heroes, Care Connection, etc. Anyway, if you have skills in this area (craftiness, graphic design, etc.) let me know. I did have one person with graphic desing skills offer up her services if someone was willing to help her.
o Register your child for a summer of fun (or birthday party) at Romp n' Roll! Yes, summer registration week is upon us and Roger and I will be busier than usual. A lot of you who follow us on this board are regular customers and we appreciate everything you do for us! One of the best ways you can continue to support us is by supporting our business or spreading the word. (Shameless plug, I know.)
Some other "official" fundraisers coming up towards the end of the week:
5/3: Qdoba Burrito Eating Contest at Willow Lawn. Register to enter the contest OR come out and EAT that night. Funds raised go towards Charlotte's health care expenses.
5/3: Need a bathing suit? Everything But Water at Short Pump Town Center will be donating 10-15% of proceeds from sales from 4-7 PM towards Charlotte. Go buy your bathing suit and then come to Qdoba!!
5/6: Glen Allen Golf (on US1 between Ashland and VCC) will be hosting an evening for Charlotte from 7-10 PM. Batting cages, mini golf, driving range...all with a portion of sales going back to help Charlotte. I think there will also be a longest drive contest and a closest to the pin contest.
So that's enough for now. I've got to get back to work and then go home.Thanks to everyone for your continued support and driving energy. You are really helping Roger and I get through this (and Charlotte too!!).
We are almost to round 3 which means that we will hopefully be near the halfway point of this marathon.
Happy day!Rachel
Thursday, April 16, 2009
Charlotte is Back in the Hospital
Crap...crap...crappity crap crap...
We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.
She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.
No word yet as to how long we'll be in this time. We'll let you know.
In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.
Gotta run and get ready for Romp n' roll.
Rachel
Big wheels keep on turnin'....
Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!
Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE
If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.
About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.
On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at rreynolds@rompnroll.com
I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...
Rachel
So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.
Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.
She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.
We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.
She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.
Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.
Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.
On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.
She has eaten a good bit, slept a little and is now in a very good mood. That's good.
Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:
http://www.youtube.com/watch?v=wsLqKAvKiQM
Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.
Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.
So off I go to entertain the princess.
We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.
She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.
No word yet as to how long we'll be in this time. We'll let you know.
In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.
Gotta run and get ready for Romp n' roll.
Rachel
Big wheels keep on turnin'....
Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!
Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE
If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.
About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.
On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at rreynolds@rompnroll.com
I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...
Rachel
So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.
Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.
She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.
We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.
She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.
Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.
Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.
On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.
She has eaten a good bit, slept a little and is now in a very good mood. That's good.
Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:
http://www.youtube.com/watch?v=wsLqKAvKiQM
Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.
Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.
So off I go to entertain the princess.
Friday, March 27, 2009
March 27th, Dad's Birthday
OK, so I'm doomed to lose at least one post per week. Let's try it again.
It's March 27th. Dad's Birthday. Happy Birthday! CJ has a little something coming to you in the mail.
I was saying that every good day that Charlotte has is such a gift. I have really come to appreciate every day as it comes especially knowing what's coming up next week.
Today she took a couple walks with the grandparents before the rain moved in and then ran up and down the hallway at Uncle Koldey's house like a wild child.
In a great example of just what we're willing to do for our little princess, at dinner tonight, Charlotte was shoveling in dinner and came up to the broccoli and cheddar on her plate. She wanted to eat the broccoli but not the cheese. So Gramps gathered up all the broccoli, rinsed it off and delivered it back for her to eat, which she did. And not only did he rinse off the broccoli, he did it twice.
For those who were wondering, the Youtube videos of the Uptown Vocal Jazz Quartet are back up and now all 6 are there. Here's the link to the search page:
http://www.youtube.com/results?search_type=&search_query=uptown+vocal+jazz&aq=f
Please remember Megan Blake as you send out the positive vibes. She had her second round of chemo this week. Katie came to RNR and was her usual adorable self.
http://www.caringbridge.org/visit/meganblake
Off to West Virginia tomorrow for a date with Southern Horizon. Taking the new guitar. Thanks Aunt B and Uncle Not-So-Hairy.
Gramps is already doing yard work so for those wanting to help with that, you'd better get over here and tie him down or there won't be anything left to do. Good thing it's raining. :-)
It's March 27th. Dad's Birthday. Happy Birthday! CJ has a little something coming to you in the mail.
I was saying that every good day that Charlotte has is such a gift. I have really come to appreciate every day as it comes especially knowing what's coming up next week.
Today she took a couple walks with the grandparents before the rain moved in and then ran up and down the hallway at Uncle Koldey's house like a wild child.
In a great example of just what we're willing to do for our little princess, at dinner tonight, Charlotte was shoveling in dinner and came up to the broccoli and cheddar on her plate. She wanted to eat the broccoli but not the cheese. So Gramps gathered up all the broccoli, rinsed it off and delivered it back for her to eat, which she did. And not only did he rinse off the broccoli, he did it twice.
For those who were wondering, the Youtube videos of the Uptown Vocal Jazz Quartet are back up and now all 6 are there. Here's the link to the search page:
http://www.youtube.com/results?search_type=&search_query=uptown+vocal+jazz&aq=f
Please remember Megan Blake as you send out the positive vibes. She had her second round of chemo this week. Katie came to RNR and was her usual adorable self.
http://www.caringbridge.org/visit/meganblake
Off to West Virginia tomorrow for a date with Southern Horizon. Taking the new guitar. Thanks Aunt B and Uncle Not-So-Hairy.
Gramps is already doing yard work so for those wanting to help with that, you'd better get over here and tie him down or there won't be anything left to do. Good thing it's raining. :-)
Thursday, March 19, 2009
We Have Poop!
7:43 AM
Really not much to report...
Charlotte slept fitfully through the night. I didn't sleep much just because these chairs are so gosh-darn uncomfortable. She spiked another temp but it came down pretty easily again. I keep rubbing her belly and she falls back to sleep for periods of time.
She did ask for and drink some chocolate milk last night and she kept it down so they are going to give her more of the Lactalose in about an hour. We will see how that goes. We also took a few walks last night (at her request..yay!).
The peds unit is probably about the quietest I have ever seen it. You can tell that RSV/Flu season is about over. I think there were only 3 kids (including Charlotte) on 7 East last night and Charlotte was our nurse's only patient. I am sure the nurses enjoy days/nights like these as they don't come around too often.
Not much else to say...hoping for a poopy day.
Rachel
9:26 AM
GOOD NEWS: We have poop! It was a small quantity but this is definite progress.
Bad News: She is officially losing her hair. I noticed some hair missing around her scar area and found lots of hair on her pillow. It's pretty much coming out in clumps. A week to the day since the Vincristine so not too surprising.
We still have more poop to go to get her "cleaned out" so keep up the poopie prayers!!
Rachel
12:43 PM
The Poopie Prayers May Cease and Desist!
We now have had not only 2 poopie diapers but an explosion (to say the least) of bodily fluids and I will spare the details except to say that it all came out at once from both ends.
After a complete bed change, we are back in bed and relatively happier. Still some abdominal/back pain.
Word on the street is that we can cease and desist with the laxatives but her blood counts are very low so that is the next thing we need to battle. Antibiotics will continue and she should get some more blood soon. Can't really go home until she can keep her fever down, bring up her blood counts, and keep some food down.
Met with the nutritionist and they are looking for foods that we can get her to eat. They may also look at an appetite stimulant but that doesn't always work. We talked about milkshakes and when I mentioned "maybe you can add some extra calories into it" Charlotte said, "No Calories, mommy!". (She thinks the "calories" are a kind of medicine that would go in the shake!) Smart girl knows we sneak medicine into her food and milk sometimes. Anyway, we promised her a chocolate milk shake with "no calories" (wouldn't we all like that!)
We did get a bit of fresh air on the deck today and she picked a flower that she said she wanted to save "for Granny and Gramps". She is getting very excited about their arrival next week (as are we!)
Must go attend to the princess.
Rachel
9:36 PM
The rest of the day was pretty rough. Her belly pain/back pain comes in fits and spurts. The bowel stuff keeps "moving" although it is more of a liquid consistency (sorry if that's too gross)...
In a good bit of news, she is eating a little bit again. She's had some of the milkshake, some water, a few saltine crackers, and about 1/2 cup of popcorn. And nothing has come "back" yet.
Her counts were still very low and she had a blood transfusion for about 4 hours (I think about 30 ml of blood). They also have her on Lasix (a diuretic) because her BP has been abnormally high all day. Could be due to excess fluid. The body temp has stayed down around normal, though.
The hair has been "shedding" all day. It also got very matted in the back and in true Charlotte fashion, she has not let me comb it. She was complaining about it saying "Mom, there's a bow in my hair. Take it out." When I told her that it was her own hair all tangled up she told me to get rid of it. Long story short, at her request, I have trimmed some of her hair and what is left will be gone shortly so next time you see our dear Charlotte, she will probably either be wearing a hat or definitely look different.
I think I am more upset about this newest part than she is. She just seems annoyed at finding hair everywhere. It's sad to see all those beautiful curls go away. I know that her hair will come back eventually and that it will be "something new" when it does. It's just another part of her that has to change because of this disease and that's what stinks. At least those beautiful big brown eyes aren't going anywhere. Monica told her today about how some birds use hair to build their nests and told her how she could take some of her hair and put it in the backyard for the birds. I asked her if she wanted to do that and she said yes. So we will be saving as much hair as we can and taking it to our backyard "for the birds" (or the squirrels as the case may be in our neighborhood).
We will see what tomorrow brings. I'm hoping for a Saturday homecoming...
A big thanks to my darling husband for holding down the RnR fort today. I know he had a long day. Thanks to Miguel as well for his carpentry skills!!
Rachel
Really not much to report...
Charlotte slept fitfully through the night. I didn't sleep much just because these chairs are so gosh-darn uncomfortable. She spiked another temp but it came down pretty easily again. I keep rubbing her belly and she falls back to sleep for periods of time.
She did ask for and drink some chocolate milk last night and she kept it down so they are going to give her more of the Lactalose in about an hour. We will see how that goes. We also took a few walks last night (at her request..yay!).
The peds unit is probably about the quietest I have ever seen it. You can tell that RSV/Flu season is about over. I think there were only 3 kids (including Charlotte) on 7 East last night and Charlotte was our nurse's only patient. I am sure the nurses enjoy days/nights like these as they don't come around too often.
Not much else to say...hoping for a poopy day.
Rachel
9:26 AM
GOOD NEWS: We have poop! It was a small quantity but this is definite progress.
Bad News: She is officially losing her hair. I noticed some hair missing around her scar area and found lots of hair on her pillow. It's pretty much coming out in clumps. A week to the day since the Vincristine so not too surprising.
We still have more poop to go to get her "cleaned out" so keep up the poopie prayers!!
Rachel
12:43 PM
The Poopie Prayers May Cease and Desist!
We now have had not only 2 poopie diapers but an explosion (to say the least) of bodily fluids and I will spare the details except to say that it all came out at once from both ends.
After a complete bed change, we are back in bed and relatively happier. Still some abdominal/back pain.
Word on the street is that we can cease and desist with the laxatives but her blood counts are very low so that is the next thing we need to battle. Antibiotics will continue and she should get some more blood soon. Can't really go home until she can keep her fever down, bring up her blood counts, and keep some food down.
Met with the nutritionist and they are looking for foods that we can get her to eat. They may also look at an appetite stimulant but that doesn't always work. We talked about milkshakes and when I mentioned "maybe you can add some extra calories into it" Charlotte said, "No Calories, mommy!". (She thinks the "calories" are a kind of medicine that would go in the shake!) Smart girl knows we sneak medicine into her food and milk sometimes. Anyway, we promised her a chocolate milk shake with "no calories" (wouldn't we all like that!)
We did get a bit of fresh air on the deck today and she picked a flower that she said she wanted to save "for Granny and Gramps". She is getting very excited about their arrival next week (as are we!)
Must go attend to the princess.
Rachel
9:36 PM
The rest of the day was pretty rough. Her belly pain/back pain comes in fits and spurts. The bowel stuff keeps "moving" although it is more of a liquid consistency (sorry if that's too gross)...
In a good bit of news, she is eating a little bit again. She's had some of the milkshake, some water, a few saltine crackers, and about 1/2 cup of popcorn. And nothing has come "back" yet.
Her counts were still very low and she had a blood transfusion for about 4 hours (I think about 30 ml of blood). They also have her on Lasix (a diuretic) because her BP has been abnormally high all day. Could be due to excess fluid. The body temp has stayed down around normal, though.
The hair has been "shedding" all day. It also got very matted in the back and in true Charlotte fashion, she has not let me comb it. She was complaining about it saying "Mom, there's a bow in my hair. Take it out." When I told her that it was her own hair all tangled up she told me to get rid of it. Long story short, at her request, I have trimmed some of her hair and what is left will be gone shortly so next time you see our dear Charlotte, she will probably either be wearing a hat or definitely look different.
I think I am more upset about this newest part than she is. She just seems annoyed at finding hair everywhere. It's sad to see all those beautiful curls go away. I know that her hair will come back eventually and that it will be "something new" when it does. It's just another part of her that has to change because of this disease and that's what stinks. At least those beautiful big brown eyes aren't going anywhere. Monica told her today about how some birds use hair to build their nests and told her how she could take some of her hair and put it in the backyard for the birds. I asked her if she wanted to do that and she said yes. So we will be saving as much hair as we can and taking it to our backyard "for the birds" (or the squirrels as the case may be in our neighborhood).
We will see what tomorrow brings. I'm hoping for a Saturday homecoming...
A big thanks to my darling husband for holding down the RnR fort today. I know he had a long day. Thanks to Miguel as well for his carpentry skills!!
Rachel
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