A moment to breath between things.
Charlotte is hanging in there. She's definately starting to show signs of chemo side effects. Less energy, dark splotches under the eyes, etc... You wouldn't have known it by looking at the pics Deb took of her last night, though! As soon as they get all uploaded and to us, we'll share a few or you can go to Facebook and see them on my, Rachel's, or Deb Mead Harper's site.
Aunt Phyllis is back home and Granny and Gramps got here safe and sound yesterday.
Next week starts the next level o' crap. CJ finishes Accutane and starts on a new, far more toxic, drug. We have to mix it into applesauce or something but we have to wear double gloves and masks, prepare it in a room far away from food, have no air movement, click our heels three times and say, "Peace in our time" over and over again.
Rachel took CJ into the clinic this morning and it seemed to go well enough. Qdoba and Costco were also on the agenda. They saw her "other boyfriend" Cole at Qdoba which was a nice bonus.
Enjoying it while we can. The sequestering begins soon. Yesterday, she was saying something from the back of the car that I couldn't understand and she wouldn't say it louder even though I asked her three times. Finally I turned off the air and radio and heard her say, "Daddy, I don't like being alone." Where she got that or from where it came, I have no idea but I tried to reassure her several times that someone will always be with her. Could be time to have her sit down with Dr. Matt. Maybe it's the chemo talking. Not sure.
Don't forget the Bazaar tomorrow at St. Anne's Catholic Church in Ashland 10am-2pm.
Enjoy the heat!
Update:
If I were to describe the last few days with Charlotte in two words, I would say "low key". The good news is she seems to be weathering the current chemo regimen fairly well. No nausea, no vomiting, we FINALLY had a poop today (hooray for poop) but she's definitely been more tired and more likely to want to just "chill out". And that's OK!
We had a photo shoot last night with Deb Harper. She's a romp n' roll mom who also takes fabulous pictures. Some posts ago, we announced that she is doing "Pictures for Charlotte" where she will do a photo shoot with your family, edit the pictures, and give them to you on a CD in exchange for a donation in Charlotte's name. She has already booked 16 families (!!!) and last night it was our turn to mug for the camera. She has posted some of the pics on Facebook (they are awesome!!).
On a photography note, a Star Wars enthusiast group called the 501st Legion is going to be taking pictures (in costume, of course) at the next Rompy's Summer Concert Series. For a suggested donation of $5, you can get your picture taken with Darth Vader, storm troopers, or a whole host of characters from the Star Wars Brigade. Big thanks to Jim Woods, RMC soccer coach and RNR customer, for organizing this on Charlotte's behalf.
On a more clinical note:
Yesterday's and today's clinic visits both went pretty well. It was a busy day in the fishbowl but they still got us out of there by 11. We saw Reese and her mom the last two days. Sherry and I got to commisserate (sp?) a bit about the draining treatment regimens. Draining on our kids as well as us. We are advocating for some "adult life" services in addition to the fabulous child life services available at the hospital. I mean, why can't we get a little Tiki Bar put in the clinic? While our kids are getting their infusions, we can get ours...
But I digress...
After the hospital, we went to Qdoba for lunch and had a very chance meeting with Charlotte's friend Cole. He goes to Charlotte's preschool and they just happened to be getting lunch at the same time. They seemed to have a good time seeing one another and talking a bit. From there, it was a few more errands and now we are home. I'm quite exhausted and need a nap (or more caffeine?) and Charlotte seems to be keeping herself busy.
We found out that the Accutane will stop tonight. No chemo over the weekend and then on Monday she will need to go in for blood draws and THEN (assuming her counts are good) she will get the two meds (one oral and one IV) so it could be a L-O-N-G clinic day on Monday. At least they warned us this time.
Roger is working a MARATHON day at RNR with 4 classes in the AM, a birthday party, and THEN Kid's Night Out till 8:30. What a blast! I'm sure he will come home tired. My turn for the marathon day tomorrow.
Big reminder about the Home Based Business Bazaar at St. Ann's church from 10 AM-2 PM tomorrow. Big thanks to Jackie Plank for organizing this and all the vendors for putting it together. This is a great time to start your Christmas shopping or find the perfect birthday gifts for everyone on your list.
Gotta go seek out some mid-afternoon caffeine.
Update:
Ok, so if you didn't notice, Roger and I posted separate but similar journal entries only minutes apart. Yes, our strange synchronized brains work like that somehow...enjoy the weekend!
Rachel
Showing posts with label Qdoba Mexican Grill. Show all posts
Showing posts with label Qdoba Mexican Grill. Show all posts
Friday, June 26, 2009
Friday, June 5, 2009
Things are Going Very Well at Home
First off, Sorry about the lack of update. We are having trouble getting on to Caringbridge from home. Not sure why when the rest of our internet service at home works fine. Anyone have an insight into why that may be?
Other than that, things are going very well at home. Charlotte was extremely mellow yesterday and we kept an eye on her just to make sure she wasn't getting sick or something but she seemed fine. Her BM last night was very healthy!
As with the second surgery, she's now going through a bit of an "emotional" phase. Devon came by and spent some great quality time with CJ, snuggling with her, reading to her, and watching videos but she had a couple meltdowns when things didn't go exactly the way she wanted them. Like when the Sesame Street Halloween video ended. It took a moment to figure out exactly why she was bawling but we did and it's par for the course of recovery.
We went to Qdoba to get the official check for the burrito eating contest from Lisa. Everything added together, we raised $975! Thanks everyone who helped. CJ has such a following, the Army recruiter from across the parking lot actually came over just to see her when he found out she was there. A couple other people did as well.
We're very excited about the upcoming events at Romp n' Roll and in the surrounding community:
Our free week of preview classes has been received with a great deal of excitement and there are not many spaces left. I think the most vancies are with the babies class but we booked several of those yesterday.
The Ashland Strawberry Faire is looking to be a very nice change from this rainy weather. Forecasts call for partly cloudy skies with a high of around 81. Couldn't ask for a better outlook. We'll be there with face painting, crafts, and the bubble gun!
Rompy's Summer Concert Series kicks off on Thursday the 11th with Clay Mottley and the Taters. Food donations for the Central Virginia Food Bank will be accepted as well as donations for Charlotte's fund. There will also be a bloodmobile on site starting at 3pm.
Gotta go get ready for "Big Friday!"
Rog
As a followup to the last post:
There's now a sign-up sheet at Romp n' Roll for the Bloodmobile. Appointments start at 3:00pm and there's an average of 6 slots for every hour which equals 26 pints of badly needed blood. If you're available and eligible to give blood, please call the store to sign up. Think of it this way, after this, you get a 3-month break from VA Blood Services calling you every day to come in and give blood! :-) You're giving in CJ's name but not for her directly as she has mercifully needed very little. I'm sure, however, that that will change when we move into the next phase of treatment, whatever that means.
On another tangent...We're gonna pass 100,000 hits today!!! How exciting! You guys are amazing. Wish I knew how to save and print the page when it goes over.
I would like to paste an email I received from the father of a child who passed away from a brain tumor. They have a very active foundation and I would engourage you to learn more about what they do. I saw them featured on the Golf Channel while Charlotte was recovering from the last surgery.
"Reynolds family,
Thank you so much for writing on Payton’s blog and it is strange how these things happen to bring people together. Flipping through the channels late at night is something I know all to well about.
It sounds like your daughter is getting great care. We did the same as far as getting several opinions and ended up at Duke Hospital at the Preston Robert Tisch Brain Tumor Center. I was recently there and spoke to Payton’s doctor, Dr. Gururangan and he said they are working on a vaccine that may have helped Payton. I could introduce you to him if you like to see if your hospital is collaborating with Duke on any of their studies. M.D. Anderson is another top notch hospital. I have been invited to meet the president and tour their hospital soon and can’t wait.
Payton was first diagnosed with a PNET as well and after two weeks of collaboration between 5 different hospitals they determined it was a Medulloepithelioma tumor.
I know how you feel and what your family is going through so stay strong. That is an easy thing to say, but much harder to do. I don’t have any magic words that can make you feel better or to help you get through this. There just isn’t any. People always say I couldn’t do what you both did, I wouldn’t of made it through, I can’t believe how strong you are….many things along those lines…well you just do it. As you know, you just get through each day and take it on. There is no other choice. I am sure you have said to your daughter that you would take this cancer if you could. I said it every day. CANCER SUCKS. But you guys keep fighting because I am sure your daughter will.
Sorry if I didn’t make sense in this email or offended you in anyway. As much as I do it, it is still hard for me as someone who has lived through the horrors and seen the things you have seen to communicate with folks living through it now. Hang in there and let me know if I can help.
www.paytonwright.org"
I especially like the fact that many of the things in Mr. Wright's email are things we've found ourselves saying like "CANCER SUCKS!" I understand the last golf tournament they had raised over $70,000!
The ball is rolling again to get "CJ's Thumbs Up! Foundation" up and running. We hope it will be a "fun-raising" organization that will privide financial (and sometimes personell) assistance to individuals and other organizations that already do the things we were thinking of doing. We'll let you know when the tires hit the road.
So here's to 100,000 hits, the Strawberry Faire, and the Concert Series!
Thanks for everything past, present, and future!
Roger
Other than that, things are going very well at home. Charlotte was extremely mellow yesterday and we kept an eye on her just to make sure she wasn't getting sick or something but she seemed fine. Her BM last night was very healthy!
As with the second surgery, she's now going through a bit of an "emotional" phase. Devon came by and spent some great quality time with CJ, snuggling with her, reading to her, and watching videos but she had a couple meltdowns when things didn't go exactly the way she wanted them. Like when the Sesame Street Halloween video ended. It took a moment to figure out exactly why she was bawling but we did and it's par for the course of recovery.
We went to Qdoba to get the official check for the burrito eating contest from Lisa. Everything added together, we raised $975! Thanks everyone who helped. CJ has such a following, the Army recruiter from across the parking lot actually came over just to see her when he found out she was there. A couple other people did as well.
We're very excited about the upcoming events at Romp n' Roll and in the surrounding community:
Our free week of preview classes has been received with a great deal of excitement and there are not many spaces left. I think the most vancies are with the babies class but we booked several of those yesterday.
The Ashland Strawberry Faire is looking to be a very nice change from this rainy weather. Forecasts call for partly cloudy skies with a high of around 81. Couldn't ask for a better outlook. We'll be there with face painting, crafts, and the bubble gun!
Rompy's Summer Concert Series kicks off on Thursday the 11th with Clay Mottley and the Taters. Food donations for the Central Virginia Food Bank will be accepted as well as donations for Charlotte's fund. There will also be a bloodmobile on site starting at 3pm.
Gotta go get ready for "Big Friday!"
Rog
As a followup to the last post:
There's now a sign-up sheet at Romp n' Roll for the Bloodmobile. Appointments start at 3:00pm and there's an average of 6 slots for every hour which equals 26 pints of badly needed blood. If you're available and eligible to give blood, please call the store to sign up. Think of it this way, after this, you get a 3-month break from VA Blood Services calling you every day to come in and give blood! :-) You're giving in CJ's name but not for her directly as she has mercifully needed very little. I'm sure, however, that that will change when we move into the next phase of treatment, whatever that means.
On another tangent...We're gonna pass 100,000 hits today!!! How exciting! You guys are amazing. Wish I knew how to save and print the page when it goes over.
I would like to paste an email I received from the father of a child who passed away from a brain tumor. They have a very active foundation and I would engourage you to learn more about what they do. I saw them featured on the Golf Channel while Charlotte was recovering from the last surgery.
"Reynolds family,
Thank you so much for writing on Payton’s blog and it is strange how these things happen to bring people together. Flipping through the channels late at night is something I know all to well about.
It sounds like your daughter is getting great care. We did the same as far as getting several opinions and ended up at Duke Hospital at the Preston Robert Tisch Brain Tumor Center. I was recently there and spoke to Payton’s doctor, Dr. Gururangan and he said they are working on a vaccine that may have helped Payton. I could introduce you to him if you like to see if your hospital is collaborating with Duke on any of their studies. M.D. Anderson is another top notch hospital. I have been invited to meet the president and tour their hospital soon and can’t wait.
Payton was first diagnosed with a PNET as well and after two weeks of collaboration between 5 different hospitals they determined it was a Medulloepithelioma tumor.
I know how you feel and what your family is going through so stay strong. That is an easy thing to say, but much harder to do. I don’t have any magic words that can make you feel better or to help you get through this. There just isn’t any. People always say I couldn’t do what you both did, I wouldn’t of made it through, I can’t believe how strong you are….many things along those lines…well you just do it. As you know, you just get through each day and take it on. There is no other choice. I am sure you have said to your daughter that you would take this cancer if you could. I said it every day. CANCER SUCKS. But you guys keep fighting because I am sure your daughter will.
Sorry if I didn’t make sense in this email or offended you in anyway. As much as I do it, it is still hard for me as someone who has lived through the horrors and seen the things you have seen to communicate with folks living through it now. Hang in there and let me know if I can help.
www.paytonwright.org"
I especially like the fact that many of the things in Mr. Wright's email are things we've found ourselves saying like "CANCER SUCKS!" I understand the last golf tournament they had raised over $70,000!
The ball is rolling again to get "CJ's Thumbs Up! Foundation" up and running. We hope it will be a "fun-raising" organization that will privide financial (and sometimes personell) assistance to individuals and other organizations that already do the things we were thinking of doing. We'll let you know when the tires hit the road.
So here's to 100,000 hits, the Strawberry Faire, and the Concert Series!
Thanks for everything past, present, and future!
Roger
Wednesday, June 3, 2009
We Are HOME!
Charlotte had a great day yesterday. She was moved off the PICU to the regular peds unit (7 East) and spent most of the day entertaining herself and everyone else. By the time I got there in the mid afternoon, she was singing and just looking her adorable little self.
She has had two good sized poops in 24 hours (yay) so we are all pretty happy with the way things are moving (so to speak). She is also eating and drinking pretty well. We took her for a few walks and she was very motivated to go. In fact, we had to almost run to keep up with the IV pull coming behind her! She visited one of the playrooms to do some watercolor painting and we also had some visits from the hospital preschool teacher.
If all goes well, she should have a CT scan again sometime today (just to be sure everything is fine) and then she will go HOME. Hooray.
We still don't have official word from Dr. Khan yet about the next steps but I spoke with our nurse practitioner yesterday and she is in communication with him about where we go from here. Hopefully we should have some answers soon. I am guessing radiation will be the next step so it's just a matter of picking a date and starting talks with the radiation oncologist.
Gotta run and get ready for a busy day!
Rachel
Update: We are HOME!
She had a good night and we FINALLY got a CT scan at about 3 PM. Dr. Tye had basically given the clearance to go home before then but they had to do the CT just to be sure.
In the meantime, she had a productive afternoon that included a visit from Ms. Nodra, the Pre-K teacher on the unit. Ms. Nodra has had a chance to really get to know Charotte over the past few months so she brought some great activities. In about 45 minutes, Charlotte worked on letter sounds, letter names, puzzles, counting, writing (numbers and letters) and a few other great skills. It was good exercise for her brain.
We came home to a welcome home dinner over at Granny Dot's and now it's storming like crazy (yay for rain). Oh, she also called Gramps in Florida to wish him a Happy Birthday!
Grandpa and Grandma Bonita leave tomorrow to go back to TN. MUCH MUCH MUCH thanks to them for all the help this past week. We couldn't have done everything we've done without them.
We will go by Qdoba tomorrow to pick up our fundraising check from Lisa. No word on the final total but we are excited. Speaking of which, they are doing ANOTHER fundraiser at the Willow Lawn store tomorrow for an organization called Noah's Children. There is no burrito contest but it is another "portion of the proceeds for every meal goes to the organization" deal. If you are in the Willow Lawn area tomorrow, please come out to support them. They are a great restaurant with good food and they do a lot of good work for the community. I think the fundraiser is basically all day.
My good friend (make that GREAT friend) Amy will be flying in from Ohio on Friday to help us for a few days. Then Aunt Phyllis will come for a turn. It will be a busy few days with the Strawberry Faire on Saturday and a Southern Horizon gig for Roger. Not to mention our normal busy stuff. Hoping to make it to the church picnic Sunday too. We shall see!!
It will be nice to be home for a bit. I hope we hear from Oncology in the next few days with some answers.
Signing off...
Rachel
She has had two good sized poops in 24 hours (yay) so we are all pretty happy with the way things are moving (so to speak). She is also eating and drinking pretty well. We took her for a few walks and she was very motivated to go. In fact, we had to almost run to keep up with the IV pull coming behind her! She visited one of the playrooms to do some watercolor painting and we also had some visits from the hospital preschool teacher.
If all goes well, she should have a CT scan again sometime today (just to be sure everything is fine) and then she will go HOME. Hooray.
We still don't have official word from Dr. Khan yet about the next steps but I spoke with our nurse practitioner yesterday and she is in communication with him about where we go from here. Hopefully we should have some answers soon. I am guessing radiation will be the next step so it's just a matter of picking a date and starting talks with the radiation oncologist.
Gotta run and get ready for a busy day!
Rachel
Update: We are HOME!
She had a good night and we FINALLY got a CT scan at about 3 PM. Dr. Tye had basically given the clearance to go home before then but they had to do the CT just to be sure.
In the meantime, she had a productive afternoon that included a visit from Ms. Nodra, the Pre-K teacher on the unit. Ms. Nodra has had a chance to really get to know Charotte over the past few months so she brought some great activities. In about 45 minutes, Charlotte worked on letter sounds, letter names, puzzles, counting, writing (numbers and letters) and a few other great skills. It was good exercise for her brain.
We came home to a welcome home dinner over at Granny Dot's and now it's storming like crazy (yay for rain). Oh, she also called Gramps in Florida to wish him a Happy Birthday!
Grandpa and Grandma Bonita leave tomorrow to go back to TN. MUCH MUCH MUCH thanks to them for all the help this past week. We couldn't have done everything we've done without them.
We will go by Qdoba tomorrow to pick up our fundraising check from Lisa. No word on the final total but we are excited. Speaking of which, they are doing ANOTHER fundraiser at the Willow Lawn store tomorrow for an organization called Noah's Children. There is no burrito contest but it is another "portion of the proceeds for every meal goes to the organization" deal. If you are in the Willow Lawn area tomorrow, please come out to support them. They are a great restaurant with good food and they do a lot of good work for the community. I think the fundraiser is basically all day.
My good friend (make that GREAT friend) Amy will be flying in from Ohio on Friday to help us for a few days. Then Aunt Phyllis will come for a turn. It will be a busy few days with the Strawberry Faire on Saturday and a Southern Horizon gig for Roger. Not to mention our normal busy stuff. Hoping to make it to the church picnic Sunday too. We shall see!!
It will be nice to be home for a bit. I hope we hear from Oncology in the next few days with some answers.
Signing off...
Rachel
Wednesday, May 20, 2009
Announcements
Some announcements for the week:
0. There was a green old navy jacket (adult size xs) left at the Head Shaving Party @ Romp n' Roll in April. If it belongs to you, please come by or call to claim it. It's really cute and I would take it but there's NO WAY I'm an XS :-)
1. Mini Golf/Batting Cages/Driving Range TONIGHT 7-10 PM at Glen Allen Golf on US1 to benefit Charlotte.
2. The Five Below event @ VCC seemed to be a success and Charlotte's story has really touched on the people there SO they are repeating the event for the next TWO weekends. Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes (sp?).
3. Don't forget about the Brain Tumor Awareness Benefit Concert with Susan Greenbaum and Cheryl Fare at Ashland Coffee and Tea Saturday (5/23) from 3-6 PM. The event itself does not benefit Charlotte directly but it is a great cause with great music AND there will be a 50/50 raffle for Charlotte as well. Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it.
4. A shout-out to Christy, Wendy, and Torrie for helping Roger with the FACES event at Virginia Crossings tonight.
5. A HUGE shout-out to Jackie Plank for continuing the fundraising efforts.
6. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors (Pampered Chef, Arbonne, Longaberger Baskets, etc.) selling their wares and donating a portion of the proceeds to Charlotte. Start your Christmas shopping early! Also, I think a Silent Auction is in the works.
With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" (they will cover the visit but not the tumor evaluation since that is considered experimental). We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates. Given that we do not know right now how many stem cell transplants/rounds of high dose chemo she will need and/or whether this will go on past this calendar year (since our deductible is for the calendar year), this will probably increase our out-of-pocket medical costs to anywhere between $40-100K. We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us...
That is all I have to report. I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! Whew!
Rachel
First off and VERY IMPORTANT, the little thermometer to the right isn't our idea. It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well. Might be the last one I send if they keep that kind of crap up
Be that as it may, today was a HUGE day! First off, I woke up, completely alert, at 4AM this morning. No idea why.
Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston ("Houston, Texas?!?")
This next event illustrated Cerisa's post brilliantly: While headed home, I asked Charlotte where she wanted to have lunch and she said the ever wonderful, "Chick-fil-a." When I said, OK, we're going to Chick-fil-a, she immediately said, "People eat there seven times a day!" If you don't know to what that refers, immediately open a new browser tab/window and go here:
http://www.youtube.com/watch?v=NsJHqstPuNo
No, really. Go do that now...
Hmmm dee dum dummm
Great, eh?
OK so we get to CFA and we meet Mommy there. We had a great lunch, CJ had ice cream with her lunch, and Mommy and I switched cars and Charlotte.
I then went to VA Crossings Resort to set up the Romp n' Roll stuff for the FACES of Virginia meeting. I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions.
I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. I figured that's OK since I'll have my star volunteers, Torrie (Too Tall Torrie) Heathcoat and Christy Yeadon MAN Am I glad they were there! Couldn't have done this without them. Thanks, ladies!
After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all.
So we made a lot of FACES parents very happy to be able to have a nice, relatively quiet dinner. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is. Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's why I dig this FACES of Virginia Families organization so much. That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Heck! Boss woman, Cate Neubanks is even going to yoga with us on June 6th.
I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser! I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can.
We still don't have final numbers from the burrito eating contest at Qdoba. Still working on it.
Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase.
Thanks for all your well wishes for the safe trip. See you in Houston.
Rog
p.s. We got the ReeseStrong doll and will be taking it to Houston.
0. There was a green old navy jacket (adult size xs) left at the Head Shaving Party @ Romp n' Roll in April. If it belongs to you, please come by or call to claim it. It's really cute and I would take it but there's NO WAY I'm an XS :-)
1. Mini Golf/Batting Cages/Driving Range TONIGHT 7-10 PM at Glen Allen Golf on US1 to benefit Charlotte.
2. The Five Below event @ VCC seemed to be a success and Charlotte's story has really touched on the people there SO they are repeating the event for the next TWO weekends. Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes (sp?).
3. Don't forget about the Brain Tumor Awareness Benefit Concert with Susan Greenbaum and Cheryl Fare at Ashland Coffee and Tea Saturday (5/23) from 3-6 PM. The event itself does not benefit Charlotte directly but it is a great cause with great music AND there will be a 50/50 raffle for Charlotte as well. Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it.
4. A shout-out to Christy, Wendy, and Torrie for helping Roger with the FACES event at Virginia Crossings tonight.
5. A HUGE shout-out to Jackie Plank for continuing the fundraising efforts.
6. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors (Pampered Chef, Arbonne, Longaberger Baskets, etc.) selling their wares and donating a portion of the proceeds to Charlotte. Start your Christmas shopping early! Also, I think a Silent Auction is in the works.
With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" (they will cover the visit but not the tumor evaluation since that is considered experimental). We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates. Given that we do not know right now how many stem cell transplants/rounds of high dose chemo she will need and/or whether this will go on past this calendar year (since our deductible is for the calendar year), this will probably increase our out-of-pocket medical costs to anywhere between $40-100K. We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us...
That is all I have to report. I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! Whew!
Rachel
First off and VERY IMPORTANT, the little thermometer to the right isn't our idea. It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well. Might be the last one I send if they keep that kind of crap up
Be that as it may, today was a HUGE day! First off, I woke up, completely alert, at 4AM this morning. No idea why.
Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston ("Houston, Texas?!?")
This next event illustrated Cerisa's post brilliantly: While headed home, I asked Charlotte where she wanted to have lunch and she said the ever wonderful, "Chick-fil-a." When I said, OK, we're going to Chick-fil-a, she immediately said, "People eat there seven times a day!" If you don't know to what that refers, immediately open a new browser tab/window and go here:
http://www.youtube.com/watch?v=NsJHqstPuNo
No, really. Go do that now...
Hmmm dee dum dummm
Great, eh?
OK so we get to CFA and we meet Mommy there. We had a great lunch, CJ had ice cream with her lunch, and Mommy and I switched cars and Charlotte.
I then went to VA Crossings Resort to set up the Romp n' Roll stuff for the FACES of Virginia meeting. I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions.
I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. I figured that's OK since I'll have my star volunteers, Torrie (Too Tall Torrie) Heathcoat and Christy Yeadon MAN Am I glad they were there! Couldn't have done this without them. Thanks, ladies!
After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all.
So we made a lot of FACES parents very happy to be able to have a nice, relatively quiet dinner. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is. Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's why I dig this FACES of Virginia Families organization so much. That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Heck! Boss woman, Cate Neubanks is even going to yoga with us on June 6th.
I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser! I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can.
We still don't have final numbers from the burrito eating contest at Qdoba. Still working on it.
Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase.
Thanks for all your well wishes for the safe trip. See you in Houston.
Rog
p.s. We got the ReeseStrong doll and will be taking it to Houston.
Monday, May 4, 2009
An Update
First of all:
For our good friends the Klauers: This Tuesday (tomorrow) is ReeseStrong Day at the Riverbound Cafe in Mechanicsville! A percentage of all proceeds for the day (breakfast, lunch and dinner) will go to the ReeseStrong fund! Come out and eat!
Also: Next Fundraiser at Glen Allen Golf (on US1) from 7 PM-10 PM on Wednesday 5/6. Mini-golf, batting cages, and driving range! Come out for the fun and a portion of the proceeds will go to Charlotte.
Today was a nice day "off" from Romp n' Roll for me. Roger and I did go back to the clinic today to meet with Dr. Khan. We reviewed the scans again and got to talk more about possibilities for the next step(s). We still don't have any solid directions, but we will meet with Dr. Tye (neurosurgery) and Dr. Chung (radiologic oncology) on Friday along with Dr. Khan to discuss options and possible side effects of these different paths.
Meanwhile, Charlotte has had a GREAT day, complete with a much needed POOP (yes, you needed to know that).
Then we had a wonderful surprise visitor! (Pictures to follow). Our good friend Carolyn Peart has an "in" with a certain character named Mary Poppins. Charlotte wrote a letter to Mary Poppins a few weeks ago and sent it up the chimney (watch the movie). In the letter, she asked Mary Poppins to visit her. Well, Mary came for a visit today complete with her magic bag and a full tea set with scones and "tea". We had a lovely time visiting with her. Mom, Granny, and Charlotte all enjoyed her company and it was so much fun. Charlotte was a delight. The best party was putting the jelly on the scone. Then she forgot about the scone entirely and just decided to eat the jelly straight from the bowl with her fingers! Emily Post may have had something to say about it but Mary Poppins thought it was just fine. We sang songs from Mary Poppins' movie ("Let's Go Fly a Kite") as well as some of Charlotte's other favorites (Frosty the Snowman). Charlotte also loved showing Mary Poppins her "new" room and talking about her pets.
After this lovely visit, we ran a few errands with Granny and now she is at home working on a sticker picture.
It seems strange to think about our new directions and timeline. It is very difficult for me to wrap my brain around it until I have some more answers. Until then, we will enjoy our rest at home with no doctor's appointments or therapy appointments till Friday (oh, goodness, what will we do with ourselves????).
I promise to upload the Mary Poppins pictures as soon as Roger brings the camera back!
An Update from Roger
A very good day for Charlotte.
We all slept in and got up around 8. Mommy did some cleaning, daddy, tried to catch up on emails and did a little laundry. Paster Ed from St. James The Less came over for a visit and CJ seem genuinely excited to see him. She actually ran up to him and threw her arms around him. He returned the favor by giving her a squeeky duck.
Rachel eventually went to Romp n' Roll for a Birthday Bash and camp training and I went to Qdoba for the big burrito eating contest but not before stopping off at RNR to get the amazingly beautiful message board made for us by Sarah and Wendy. Thanks ladies!
I got to Qdoba about 3:30 and helped with a few of the last minute finishing touches. There were'nt too many people there and I was kind of expecting a moderately small crowd since there was no one signed up for the burrito eating contest until pretty late in the game. Boy! Was I wrong!
Slowly but surely the place started filling up with friends, RNR customers, and people I didn't know. A group of guys came in asking about the burrito eating contest and I went over to chat. They heard about it via email. Another group of VCU students heard about it at the other Broad St Qdoba, and yet another group of VCU students said they had heard about it on a website that gives dates and locations of eating contests all over.
We ended up with 42 contestants and they had to move them all outside to give them directions becuse it was too loud and crowded inside!
The contest had to be conducted in waves and I was slated to go in the last round. I knew I was sunk after the first round when one guy ate 4 burritos. I did my best but had to steal water from the little girl across the table from me to get everything down smoothly. I only finished 2 burritos but they sure were good!
There was also a table with a spinnig wheel and prizes. $1 a spin. We collected almost $600 from donations and contest entry fees. That doesn't include the 20% of sales we got. I'll report a total amount when we get the final check.
Major thanks to everyone at Qdoba including Lisa and Ibo (sp?) for having us. It was a great event and I am once again amazed by the support you've shown us.
More news:
First of all, a brief Charlotte update...she ate a great dinner and then proceeded to have ANOTHER poop. Then after a little bit of TV watching, she ended up vomiting all over me and herself. We were looking at pictures (of Mary Poppins) on the computer and fortunately we missed the laptop (by inches). Thankfully, granny came over and helped clean up the mess.
She's now cleaned up and resting in bed. She seemed ok so maybe she just overdid it at dinner tonight.
ALSO, for those of you who live in the Richmond area: Many of you have asked how you can help us, especially with the business. HERE is your opportunity: Every year, Richmond Magazine names their Best/Worst of Richmond as voted by their readers. Two years ago, Romp n' Roll was voted best Kid's Gym (last year it wasn't a category) and for the last two years we got 2nd place for Best Place to Hold a Kid's Birthday Party and Best Website. We just learned (as we were sitting in the clinic today and spied a Richmond Magazine) that the contest is going on NOW and entries are due by May 8th!!!
Ballot entries cannot be filled out online. You must buy a Richmond Magazine or go by the Richmond Magazine office to get a ballot. They must be POSTMARKED by May 8th. You also must vote for at least 20 categories for your ballot to be valid. The categories in which Romp n' Roll would be eligible this year are: Best Kid's Gym, Best Parties and Best Kid's Art Classes
Richmond Magazines are sold at Ukrops, Barnes and Noble, and other fine local retailers. Thanks for your help with this! I know we have a fabulous network so this will help us get the word out!!!
Thanks in advance for your help with this.
Rachel
For our good friends the Klauers: This Tuesday (tomorrow) is ReeseStrong Day at the Riverbound Cafe in Mechanicsville! A percentage of all proceeds for the day (breakfast, lunch and dinner) will go to the ReeseStrong fund! Come out and eat!
Also: Next Fundraiser at Glen Allen Golf (on US1) from 7 PM-10 PM on Wednesday 5/6. Mini-golf, batting cages, and driving range! Come out for the fun and a portion of the proceeds will go to Charlotte.
Today was a nice day "off" from Romp n' Roll for me. Roger and I did go back to the clinic today to meet with Dr. Khan. We reviewed the scans again and got to talk more about possibilities for the next step(s). We still don't have any solid directions, but we will meet with Dr. Tye (neurosurgery) and Dr. Chung (radiologic oncology) on Friday along with Dr. Khan to discuss options and possible side effects of these different paths.
Meanwhile, Charlotte has had a GREAT day, complete with a much needed POOP (yes, you needed to know that).
Then we had a wonderful surprise visitor! (Pictures to follow). Our good friend Carolyn Peart has an "in" with a certain character named Mary Poppins. Charlotte wrote a letter to Mary Poppins a few weeks ago and sent it up the chimney (watch the movie). In the letter, she asked Mary Poppins to visit her. Well, Mary came for a visit today complete with her magic bag and a full tea set with scones and "tea". We had a lovely time visiting with her. Mom, Granny, and Charlotte all enjoyed her company and it was so much fun. Charlotte was a delight. The best party was putting the jelly on the scone. Then she forgot about the scone entirely and just decided to eat the jelly straight from the bowl with her fingers! Emily Post may have had something to say about it but Mary Poppins thought it was just fine. We sang songs from Mary Poppins' movie ("Let's Go Fly a Kite") as well as some of Charlotte's other favorites (Frosty the Snowman). Charlotte also loved showing Mary Poppins her "new" room and talking about her pets.
After this lovely visit, we ran a few errands with Granny and now she is at home working on a sticker picture.
It seems strange to think about our new directions and timeline. It is very difficult for me to wrap my brain around it until I have some more answers. Until then, we will enjoy our rest at home with no doctor's appointments or therapy appointments till Friday (oh, goodness, what will we do with ourselves????).
I promise to upload the Mary Poppins pictures as soon as Roger brings the camera back!
An Update from Roger
A very good day for Charlotte.
We all slept in and got up around 8. Mommy did some cleaning, daddy, tried to catch up on emails and did a little laundry. Paster Ed from St. James The Less came over for a visit and CJ seem genuinely excited to see him. She actually ran up to him and threw her arms around him. He returned the favor by giving her a squeeky duck.
Rachel eventually went to Romp n' Roll for a Birthday Bash and camp training and I went to Qdoba for the big burrito eating contest but not before stopping off at RNR to get the amazingly beautiful message board made for us by Sarah and Wendy. Thanks ladies!
I got to Qdoba about 3:30 and helped with a few of the last minute finishing touches. There were'nt too many people there and I was kind of expecting a moderately small crowd since there was no one signed up for the burrito eating contest until pretty late in the game. Boy! Was I wrong!
Slowly but surely the place started filling up with friends, RNR customers, and people I didn't know. A group of guys came in asking about the burrito eating contest and I went over to chat. They heard about it via email. Another group of VCU students heard about it at the other Broad St Qdoba, and yet another group of VCU students said they had heard about it on a website that gives dates and locations of eating contests all over.
We ended up with 42 contestants and they had to move them all outside to give them directions becuse it was too loud and crowded inside!
The contest had to be conducted in waves and I was slated to go in the last round. I knew I was sunk after the first round when one guy ate 4 burritos. I did my best but had to steal water from the little girl across the table from me to get everything down smoothly. I only finished 2 burritos but they sure were good!
There was also a table with a spinnig wheel and prizes. $1 a spin. We collected almost $600 from donations and contest entry fees. That doesn't include the 20% of sales we got. I'll report a total amount when we get the final check.
Major thanks to everyone at Qdoba including Lisa and Ibo (sp?) for having us. It was a great event and I am once again amazed by the support you've shown us.
More news:
First of all, a brief Charlotte update...she ate a great dinner and then proceeded to have ANOTHER poop. Then after a little bit of TV watching, she ended up vomiting all over me and herself. We were looking at pictures (of Mary Poppins) on the computer and fortunately we missed the laptop (by inches). Thankfully, granny came over and helped clean up the mess.
She's now cleaned up and resting in bed. She seemed ok so maybe she just overdid it at dinner tonight.
ALSO, for those of you who live in the Richmond area: Many of you have asked how you can help us, especially with the business. HERE is your opportunity: Every year, Richmond Magazine names their Best/Worst of Richmond as voted by their readers. Two years ago, Romp n' Roll was voted best Kid's Gym (last year it wasn't a category) and for the last two years we got 2nd place for Best Place to Hold a Kid's Birthday Party and Best Website. We just learned (as we were sitting in the clinic today and spied a Richmond Magazine) that the contest is going on NOW and entries are due by May 8th!!!
Ballot entries cannot be filled out online. You must buy a Richmond Magazine or go by the Richmond Magazine office to get a ballot. They must be POSTMARKED by May 8th. You also must vote for at least 20 categories for your ballot to be valid. The categories in which Romp n' Roll would be eligible this year are: Best Kid's Gym, Best Parties and Best Kid's Art Classes
Richmond Magazines are sold at Ukrops, Barnes and Noble, and other fine local retailers. Thanks for your help with this! I know we have a fabulous network so this will help us get the word out!!!
Thanks in advance for your help with this.
Rachel
Tuesday, April 28, 2009
In the Hospital for Chemo
Ok, so I'm running on fumes with about four hours of sleep two nights in a row thanks to allergies and other factors so I will keep this brief but as informative as possible. And then go crash.
Charlotte and Grandpa journeyed to the clinic this morning while Roger and I journeyed to Romp n' Roll activities. I made it to the clinic by about 1 PM and in true form, they were STILL in the clinic (not admitted yet). We got admitted about 3 PM which is actually a record on timing, I think. Not only that, but we arrived at our room on 7East to find everything "prepared". We are in one of the "nicer" single rooms with a good view, a REAL pull out bed for the parent (a rarity outside of the PICU) and Charlotte's bed already prepared with a new Elmo & Zoe pillowcase and Heather's Care Bears waiting to say hi. (Charlotte "borrows" these Care Bear Figurines from Heather every time she comes to the hospital. It has become their little ritual.
I guess being a "frequent flyer" gets you a (hopefully good) reputation that starts to pay off. We got folks watching out for us.
Our nurse (Caroline) has worked with Charlotte a lot before as well so that helped the process too. We got her situated and got everything moving and she officially started chemo (after fluids, pre-chemo meds, etc.) at 9 PM tonight. Again, another record (usually we "start" at about midnight or later on the day we are admitted).
Charlotte spent the afternoon in a very artistic mood. She painted with watercolors, drew pictures, and made sticker collages. Lots of concentration and creativity.
This was also good because she didn't seem too in need of 1:1 attention from mom. Mom didn't have the energy...
Dad came to relieve me at about 9:30 and now I am home.
And signing off....
OH!!! But wait! Before I forget:
Many of you know about the burrito eating contest at Qdoba on Sunday. I know that many of you have expressed an interest in coming out to support us (mainly by eating dinner there). IF you are in any way interested in participating in the burrito eating contest, PLEASE sign up soon. All registration fees (100%) go to Charlotte. You will eat as many burritos as you can in 10 minutes but they're not the typical Qdoba burritos. They take a few ounces out of each of them. The top prize package carries over a $1500 value and there are great runner-up prizes as well. It looks like the competition pool is kind of slight right now so your chances could be really good! Plus, it's for a GREAT cause. Anyway, the store would really like to have an idea of how may competitors to expect. I know some of you have given me "Maybes" so turn those thoughts to YESes and go by the store at Willow Lawn to register by Friday!!!
Thanks for your time...
Rachel
Charlotte and Grandpa journeyed to the clinic this morning while Roger and I journeyed to Romp n' Roll activities. I made it to the clinic by about 1 PM and in true form, they were STILL in the clinic (not admitted yet). We got admitted about 3 PM which is actually a record on timing, I think. Not only that, but we arrived at our room on 7East to find everything "prepared". We are in one of the "nicer" single rooms with a good view, a REAL pull out bed for the parent (a rarity outside of the PICU) and Charlotte's bed already prepared with a new Elmo & Zoe pillowcase and Heather's Care Bears waiting to say hi. (Charlotte "borrows" these Care Bear Figurines from Heather every time she comes to the hospital. It has become their little ritual.
I guess being a "frequent flyer" gets you a (hopefully good) reputation that starts to pay off. We got folks watching out for us.
Our nurse (Caroline) has worked with Charlotte a lot before as well so that helped the process too. We got her situated and got everything moving and she officially started chemo (after fluids, pre-chemo meds, etc.) at 9 PM tonight. Again, another record (usually we "start" at about midnight or later on the day we are admitted).
Charlotte spent the afternoon in a very artistic mood. She painted with watercolors, drew pictures, and made sticker collages. Lots of concentration and creativity.
This was also good because she didn't seem too in need of 1:1 attention from mom. Mom didn't have the energy...
Dad came to relieve me at about 9:30 and now I am home.
And signing off....
OH!!! But wait! Before I forget:
Many of you know about the burrito eating contest at Qdoba on Sunday. I know that many of you have expressed an interest in coming out to support us (mainly by eating dinner there). IF you are in any way interested in participating in the burrito eating contest, PLEASE sign up soon. All registration fees (100%) go to Charlotte. You will eat as many burritos as you can in 10 minutes but they're not the typical Qdoba burritos. They take a few ounces out of each of them. The top prize package carries over a $1500 value and there are great runner-up prizes as well. It looks like the competition pool is kind of slight right now so your chances could be really good! Plus, it's for a GREAT cause. Anyway, the store would really like to have an idea of how may competitors to expect. I know some of you have given me "Maybes" so turn those thoughts to YESes and go by the store at Willow Lawn to register by Friday!!!
Thanks for your time...
Rachel
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
Friday, April 24, 2009
Charlotte is Finally Home
Charlotte is finally home after the never-ending-discharge process. We "started" going home around 11 AM and after waiting for orders, getting a dressing change, getting the last bit of antibiotics, and more all around waiting (oh and having to fix and re-do the discharge orders), we FINALLY went home around 3:30. We made it to Sonic just in time for Happy Hour and milkshake-shake (yay). Then I left Charlotte in the capable and enthusiastic hands of Uncle Kolbey and Grandpa while I drove down to Romp n' Roll, got the loaded-up SUV, and unloaded the obstacle course at the Children's Museum for tomorrow's Connections Fair.
Now back at Romp n' Roll and relieving Roger who had a HUGE day teaching four classes, hosting a playdate (happy birthday Gretchen) and doing many other things. (Good job Rog!)
Much thanks to Grandpa for staying the night at the hospital and giving Roger and I a bit of a respite. We are still both running on fumes and adrenaline but somehow we keep going.
Everything about Charlotte looks better and her white count JUMPED overnight so that is good news. We went home with IV antibiotics, oral antibiotics, but no other meds so that is good. She seemed full of energy today and continues to charm the socks off of anyone whoc comes to see her during the day.
Now the "new" news: while we checked out with the Hem/Onc team today, the doctor said, "Well, since we were supposed to start chemo today, I guess we will see you in the clinic Monday and get things rolling then." To which I said, "HUH???????" They did a double check and sure enough, this cycle is 22 days (not 28) so we were actually due to start today after all. SOOOOO, we are going back to the clinic on Monday to check labs. If everything is still a-ok, we will get the dreaded catheter inserted and will probably start things back up again on Tuesday. Now I'm REALLY glad Grandpa is here since he can probably stay a few more days until my mom can get here on Wednesday. Any child care needs for next week are on hold again so we will let you know if you signed up to help. Meanwhile, Roger and I will somehow need to reconnect, look at our schedules, and figure this out.
And now for this weekend's schedule: We are going to try to contain and curtail Charlotte's activities with others as much as possible. As much as she loves social time with her friends, we are ULTRA paranoid about germs right now. Roger and I will be going to the Children's Museum tomorrow morning, then Roger is off to his gig at the Iron Works with Southern Horizon. Then it's off to the Benefit Dinner at the Elko Center in Sandston. Then home to collapse, I guess.
Sunday is a Romp n' Roll day for mom (but not a full one); just a half day I think.
WHEW!
I think that about sums it up for me. Again, we are building momentum for the next big fundraiser at Qdoba on May 3rd. Come on out for the burrito contest or at least to eat dinner that night. This is a great opportunity to support Charlotte and a great business that has really helped us. Lisa Branner, their marketing director who is putting this whole event together, brought me dinner and brought Charlotte balloons at the hospital yesterday, So sweet! Again, you can get more details about this event by checking out the calendar on the romp n' roll-virginia center website (I will put a link in the RESOURCES section of Caring Bridge) or email me or Roger.
Other small fundraisers going on as well. The way things are going with the insurance company, we will need them.
Rachel
Now back at Romp n' Roll and relieving Roger who had a HUGE day teaching four classes, hosting a playdate (happy birthday Gretchen) and doing many other things. (Good job Rog!)
Much thanks to Grandpa for staying the night at the hospital and giving Roger and I a bit of a respite. We are still both running on fumes and adrenaline but somehow we keep going.
Everything about Charlotte looks better and her white count JUMPED overnight so that is good news. We went home with IV antibiotics, oral antibiotics, but no other meds so that is good. She seemed full of energy today and continues to charm the socks off of anyone whoc comes to see her during the day.
Now the "new" news: while we checked out with the Hem/Onc team today, the doctor said, "Well, since we were supposed to start chemo today, I guess we will see you in the clinic Monday and get things rolling then." To which I said, "HUH???????" They did a double check and sure enough, this cycle is 22 days (not 28) so we were actually due to start today after all. SOOOOO, we are going back to the clinic on Monday to check labs. If everything is still a-ok, we will get the dreaded catheter inserted and will probably start things back up again on Tuesday. Now I'm REALLY glad Grandpa is here since he can probably stay a few more days until my mom can get here on Wednesday. Any child care needs for next week are on hold again so we will let you know if you signed up to help. Meanwhile, Roger and I will somehow need to reconnect, look at our schedules, and figure this out.
And now for this weekend's schedule: We are going to try to contain and curtail Charlotte's activities with others as much as possible. As much as she loves social time with her friends, we are ULTRA paranoid about germs right now. Roger and I will be going to the Children's Museum tomorrow morning, then Roger is off to his gig at the Iron Works with Southern Horizon. Then it's off to the Benefit Dinner at the Elko Center in Sandston. Then home to collapse, I guess.
Sunday is a Romp n' Roll day for mom (but not a full one); just a half day I think.
WHEW!
I think that about sums it up for me. Again, we are building momentum for the next big fundraiser at Qdoba on May 3rd. Come on out for the burrito contest or at least to eat dinner that night. This is a great opportunity to support Charlotte and a great business that has really helped us. Lisa Branner, their marketing director who is putting this whole event together, brought me dinner and brought Charlotte balloons at the hospital yesterday, So sweet! Again, you can get more details about this event by checking out the calendar on the romp n' roll-virginia center website (I will put a link in the RESOURCES section of Caring Bridge) or email me or Roger.
Other small fundraisers going on as well. The way things are going with the insurance company, we will need them.
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.
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