Did you miss us?
It's hard to believe that our last post was on Sunday. These days have been long and full of action (and tiring...what else is new?).
Trip to the clinic yesterday was L-O-N-G and frustrating for daddy. Her numbers are low but not horrible so she was able to get both medicines. Unfortunately, she refused to take the temozolamide in any type of food no matter how much we tried to convince her that it wouldn't taste bad (and it shouldn't). She's way too smart for us now and knows that when we bring her food or drink that is unopened, it is already "tainted" with something.
Anyway, Roger took the prescription to the compounding pharmacy and they made a concoction. Fortunately, we only have to do this medicine once a day until Friday (for now). The topotecan infusion also seems to be going well.
Oh, and she's still having problems with no poop. I think it might be the Zofran that's stopping her up so we're back on the mag citrate regimen.
She's been very quiet and mellow lately. She definitely gets tired quickly. I took her to OT today and she worked hard. Then we had to go back to the orthotic place to get her brace readjusted. The PT wants her to go back to wearing the brace again just to help support her muscles. They are still carrying a lot of tension and it should help with the overcompensation.
In other news:
We found out that BOTH MD Anderson AND Shands Jacksonville are in our insurance network AND they should be able to find us radiation oncologists in-network at both places as well AND the insurance will cover the proton beam radiation (yay). This opens up a whole host of possibilities and I think MD Anderson is back on the table for options. While we know we would have great family/friend support in Jacksonville, MD Anderson is already going to be fully supportive of her protocol (since they created it) and we wouldn't have to get to know a whole host of new physicians. Plus, we know they will accept her in TX. Not so sure about FL yet.
SOOOO...Roger and I have been doing some talking and we will talk some more tonight. Look for a big announcement tomorrow I guess.
The other potentially bad news is that wherever they go, they may want her there as early as the end of next week. That's right. We may have to reschedule her birthday party. Stay tuned and we will let you know. Kind of a bummer but we're learning how to go with the flow....
Meanwhile we have also been looking at the transportation logistics. Odds are, one of us (probably Roger) would fly out to (wherever) initially with Charlotte and we would switch places about every two weeks. Whoever is in VA would cover RNR and hold down the fort. The other person would handle Charlotte and all the medical stuff. Oh joy. It really doesn't make me happy as I know that part of why and how we have survived all of this so far is because Roger and I make a great team. This goes for parenting as well as all the business stuff. Potentially, Roger and I may go over 6 weeks without some quality time together and we haven't done that since before we got married (let alone had our lives in crisis). Yes, we know we will need lots of support and we will plan to seek it out!!!
Fortunately we have some airline credits saved up on AirTran that will probably help with tickets and the fundraising efforts will definitely help with travel expenses. We will be investigating lodging options (apartments, Ronald McDonald House, etc.) once we make a final decision.
So that's my update for now. More to come. I'm hungry and dinner (cooked by the 'rents) is calling...
Rachel
Showing posts with label HEM/ONC Clinic. Show all posts
Showing posts with label HEM/ONC Clinic. Show all posts
Tuesday, June 30, 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
Monday, June 22, 2009
First IV Infusion of Topotecan
Back to reality,
Rachel gets to take Charlotte to MCV today for her first IV infusion of Topotecal. This will be an every weekday event for many many months. There's an oral version but I sincerely doubt we would be able to get CJ to take it.
I'm headed up to DC today to be in a panel discussion about jazz vocal ensembles. Should be interesting. That means, however, that Rachel will be doing most of the work today. Keep her in your thoughts. Thank goodness for Phyllis and Kolbey.
Have a good day,
Rog
Update:
OK, So Rachel gets there and they DIDN'T HAVE CJ ON THE LIST!!! URGH! ARGH!!! DUFRNVG:SKSAD Hds!!!!!!!
How many times have we said it? The main thing keeping MCV back from beeing world class is communication. The CB community is full of stories of mis-communications at MCV.
Unfortunately, it isn't isolated by any means. There was a story on NPR just this morning about patient advocates and how necessary they are because of wide spread communication problems within the nation's hospitals. If you're involved with healthcare reform, there's one area that should be tackled first!
Breathe! Gotta go "panelize!"
Update:
Yes, more than a TAD frustrating today. We get to the clinic right before 10 AM and the receptionist says "you're not on the schedule". I told her that we had been told by Dr. Khan to be there by 10 and that he was going to put the orders in first thing in the morning for her medicine. I also told her that April (our nurse) also knew what was going on. She said April was in a meeting.
SOOOO....they work on getting us in. We actually got into the clinic before 10:30, got her vitals, etc. but then we waited...and waited. About 11 (after they had drawn her labs), I asked the nurse what kind of time frame she thought we were looking at and she said they were waiting on the order to come up from Dr. Khan (WHAT?????!!!!) I informed them that I was supposed to be at work by 12:30 and I was trying to figure out exactly what I was supposed to do. Not happy.
So I proceeded to leave the clinic (since I get ZERO cell phone reception in there) and make some phone calls. Fortunately members of our fabulous RNR staff saved the day and covered my class and camp...since I didn't LEAVE clinic till 2 PM.
In the meantime...funny story: I came out of our room as Charlotte was watching movies to make all of our appointments for the remainder of the week. One of the receptionists was flagging down Matt Bitsko (the psychologist) to get a spider that had invaded their office. They were asking him to "kill it". Well, he wanted nothing to do with the spider but I told him if somebody would get me a cup, I would take care of her humanely. I don't kill spiders. Bad karma...
The receptionists thought I was nuts but I scooped up Miss Spider (she was about the size of a half dollar) in a styrofoam cup and escorted her down two flights of stairs, out the building, and into some bushes. My good deed for the day and a chance to get some fresh air.
Charlotte finally got the Topotecan about 1 PM (preceded by Zofran) and then we were able to leave the clinic. As with many of her meds, this one can cause nausea, vomiting, diarrhea, and low blood counts so we will see what happens. Oh joy.
Now I'm at Romp n' Roll and looks like I will be covering Roger's classes tonight as he got stuck in the mess that is DC traffic.
Let's hope tomorrow's clinic visit will go a bit smoother.
Rachel gets to take Charlotte to MCV today for her first IV infusion of Topotecal. This will be an every weekday event for many many months. There's an oral version but I sincerely doubt we would be able to get CJ to take it.
I'm headed up to DC today to be in a panel discussion about jazz vocal ensembles. Should be interesting. That means, however, that Rachel will be doing most of the work today. Keep her in your thoughts. Thank goodness for Phyllis and Kolbey.
Have a good day,
Rog
Update:
OK, So Rachel gets there and they DIDN'T HAVE CJ ON THE LIST!!! URGH! ARGH!!! DUFRNVG:SKSAD Hds!!!!!!!
How many times have we said it? The main thing keeping MCV back from beeing world class is communication. The CB community is full of stories of mis-communications at MCV.
Unfortunately, it isn't isolated by any means. There was a story on NPR just this morning about patient advocates and how necessary they are because of wide spread communication problems within the nation's hospitals. If you're involved with healthcare reform, there's one area that should be tackled first!
Breathe! Gotta go "panelize!"
Update:
Yes, more than a TAD frustrating today. We get to the clinic right before 10 AM and the receptionist says "you're not on the schedule". I told her that we had been told by Dr. Khan to be there by 10 and that he was going to put the orders in first thing in the morning for her medicine. I also told her that April (our nurse) also knew what was going on. She said April was in a meeting.
SOOOO....they work on getting us in. We actually got into the clinic before 10:30, got her vitals, etc. but then we waited...and waited. About 11 (after they had drawn her labs), I asked the nurse what kind of time frame she thought we were looking at and she said they were waiting on the order to come up from Dr. Khan (WHAT?????!!!!) I informed them that I was supposed to be at work by 12:30 and I was trying to figure out exactly what I was supposed to do. Not happy.
So I proceeded to leave the clinic (since I get ZERO cell phone reception in there) and make some phone calls. Fortunately members of our fabulous RNR staff saved the day and covered my class and camp...since I didn't LEAVE clinic till 2 PM.
In the meantime...funny story: I came out of our room as Charlotte was watching movies to make all of our appointments for the remainder of the week. One of the receptionists was flagging down Matt Bitsko (the psychologist) to get a spider that had invaded their office. They were asking him to "kill it". Well, he wanted nothing to do with the spider but I told him if somebody would get me a cup, I would take care of her humanely. I don't kill spiders. Bad karma...
The receptionists thought I was nuts but I scooped up Miss Spider (she was about the size of a half dollar) in a styrofoam cup and escorted her down two flights of stairs, out the building, and into some bushes. My good deed for the day and a chance to get some fresh air.
Charlotte finally got the Topotecan about 1 PM (preceded by Zofran) and then we were able to leave the clinic. As with many of her meds, this one can cause nausea, vomiting, diarrhea, and low blood counts so we will see what happens. Oh joy.
Now I'm at Romp n' Roll and looks like I will be covering Roger's classes tonight as he got stuck in the mess that is DC traffic.
Let's hope tomorrow's clinic visit will go a bit smoother.
Thursday, June 11, 2009
Every Day is a Bonus
We keep having big days but I guess they can't help but be big when every day is a bonus.
Yesterday morning as I was getting Charlotte ready for our day, I noticed something odd on her belly and found it was a tick! Rachel and I tried to get it out but it was embedded pretty deep so we resolved to get professional help.
So we went to the vet! I mean, who is better at dealing with ticks than a vet?
Well I actually had a breakfast meeting with Cate Newbanks from FACES of Virginia at the diner formerly known as Pete's and CJ tagged along. The tick wasn't going anywhere, the vet is literally right around the corner, and she wasn't showing any symptoms of anything, so we had a very nice breakfast. Charlotte had pancakes (surprize!)
We went to the vet right after breakfast and although they were sympathetic, they weren't comfortable working on a human. The chemicals they use on animals aren't appropriate for children.
So I called the pediatrician and they fit us in as soon as I got there. They weren't incredibly busy right at that moment so it was convenient for everyone. We saw Dr. Map (not kidding). I don't think I had ever met him before. Charlotte wasn't very interested in cooperating with anyone who had a stethoscope around their neck so I had to pick her up while Dr. Map worked on the tick.
It took a moderately long time and CJ was quite the champ despite her anxiety. We counted to 20, sang the ABC song, and spelled her name. I could tell it hurt a little as she counted/sang/spelled through gritted teeth but she didn't stop. I was very proud of her.
We didn't quite get through "Reynolds" when he announced success. He got the head, hooks, sucker and everything.
For the record, Dr. Map recommended Vaseline or nail polish to get the bad boy out. Unfortunately, we had probably killed it with our attention so it wouldn't have worked for us. It's a very bad year for ticks already so everyone check each other thoroughly after being outdoors. (I have the image of monkeys grooming each other in my head.)
So after that, we ended up at Romp n' Roll to bring lunch to Mommy who had taught the morning preview classes.
That, by the way, has been a tremendous success attendance-wise. Very exciting.
I left CJ at RNR with Rachel and came home to do some work. Aunt Phyllis came in from Florida (Rachel and CJ went to pick her up at the airport) so we have our latest in-house support person. She wasn't here an hour before the reorganizing glint came into her eye. She'S REALLY good at that sort of thing.
Then I headed back to RNR to teach my evening previews. The posters for the concert series came in and man! do they look great!
Today is another big day with a meeting with Drs. Kahn and Chung at MCV to discuss latest protocol options (we had a deep, emotional discussion about that last night), Camp, and the 1st Concert Series concert (which might be moved indoors due to weather. Either way, it'll be a hoot with Clay Mottley and the Taters!)
Rachel and I will be first in line at the blood mobile which opens at 3pm.
As always, we'll update everyone as to what we decide for our next step. Our positive energy need level is back up orange. That indicates a higher level of need for thoughts, energy, prayers, meditations, visualizations, puppies, kittens, balloons, chocolate, ice cream, chocolate ice cream, etc...in other words, we're feeling kind of down right now.
Not necessarily important to tell us. Just do it. Please.
One thing CJ is not lacking is cuter-than-all-getout clothes. They just keep appearing. And we keep putting her in them. She keeps being cute.
While I mentioned the amazing things going on throughout the CB community, there are still many sorrows being handed out. Please keep those in your thoughts too.
Thanks,
Rog
p.s. For those not connected to us via Facebook, there are several with which we are associated. Rachel and I both have our own, there's Get Well Charlotte, and Romp n' Roll at VA Center. The last two you need to "become a fan" to join. Just in case you didn't already have information overload.
Update:
Rompy's Concert Series is currently rockin'! The Taters and Clay Mottley are jamming inside romp n' roll. There was a threat of some summer storms so we moved the concerts inside "just in case". Sun is shining all the same but no matter. We've had a great crowd and lots of fun!!!
In addition, over 25 people have given blood at the bloodmobile today (include Annette, Michael, Babz, and myself). Roger tried to give but his blood kept clotting up...oh well. Final count on the blood drive is 25 came in, 19 gave and 2 of the 19 gave a "double dose" through a special system where they can get double the usable blood without completely disarming the donor.
Thanks again to everyone for coming out for the fun!
So, I'm sure everyone is chomping at the bit to find out the "news". Well....let's just start by saying it was one of the more frustrating trips to the hospital. We were told there was an appointment at 12 PM with Dr. Khan and Dr. Chung but we were supposed to meet up on the 6th floor (neurosurgery). We did as we were told and finally about 1 PM met with a DIFFERENT doctor who didn't really know why we were here.
FINALLY, Dr. Chung arrived but while he claimed to have been following Charlotte's case and be "in the loop" about things, he didn't seem to be able to tell us much about what we would do for Charlotte's specific situation. We asked him about proton beam radiation options and again he was pretty nondescript and didn't seem to have an opinion or much information. Basically I got a "Radiation 101" tutorial but nothing specific with a timeline or other information regarding Charlotte's treatment plan.
Finally, I was pretty abrupt and asked some pointed questions about 1) Where Dr. Khan was in all of this and 2) Why we weren't getting any answers when we had felt this HUGE sense of urgency since the news of tumor regrowth for us to get things DONE. In short, he couldn't really help us and he tried to page Dr. Khan. After about 2:30 (yes, we had been there since NOON), we settled on going down to the clinic to search out Dr. Khan and see if we could reschedule and/or find some answers.
Once we got down to the clinic, I explained why we were there and they got Dr. Khan for us. Apparently there was a wonderful series of miscommunications. Dr. Khan wasn't planning to come to the meeting while we were expecting him and (blah blah blah). I expressed my concerns and he was very understanding. Here is what I HAVE learned:
1. Dr. Khan just received the new protocol from Dr. Wolff at MD Anderson. They have some new ideas and information which he will share thoroughly with us once he reviews it and gets some clarification/follow up questions answered (hopefully by Monday).
2. Charlotte will have a spinal tap sometime next week (probably) to insure that there is no tumor cells in the spinal fluid. She will also probably start some oral chemotherapy next week (based on the protocol).
3. Based on this plan, it looks like MD Anderson is recommending localized radiation which Dr. Khan is thinking towards proton beam radiation, mainly because it offers the best chance at minimizing harmful effects of radiation while allowing higher doses of radiation to be used on the tumor. Of course, now we are going to have to figure out WHERE we will get the radiation done because it is only at certain places in the country. MD Anderson is one option but we know that they are out of network for our insurance. We might be able to find an "in-network" option.
So that's where we are. We don't have a lot more answers and it was a rather frustrating day but at least it's a tiny step in the right direction.
I gotta go clean up the gym and head home so I"ll sign off...
Rachel
Yesterday morning as I was getting Charlotte ready for our day, I noticed something odd on her belly and found it was a tick! Rachel and I tried to get it out but it was embedded pretty deep so we resolved to get professional help.
So we went to the vet! I mean, who is better at dealing with ticks than a vet?
Well I actually had a breakfast meeting with Cate Newbanks from FACES of Virginia at the diner formerly known as Pete's and CJ tagged along. The tick wasn't going anywhere, the vet is literally right around the corner, and she wasn't showing any symptoms of anything, so we had a very nice breakfast. Charlotte had pancakes (surprize!)
We went to the vet right after breakfast and although they were sympathetic, they weren't comfortable working on a human. The chemicals they use on animals aren't appropriate for children.
So I called the pediatrician and they fit us in as soon as I got there. They weren't incredibly busy right at that moment so it was convenient for everyone. We saw Dr. Map (not kidding). I don't think I had ever met him before. Charlotte wasn't very interested in cooperating with anyone who had a stethoscope around their neck so I had to pick her up while Dr. Map worked on the tick.
It took a moderately long time and CJ was quite the champ despite her anxiety. We counted to 20, sang the ABC song, and spelled her name. I could tell it hurt a little as she counted/sang/spelled through gritted teeth but she didn't stop. I was very proud of her.
We didn't quite get through "Reynolds" when he announced success. He got the head, hooks, sucker and everything.
For the record, Dr. Map recommended Vaseline or nail polish to get the bad boy out. Unfortunately, we had probably killed it with our attention so it wouldn't have worked for us. It's a very bad year for ticks already so everyone check each other thoroughly after being outdoors. (I have the image of monkeys grooming each other in my head.)
So after that, we ended up at Romp n' Roll to bring lunch to Mommy who had taught the morning preview classes.
That, by the way, has been a tremendous success attendance-wise. Very exciting.
I left CJ at RNR with Rachel and came home to do some work. Aunt Phyllis came in from Florida (Rachel and CJ went to pick her up at the airport) so we have our latest in-house support person. She wasn't here an hour before the reorganizing glint came into her eye. She'S REALLY good at that sort of thing.
Then I headed back to RNR to teach my evening previews. The posters for the concert series came in and man! do they look great!
Today is another big day with a meeting with Drs. Kahn and Chung at MCV to discuss latest protocol options (we had a deep, emotional discussion about that last night), Camp, and the 1st Concert Series concert (which might be moved indoors due to weather. Either way, it'll be a hoot with Clay Mottley and the Taters!)
Rachel and I will be first in line at the blood mobile which opens at 3pm.
As always, we'll update everyone as to what we decide for our next step. Our positive energy need level is back up orange. That indicates a higher level of need for thoughts, energy, prayers, meditations, visualizations, puppies, kittens, balloons, chocolate, ice cream, chocolate ice cream, etc...in other words, we're feeling kind of down right now.
Not necessarily important to tell us. Just do it. Please.
One thing CJ is not lacking is cuter-than-all-getout clothes. They just keep appearing. And we keep putting her in them. She keeps being cute.
While I mentioned the amazing things going on throughout the CB community, there are still many sorrows being handed out. Please keep those in your thoughts too.
Thanks,
Rog
p.s. For those not connected to us via Facebook, there are several with which we are associated. Rachel and I both have our own, there's Get Well Charlotte, and Romp n' Roll at VA Center. The last two you need to "become a fan" to join. Just in case you didn't already have information overload.
Update:
Rompy's Concert Series is currently rockin'! The Taters and Clay Mottley are jamming inside romp n' roll. There was a threat of some summer storms so we moved the concerts inside "just in case". Sun is shining all the same but no matter. We've had a great crowd and lots of fun!!!
In addition, over 25 people have given blood at the bloodmobile today (include Annette, Michael, Babz, and myself). Roger tried to give but his blood kept clotting up...oh well. Final count on the blood drive is 25 came in, 19 gave and 2 of the 19 gave a "double dose" through a special system where they can get double the usable blood without completely disarming the donor.
Thanks again to everyone for coming out for the fun!
So, I'm sure everyone is chomping at the bit to find out the "news". Well....let's just start by saying it was one of the more frustrating trips to the hospital. We were told there was an appointment at 12 PM with Dr. Khan and Dr. Chung but we were supposed to meet up on the 6th floor (neurosurgery). We did as we were told and finally about 1 PM met with a DIFFERENT doctor who didn't really know why we were here.
FINALLY, Dr. Chung arrived but while he claimed to have been following Charlotte's case and be "in the loop" about things, he didn't seem to be able to tell us much about what we would do for Charlotte's specific situation. We asked him about proton beam radiation options and again he was pretty nondescript and didn't seem to have an opinion or much information. Basically I got a "Radiation 101" tutorial but nothing specific with a timeline or other information regarding Charlotte's treatment plan.
Finally, I was pretty abrupt and asked some pointed questions about 1) Where Dr. Khan was in all of this and 2) Why we weren't getting any answers when we had felt this HUGE sense of urgency since the news of tumor regrowth for us to get things DONE. In short, he couldn't really help us and he tried to page Dr. Khan. After about 2:30 (yes, we had been there since NOON), we settled on going down to the clinic to search out Dr. Khan and see if we could reschedule and/or find some answers.
Once we got down to the clinic, I explained why we were there and they got Dr. Khan for us. Apparently there was a wonderful series of miscommunications. Dr. Khan wasn't planning to come to the meeting while we were expecting him and (blah blah blah). I expressed my concerns and he was very understanding. Here is what I HAVE learned:
1. Dr. Khan just received the new protocol from Dr. Wolff at MD Anderson. They have some new ideas and information which he will share thoroughly with us once he reviews it and gets some clarification/follow up questions answered (hopefully by Monday).
2. Charlotte will have a spinal tap sometime next week (probably) to insure that there is no tumor cells in the spinal fluid. She will also probably start some oral chemotherapy next week (based on the protocol).
3. Based on this plan, it looks like MD Anderson is recommending localized radiation which Dr. Khan is thinking towards proton beam radiation, mainly because it offers the best chance at minimizing harmful effects of radiation while allowing higher doses of radiation to be used on the tumor. Of course, now we are going to have to figure out WHERE we will get the radiation done because it is only at certain places in the country. MD Anderson is one option but we know that they are out of network for our insurance. We might be able to find an "in-network" option.
So that's where we are. We don't have a lot more answers and it was a rather frustrating day but at least it's a tiny step in the right direction.
I gotta go clean up the gym and head home so I"ll sign off...
Rachel
Monday, April 27, 2009
Trip to the Clinic was as Good as Could be Expected
Charlotte was bright-eyed at 5:30 this AM! Not so nice for mama who didn't get to bed till past midnight. Oh well.
Trip to the clinic was as good as could be expected. Her numbers looked really good. The NP was checking her out and went to look in her ears. You will never guess what they found: A TICK!!! Yes, an actual, live, tick on the inner rim of her earlobe (the pinna for those who know the technical terms). It was alive and attached but not engorged. So the NP got some alcohol and tweezers and detached the little "sucker" quickly without too much drama.
Then it was dreaded catheter time. It was pretty rough and no better or worse than usual. The nurses did a fabulous job but she was still miserable. She selected a new "accessory set" from the prize box. Nothing like a new purse and jewelry to make a girl happy! Then we went home with a special request to go to McDonalds. She actually fell asleep on the ride home so we did the drive thru and then ate at home. Her appetite has been great lately.
Now she is "chillin" with Grandpa watching Dora. Grandpa will take her in tomorrow morning and Roger or I (probably me) will meet up with him tomorrow afternoon. We will see how long the admission process takes this time!
I now have three volunteers working on a display board for Charlotte. Thanks to Sarah Blankenship for coordinating this. She is contacting the other two moms today and they are going to put their creative heads together.
Roger has been busy all morning at Romp n' Roll and I'm sure he will report on his endeavors later.
Gotta run and be as productive as I can...or maybe a nap???
Rachel
Trip to the clinic was as good as could be expected. Her numbers looked really good. The NP was checking her out and went to look in her ears. You will never guess what they found: A TICK!!! Yes, an actual, live, tick on the inner rim of her earlobe (the pinna for those who know the technical terms). It was alive and attached but not engorged. So the NP got some alcohol and tweezers and detached the little "sucker" quickly without too much drama.
Then it was dreaded catheter time. It was pretty rough and no better or worse than usual. The nurses did a fabulous job but she was still miserable. She selected a new "accessory set" from the prize box. Nothing like a new purse and jewelry to make a girl happy! Then we went home with a special request to go to McDonalds. She actually fell asleep on the ride home so we did the drive thru and then ate at home. Her appetite has been great lately.
Now she is "chillin" with Grandpa watching Dora. Grandpa will take her in tomorrow morning and Roger or I (probably me) will meet up with him tomorrow afternoon. We will see how long the admission process takes this time!
I now have three volunteers working on a display board for Charlotte. Thanks to Sarah Blankenship for coordinating this. She is contacting the other two moms today and they are going to put their creative heads together.
Roger has been busy all morning at Romp n' Roll and I'm sure he will report on his endeavors later.
Gotta run and be as productive as I can...or maybe a nap???
Rachel
Tuesday, April 21, 2009
Very quick post before a very busy day.
Roger and I are off to work. Charlotte is home with Uncle Kolbey who is back from a quick trip to Florida.
She had a good day yesterday with a playdate and trip to the grocery store. Roger takes her back to the clinic today for a numbers check.
We need your help. Please go HERE to take a very brief 5 question survey. As some of you know, we have been throwing around the idea of a celebration/fundraising Cruise for Charlotte to take place sometime in the Fall of 2010. We need some input so please complete the survey (even if you think you might not go on the cruise). Thanks.
Gotta get to work...
Rachel
What can I say? We just LOOOOOVE the hospital!
She got to clinic this afternoon and had a fever of 102. Needless to say, we are BACK in the hospital. We'll be there at least 48 hours so lots of plans on "hold". We will keep you updated. If you were signed up to watch Charlotte this week, it may not need to happen (then again, we might need you to hang out with her at MCV on Thursday evening. Have to check the schedule.).
If you missed the previous post, please make sure you read it and take the Cruise for Charlotte survey. We understand that many of you won't be able to particiapte, but we'd like to get a general idea of who would be interested. I saw some folks with school age kids comment about looking at a different time (not during the school year) and we may think about that...
That's it for now. I gotta go get ready to teach Roger's classes tonight.
Rachel
Here we are again.
Maybe we should just set up shop here and never leave. Kind of frustrating. Charlotte actually looks and seems to feel pretty good. The Tylenol works pretty well to ease the aches and pains of the fever.
Timing is particularly bad as this week has so many things going on. If you're scheduled to watch Charlotte the next few days, it will most likely be at the hospital. If you're unable to come here, please let us know asap. Thursday in particular is very important.
So I caught Child Life just before they left and they had a laptop for me so I am connected (just in case you didn't realize).
The room is small and only designed for one bed which isn't a bad thing. And the DVD player works.
A lot of kids here today. Hopefully most of them are just dealing with colds and things that will let them go home soon. Come to think of it, I hope that for us too
I'm hoping we can get a visitor or two tomorrow morning (preferably with coffee!). Rachel is covering classes for me tonight and will relieve me tomorrow afternoon.
The cruise survey has garnered a great deal of interest. Already, we have dozens of answers. Thanks a lot. If you haven't taken the survey, please click on the link Rachel put up. Please go HERE to take a very brief 5 question survey. Thanks, Rog
Roger and I are off to work. Charlotte is home with Uncle Kolbey who is back from a quick trip to Florida.
She had a good day yesterday with a playdate and trip to the grocery store. Roger takes her back to the clinic today for a numbers check.
We need your help. Please go HERE to take a very brief 5 question survey. As some of you know, we have been throwing around the idea of a celebration/fundraising Cruise for Charlotte to take place sometime in the Fall of 2010. We need some input so please complete the survey (even if you think you might not go on the cruise). Thanks.
Gotta get to work...
Rachel
What can I say? We just LOOOOOVE the hospital!
She got to clinic this afternoon and had a fever of 102. Needless to say, we are BACK in the hospital. We'll be there at least 48 hours so lots of plans on "hold". We will keep you updated. If you were signed up to watch Charlotte this week, it may not need to happen (then again, we might need you to hang out with her at MCV on Thursday evening. Have to check the schedule.).
If you missed the previous post, please make sure you read it and take the Cruise for Charlotte survey. We understand that many of you won't be able to particiapte, but we'd like to get a general idea of who would be interested. I saw some folks with school age kids comment about looking at a different time (not during the school year) and we may think about that...
That's it for now. I gotta go get ready to teach Roger's classes tonight.
Rachel
Here we are again.
Maybe we should just set up shop here and never leave. Kind of frustrating. Charlotte actually looks and seems to feel pretty good. The Tylenol works pretty well to ease the aches and pains of the fever.
Timing is particularly bad as this week has so many things going on. If you're scheduled to watch Charlotte the next few days, it will most likely be at the hospital. If you're unable to come here, please let us know asap. Thursday in particular is very important.
So I caught Child Life just before they left and they had a laptop for me so I am connected (just in case you didn't realize).
The room is small and only designed for one bed which isn't a bad thing. And the DVD player works.
A lot of kids here today. Hopefully most of them are just dealing with colds and things that will let them go home soon. Come to think of it, I hope that for us too
I'm hoping we can get a visitor or two tomorrow morning (preferably with coffee!). Rachel is covering classes for me tonight and will relieve me tomorrow afternoon.
The cruise survey has garnered a great deal of interest. Already, we have dozens of answers. Thanks a lot. If you haven't taken the survey, please click on the link Rachel put up. Please go HERE to take a very brief 5 question survey. Thanks, Rog
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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