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
Thursday, June 11, 2009
Tuesday, June 9, 2009
Staying Busy, Fundraising Update
Charlotte had a great day yesterday and a very good am this morning.
Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.
Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.
One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.
So I got to go back out to deliver some more posters/flyers to friendly local businesses.
Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.
I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.
This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.
Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.
The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.
Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.
Keep cruizin' the CB sites. There are lots of amazing stories goin on!
Rog
Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.
We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.
We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)
Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.
We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.
Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.
We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.
If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.
Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.
Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!
So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.
Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.
Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?
Signing off...
Rachel
Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.
Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.
One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.
So I got to go back out to deliver some more posters/flyers to friendly local businesses.
Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.
I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.
This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.
Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.
The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.
Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.
Keep cruizin' the CB sites. There are lots of amazing stories goin on!
Rog
Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.
We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.
We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)
Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.
We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.
Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.
We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.
If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.
Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.
Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!
So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.
Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.
Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?
Signing off...
Rachel
Monday, June 8, 2009
Yesterday was Another Busy Day
How can a day off be so exhausting? Yesterday was another busy day. We made it to the church picnic which offered wonderful food, fabulous fellowship, and good weather. The afternoon was spent going in different directions. I went with Amy down to Carytown for a little retail therapy and Roger and Charlotte headed up to Wyatt's birthday party. We met up near the end of it all.
Charlotte continues to do her "own thing" when it comes to social situations. She has always been this way (very independent girl that she is) but I think she is even more feeling the need to be independent. She definitely likes people and knows how to socialize but just doesn't always choose to. Sometimes I think the extra attention kind of gets on her nerves.
Anyway, we all came home and pretty much collapsed Sunday night and now it's off for another week. Amy is here for one more day. I am so happy that she was able to come out and see us. She is a dear friend from graduate school and it has been so good to reconnect after not really seeing each other for YEARS.
Gotta go be productive...and get coffee...
Rachel
Charlotte continues to do her "own thing" when it comes to social situations. She has always been this way (very independent girl that she is) but I think she is even more feeling the need to be independent. She definitely likes people and knows how to socialize but just doesn't always choose to. Sometimes I think the extra attention kind of gets on her nerves.
Anyway, we all came home and pretty much collapsed Sunday night and now it's off for another week. Amy is here for one more day. I am so happy that she was able to come out and see us. She is a dear friend from graduate school and it has been so good to reconnect after not really seeing each other for YEARS.
Gotta go be productive...and get coffee...
Rachel
Sunday, June 7, 2009
Damn, she's adorable!
Wow! What a day yesterday. As usual, our friends and family get here and we immediately make them work. Amy was no exception. She got here Friday morning and was watching Charlotte almost before she got her luggage.
Yesterday morning, both Rachel and I were running around like proverbial chickens getting ready for classes at Romp n' Roll (Rachel) and the Ashland Strawberry Faire (me) so Amy was on duty early. It definately helps that Charlotte, who had never met Aunt Amy, seems to love her to death.
For the sake of plot development, I need to wander off track for a bit.
The weather the last few days has been rainy to say the least. We had a couple of thunderstorms that were worthy of the Illinois storms I remember from when I was little. Samantha, Emily, and I, along with a "grownup" member were stuck in Romp n' Roll Wednesday while the heavens open up. The wind was blowing, the trees were boogying (sp?), the rain was going sideways, and, to our amazement, a Target shopping cart got loose and was slowly being pushed around the parking lot area in front of our door. It was moving in an almost nonchalant manner, as if the ghost taking its purchases to the car (ghost train?) could care less about the weather (I guess they wouldn't, would they?).
When the cart passed the front of RNR, we were amused and then got distracted by the hope that there wasn't a tornado setting down in the parking lot. When, a few minutes later, the cart passed by again, going the other direction, in the same nonchalant manner, then it started getting bizarre. Maybe the ghost forgot where it parked the ghost train.
This poor, indecisive cart passed by our front door no less than four times! We never saw it turn around and the fact that it did kept us nervous about tornados.
We also had some ceiling tile casualties in the back right next to the garage door. If it's not a leak, it's probably rain that got blown up under the awning and got in via the top of the garage door. But MAN! did it rain!
It kept raining and spitting and threatening to rain and didn't stop until Saturday morning. I was telling everyone how nice it was going to be for the Strawberry Faire during my Friday classes but it was hard to convince people with the gloomy weather right outside the window.
Which conveniently brings me back to my original story (How 'bout DAT fer a Segway?! Hemingway, eachyer heart out, eh?!).
I couldn't set up the tent and tables for our booth at the Strawberry Faire until Saturday morning since it was still drizzeling off and on so I had to get up extra early and head over. Good thing we only live 1 mile away. :-)
Everything got set up with a minimum amount of drama and the Ashland Jaycees helped a great deal Their booth was next to ours and they always have someone willing to help out. When scheduling made me leave early and there was no place to put our stuff, they didn't hesitate a second. The Flanagans, fellow founders of the chapter, stepped right up and all our junk is sitting in their family room (guess I need to pick that up sometime today).
Charlotte (oh...right...this is supposed to be about her, isn't it?) and Aunt Amy walked down to the faire and talk about an attention hog! Amy said she had trouble actually getting TO the faire what with all the people recognizing CJ and stopping them to see the little princess. It didn't hurt that she was wearing a NEW red "Bald Chicks Rock" that Megan Blake's mother made for her (I told her she could get a cottage industry going with those) and her yellow wide brimmed hat "with the bow in the front!" Of course, Amy doesn't know any of these people and they keep coming up and talking to CJ like they know her which they probably do. Amy was a champ and resisted the urge to tell everyone, "Stay away from my child!" Very funny.
In the end, they did get to the faire and Charlotte walked all over the place and saw lots of friends, teachers, and RNR members all morning. I bought a slab o' strawberries (who didn't?) and we schlurped on them all day. CJ had developed the habit of only eating the skin of strawberries. Not sure why. But I encouraged her to take a big bite of these strawberries and once she did, there was no stopping her!
Another side note: I'm not fond of strawberries. Never really have been. I know they're really good for you and I can tolerate them without gagging but I never reach for a strawberry if I've got the munchies. Not like blueberries. (Mmmmm...blueberries...oohhhh!) But the strawberries they had at the Ashland Strawberry Faire yesterday might have changed my mind. Wherever they were from, Hanover or California, I don't care. They were sweet through and through and I think I ate a couple of little baskets by myself. Never in my life have I had a taste turnaround like that (except maybe with cottage cheese but that's another story).
Charlotte ate a bunch too.
Amy finally took her home after a good long while and when I got back to get ready for my Southern Horizon gig at Cold Harbor, Charlotte was presiding over a tea party with Amy, Rachel, and Uncle Kolbey. I got suckered into sitting down for a little bit too.
Damn, she's adorable!
The result was that Charlotte had a great day as did Romp n' Roll, the Greater Ashland Jaycees, 30,000 Ashland Strawberry Faire guests, and all those folks at Cold Harbor who got to see that incredible sunset followed by an amazing moonrise! (I haven't even heard about Kids Night Out yet!)
Today, Charlotte and I will be headed to her boyfriend Wyatt's 4th Birthday party. That can only mean that Charlotte's is right around the corner!
Hope this post hasn't strained your eyes too much.
Rog
p.s. I have added a new skill set to my resume...FACE PAINTING! I've never done it before and I was expecting someone else to do it yesterday but as fate would have it, I was the one available when someone asked for it. I'm attaching a little example of my new skill! :-P
Yesterday morning, both Rachel and I were running around like proverbial chickens getting ready for classes at Romp n' Roll (Rachel) and the Ashland Strawberry Faire (me) so Amy was on duty early. It definately helps that Charlotte, who had never met Aunt Amy, seems to love her to death.
For the sake of plot development, I need to wander off track for a bit.
The weather the last few days has been rainy to say the least. We had a couple of thunderstorms that were worthy of the Illinois storms I remember from when I was little. Samantha, Emily, and I, along with a "grownup" member were stuck in Romp n' Roll Wednesday while the heavens open up. The wind was blowing, the trees were boogying (sp?), the rain was going sideways, and, to our amazement, a Target shopping cart got loose and was slowly being pushed around the parking lot area in front of our door. It was moving in an almost nonchalant manner, as if the ghost taking its purchases to the car (ghost train?) could care less about the weather (I guess they wouldn't, would they?).
When the cart passed the front of RNR, we were amused and then got distracted by the hope that there wasn't a tornado setting down in the parking lot. When, a few minutes later, the cart passed by again, going the other direction, in the same nonchalant manner, then it started getting bizarre. Maybe the ghost forgot where it parked the ghost train.
This poor, indecisive cart passed by our front door no less than four times! We never saw it turn around and the fact that it did kept us nervous about tornados.
We also had some ceiling tile casualties in the back right next to the garage door. If it's not a leak, it's probably rain that got blown up under the awning and got in via the top of the garage door. But MAN! did it rain!
It kept raining and spitting and threatening to rain and didn't stop until Saturday morning. I was telling everyone how nice it was going to be for the Strawberry Faire during my Friday classes but it was hard to convince people with the gloomy weather right outside the window.
Which conveniently brings me back to my original story (How 'bout DAT fer a Segway?! Hemingway, eachyer heart out, eh?!).
I couldn't set up the tent and tables for our booth at the Strawberry Faire until Saturday morning since it was still drizzeling off and on so I had to get up extra early and head over. Good thing we only live 1 mile away. :-)
Everything got set up with a minimum amount of drama and the Ashland Jaycees helped a great deal Their booth was next to ours and they always have someone willing to help out. When scheduling made me leave early and there was no place to put our stuff, they didn't hesitate a second. The Flanagans, fellow founders of the chapter, stepped right up and all our junk is sitting in their family room (guess I need to pick that up sometime today).
Charlotte (oh...right...this is supposed to be about her, isn't it?) and Aunt Amy walked down to the faire and talk about an attention hog! Amy said she had trouble actually getting TO the faire what with all the people recognizing CJ and stopping them to see the little princess. It didn't hurt that she was wearing a NEW red "Bald Chicks Rock" that Megan Blake's mother made for her (I told her she could get a cottage industry going with those) and her yellow wide brimmed hat "with the bow in the front!" Of course, Amy doesn't know any of these people and they keep coming up and talking to CJ like they know her which they probably do. Amy was a champ and resisted the urge to tell everyone, "Stay away from my child!" Very funny.
In the end, they did get to the faire and Charlotte walked all over the place and saw lots of friends, teachers, and RNR members all morning. I bought a slab o' strawberries (who didn't?) and we schlurped on them all day. CJ had developed the habit of only eating the skin of strawberries. Not sure why. But I encouraged her to take a big bite of these strawberries and once she did, there was no stopping her!
Another side note: I'm not fond of strawberries. Never really have been. I know they're really good for you and I can tolerate them without gagging but I never reach for a strawberry if I've got the munchies. Not like blueberries. (Mmmmm...blueberries...oohhhh!) But the strawberries they had at the Ashland Strawberry Faire yesterday might have changed my mind. Wherever they were from, Hanover or California, I don't care. They were sweet through and through and I think I ate a couple of little baskets by myself. Never in my life have I had a taste turnaround like that (except maybe with cottage cheese but that's another story).
Charlotte ate a bunch too.
Amy finally took her home after a good long while and when I got back to get ready for my Southern Horizon gig at Cold Harbor, Charlotte was presiding over a tea party with Amy, Rachel, and Uncle Kolbey. I got suckered into sitting down for a little bit too.
Damn, she's adorable!
The result was that Charlotte had a great day as did Romp n' Roll, the Greater Ashland Jaycees, 30,000 Ashland Strawberry Faire guests, and all those folks at Cold Harbor who got to see that incredible sunset followed by an amazing moonrise! (I haven't even heard about Kids Night Out yet!)
Today, Charlotte and I will be headed to her boyfriend Wyatt's 4th Birthday party. That can only mean that Charlotte's is right around the corner!
Hope this post hasn't strained your eyes too much.
Rog
p.s. I have added a new skill set to my resume...FACE PAINTING! I've never done it before and I was expecting someone else to do it yesterday but as fate would have it, I was the one available when someone asked for it. I'm attaching a little example of my new skill! :-P
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
Monday, June 1, 2009
Stuck in Limbo Land
Good morning,
Charlotte had a pretty good night except for some drama taking vitals at about 4:30am. Her temp was registering 95 degrees so Nurse Suzie was trying to take it orally, which CJ was having none of. It had actually worked earlier in the night but I think it was only because she was unconscious.
After a bit, I just told Suzie not to worry about it since it wasn't an issue and not worth the stress. This morning's temp read 97 so we're cool.
We talked to Meredith via Skype/Hopecam as well as Reese and her mom. I think Reese was far more into it than Charlotte this time.
Rachel and I spoke with the pediatric psychologist, Dr. Bitsko this morning to kind of take a look at how we're doing. The bottom line being we're really tired and definately feeling the stress but not to the point where we need happy pills.
CJ had a small BM yesterday which was not much fun and nothing since. We tried to get her to take some Docusate (sp?) but that's about as easy as getting the cat to take his antibiotic (without the claws). We've asked about magnesium citrate which she will take and it seemed to work at home. Word on the street is that they have ordered the mag citrate. Now we are just waiting for the results of the CT scan and orders to take out the ventric. In fact, the neurosurgery resident just came in to check on her so we are moments away....
(The previous was mostly Roger's post from earlier today. Now I will put in my two cents):
First a big thank you to Grandpa and Juanita Bonita today. Roger and I had to fly in different directions this afternoon for Romp n' Roll so it was yet again good to have them around to keep Charlotte company. Plus, Juanita has been cooking away and keeping us well fed and the freezer is getting stocked with even more goodies!
I can't believe it's June! In some ways this has been both the slowest and fastest 6 months (or so) on record. I guess it's no wonder I'm drained (physically, emotionally, etc.). Dr. Bitsko made a point today that reallly hit home: for most families dealing with stuff like this at this point in the process, there is usuallly some stabilization. Families will still be in treatment but at least have a plan and a terminal goal for treatments. We are still stuck in limbo land. That is one of the most frustrating things right now. We started out running a marathon and they have changed the course.
It reminds me of the time Roger ran the DC Marathon right after the war in Iraq started. The organization organizing the race backed out but many people planned to run the race anyway. Because it was an unofficial volunteer effort, the runners had to run on the sidewalk instead of the street, there was minimal police coverage to handle traffic and they even changed the route. It was (to say the least) kind of a mess. Roger and I BOTH got lost in the process of the race and he didn't run a good time because of the delays. Does it seem even more ironic that he ran that race to raise money for St. Judes Childrens Hospital that year?
Anyway, so we are on this long course but we dont' know if we are running a marathon, an ironman, or a 100K race. We don't event know where the finish line is. It's a little...ok a LOT frustrating. Here's hoping we will get some answers soon regarding our next path.
Gotta run while we get a ventric out!
Rachel
Charlotte had a pretty good night except for some drama taking vitals at about 4:30am. Her temp was registering 95 degrees so Nurse Suzie was trying to take it orally, which CJ was having none of. It had actually worked earlier in the night but I think it was only because she was unconscious.
After a bit, I just told Suzie not to worry about it since it wasn't an issue and not worth the stress. This morning's temp read 97 so we're cool.
We talked to Meredith via Skype/Hopecam as well as Reese and her mom. I think Reese was far more into it than Charlotte this time.
Rachel and I spoke with the pediatric psychologist, Dr. Bitsko this morning to kind of take a look at how we're doing. The bottom line being we're really tired and definately feeling the stress but not to the point where we need happy pills.
CJ had a small BM yesterday which was not much fun and nothing since. We tried to get her to take some Docusate (sp?) but that's about as easy as getting the cat to take his antibiotic (without the claws). We've asked about magnesium citrate which she will take and it seemed to work at home. Word on the street is that they have ordered the mag citrate. Now we are just waiting for the results of the CT scan and orders to take out the ventric. In fact, the neurosurgery resident just came in to check on her so we are moments away....
(The previous was mostly Roger's post from earlier today. Now I will put in my two cents):
First a big thank you to Grandpa and Juanita Bonita today. Roger and I had to fly in different directions this afternoon for Romp n' Roll so it was yet again good to have them around to keep Charlotte company. Plus, Juanita has been cooking away and keeping us well fed and the freezer is getting stocked with even more goodies!
I can't believe it's June! In some ways this has been both the slowest and fastest 6 months (or so) on record. I guess it's no wonder I'm drained (physically, emotionally, etc.). Dr. Bitsko made a point today that reallly hit home: for most families dealing with stuff like this at this point in the process, there is usuallly some stabilization. Families will still be in treatment but at least have a plan and a terminal goal for treatments. We are still stuck in limbo land. That is one of the most frustrating things right now. We started out running a marathon and they have changed the course.
It reminds me of the time Roger ran the DC Marathon right after the war in Iraq started. The organization organizing the race backed out but many people planned to run the race anyway. Because it was an unofficial volunteer effort, the runners had to run on the sidewalk instead of the street, there was minimal police coverage to handle traffic and they even changed the route. It was (to say the least) kind of a mess. Roger and I BOTH got lost in the process of the race and he didn't run a good time because of the delays. Does it seem even more ironic that he ran that race to raise money for St. Judes Childrens Hospital that year?
Anyway, so we are on this long course but we dont' know if we are running a marathon, an ironman, or a 100K race. We don't event know where the finish line is. It's a little...ok a LOT frustrating. Here's hoping we will get some answers soon regarding our next path.
Gotta run while we get a ventric out!
Rachel
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