Sunday, May 31, 2009
According to CB, Facebook, and personal emails, the votes for Roger are flying in! Keep 'em coming at www.richmondmom.com.
When Roger left Charlotte yesterday, she was fading into dreamland. Our date was very nice. Ruby Tuesday's for dinner and the movie, "UP!" which was far more thoughtful than I had anticipated. Not a little kid movie and the Pixar folks were correct when they said we might not want to take CJ to see it just yet. Some of the humor, sight gags, and puns were gut busting, though.
Fun day of private art classes and trainings at Romp n' Roll while Grandpa and Juanita watched Charlotte.
We're just finishing up here and we're headed down the MCV shortly.
Vintric (sp?) drain may be coming out soon (if not already).
More details as we learn them.
Saturday, May 30, 2009
Great Richmond Dad Contest
Roger has been nominated (by three people!) for the GREAT Richmond Dad contest on Richmondmom.com. He can win some great prizes and we all know he totally deserves it. This network helped our good friend Megan Blake become teh Great Richmond Mom about a month ago so I know you can do the same thing again. Please go to www.Richmondmom.com and enter your vote for Roger. You can also read some of the great nominations for over 90 dads (but still vote for Roger of course). Voting goes until June 13th. You do NOT have to live in Richmond to vote but you can only vote once so tell your friends and family to vote...spread the word.
Now I'm off to teach...
Friday, May 29, 2009
MRI Results and Update
Charlotte slept till 4 AM (that's 15 hours for anyone keeping track). They even tried to arouse her at midnight so she could eat something before she became NPO but she could not be budged.
She was entertained by Caillou and Frosty till her MRI at 7. They took her down and she came back at about 10 or so. Dr. Tye did check in with us about 9:30 but he said the scans weren't quite ready so I'm guessing he had to go back to clinic.
She came back pretty out of it from the anesthesia but she's been gradually coming back to arousal. She's had some milk and apple juice and a few cookies. We tried to get her interested in coloring but she seems only interested in the Wonder Pets right now.
Her tongue is still hanging out of her mouth. You can kind of understand her when she talks and she can sometimes put it in her mouth on command and talk normally but she still seems to have some motor difficulty holding over from the surgery. The general consensus is that it is a tardive dyskinesia resulting from a combination of meds, swelling, and the very act of the surgery. Everyone is expecting she should be better as time goes on. All of her other levels (blood counts, CBC, etc.) look great and hear drain is looking good too.
So that's all I have to report. I will let you know when I have more news.
First of all, I will direct your attention to the Caring Bridge thermometer at the right. Please notice that Charlotte's name has been un-bolded and only her first name is being used. Thanks to all of you who complained about their misleading fundraising tactics. It looks like although we did not get rid of the thermometer entirely, it was made "less misleading". For now, we will stay with Caring Bridge (happily) and much thanks to those of you who HAVE supported this website. We admit that it is a great service and has benefited us greatly these past few months.
Now on to the real news:
Charlotte is finally resting again and everything is looking great. Her ventric is draining nicely and very clear. Her speech is becoming slightly more clear and the tongue protrusion seems to be dissapating. Yay.
The MRI looks really good. NO cancer cells visible in the spine and I would say that more than half of what was left in the brain (maybe even close to 75-80% is gone. There is still a few spots including a section on the brainstem that he couldn't get from the angle of surgery that he took but it leaves a good amount for radiation to "throw the book at" (as Dr. Tye put it).
So now we just let her heal and will start the consultation process with oncology, radiation oncology, and the good folks in Houston for the next steps. More wait and see as far as options go but we are at least done with this milestone. Dr. Tye thinks the ventric might be able to come out by Sunday which means that if all goes well and she remains stable, we may get to go home sometime next week. All good news.
That's all I have to report for now.
Update from Roger:
Let me also add that I am satisfied with the adjustment of the thermometer. It is consistent across Caringbridge so now would be the time to donate to CB if you were holding off. Let them know how powerful we are!
Also, I really need to let you know about a very impressive young man we met in the MRI room before CJ's surgery. I already mentioned him before but left out names so the suits wouldn't get mad at me. But now I'm very happy to announce he has just started a CB site and everyone should visit and sign the guestbook.
His name is Nile Price (I spelled it correctly. No "s" on the end of "Nile.") Here's his site:
He's one of those kids you just naturally pull for. (I think his mother deserves just a little credit! :-)
Gotta go relieve Rachel. We're going on a date tomorrow! Gonna go see "Up!"
Thursday, May 28, 2009
A Lot of Adventure
The short story is: she hasn't slept (at all) since waking up from the surgery about 4 PM yesterday and she is definitely not talking as much. At one point, the neurosurgeon was thinking she was having seizures but the neurologist thinks it's probably more just swelling and the combination of meds. They had her on a different anti-seizure med than they used during the last two surgeries so they have since changed back to the original med. We are just in a waiting game. Her BP was a little elevated and she got some blood last night but otherwise her levels seem ok with everything.
I got very little sleep last night (some but in fits and spurts). The most I got was from about 6-8 this morning. We've had visits from Auntie Retta and Grandpa and Juanita are here now. I'll be going to work in a little bit. Yay for caffeine.
So to make a long story short, we just keep monitoring everything and make sure there aren't any erratic changes in the next little while. As the swelling goes down, we should see her return to a more "normal" level of everything.
She will have a full head and spine MRI tomorrow morning so we'll get lots more information then.
Now time to seek out some food for me...
After almost 21 hours of wakefulness and restlessness, Charlotte finally fell asleep about 1 PM. Dr. Tye had been by to see her and concurred that she probably was not having seizures but was more likely just feeling the effects of surgery, medication, etc. He was happy with her blood pressure and how she looked and just advised us to "hang in there".
I went home to refresh before work and managed to get in an hour or so nap on our new (and much needed) mattress. Hooray!
Then I met up with Roger at Romp n' Roll and took over the evening shift while he headed up to N. Va for an Uptown Gig. The work allowed me to at least clear my head a little and get some much-needed paperwork done.
Now back at the hospital and it seems that she has been asleep the ENTIRE time. Of course, I joked with my in-laws, "oh, so you kept her asleep so now she can be awake all night" but I have a feeling she will sleep for a while longer. Her BP level is great and everything else looks good. She has been resting peacefully. Of course she hasn't eaten much so I'm sure that she will wake up HUNGRY. Hopefully she will either wake up briefly before midnite and be able to eat a little or she'll just sleep straight on through till her MRI tomorrow. Tomorrow is a full head and spine MRI with and without contrast. She hasn't had one like this since her initial diagnosis. They will be checking her up and down (literally) for any signs of the tumor spreading as well as getting an idea of what we have left to fight.
More to report later. For now, I am going to seize the opportunity to get some rest.
Wednesday, May 27, 2009
We woke up at about 4:30am and got to the hospital before 6:00. The valet parking didn't open until 6:00 so we had to wait. In that time I could have parked in the garage, got validated parking, and been upstairs getting ready for the big day. But then I heard the road construction made it very difficult to manuver so it looks like we went the proper route after all.
As we got all ready for the MRI, Charlotte started getting antsy so we watched Caillou videos on the iPhone. Paid for itself several times over as far as I'm concerned.
When we went down to the MRI room, we weren't there long before the anesthesiolgist (woah! There's a $10 word!) showed up to administer the happy juice. At first she didn't want to let them at her central line so I distracted her with pics on the phone (more added value) while they hooked her up. In about 30 seconds, she got this very silly grin on her face and thought everything was extremely amusing!
Then they picked her up, took her in to the MRI room and she was gone. It all happened so fast I didn't get to give her a kiss but it was ok. Rompy, Mickey, and the hand-made pink and purple blanket (I can't remember who made it for her off the top of my head) are with her. Dug the Up! dog waits patiently with us here in the [SQUIRREL!!] 7th floor lounge.
By the way, CJ was very happy to tell everyone that she has TWO dogs now!
So after they took CJ, I found myself without a lot of direction since they sort of mentioned where I should go to wait only in passing and I was a little distracted. So I hung out there for a little while and talked to a young man and his mother waiting for an MRI. Very nice with the "Yes sir" and the "No, sir" and all that. Even with the tiff we're having with Caringbridge, I told them about CB and Hopecam.org. Turns out he is one of triplet boys and has a younger sister in Romp n' Roll's age range. So of course I gave mom my card. (Always workin' it)
So I eventually made my way down to the ground floor waiting room, got a bite to eat and settled in to wait. I promptly fell asleep. My buzzing phone woke me up - Auntie 'Retta was calling trying to find me. Ends up She, Grandpa, and Juanita Bonita were looking for me all over. They were just a floor above in the 1st floor waiting room.
I'm spoiled with the 7th floor so the other waiting rooms just wouldn't do. I pulled Loretta up with me and started the sign-in process early. I got the sign-in sheet filled out and saw plenty of folks who remember Charlotte including Heather from Child Life. They seem to be all ready for us.
CJ will be in room 614 of the PICU which means for now, kids can't visit and we have to space out the number of adults but after a day or so, we certainly want people to stop by. It can do nothing but good for her.
So now we're camped out, waiting for word. They are supposed to call anytime now with an update.
"Charlotte's Devon" is headed over to have lunch with us and Dean from Glen Allen Golf just called to let us know the total from the fun-raiser was $140! Thanks to all who came out.
Just heard from Nurse Janice in the OR. Charlotte is still in surgery and things are going as expected. If she's still in surgery at 2:00 they'll call with another update.
More details as they come up.
They were finishing up and might be done within a half an hour. Charlotte has been stable the entire time and everything looks good so far.
I don't think I'll be making it to Romp n' Roll this afternoon. Anyone in my Wednesday classes will be in the very capable hands of Miss Samantha. (She's been doing so well covering my classes lately, I think I might be losing some of my kiddies to her classes!)
Thanks to Devon for a very tasty lunch.
She is out of surgery and looking GREAT!
She is still a little loopy from the anesthesia but that's mostly making her act very funny more than anything else. She is gradually getting tubes, a-lines, ivs, etc. taken out. She is talking and moving all her limbs. Looks a little pale and will probably have a small transfusion but overall we can't complain.
Dr. Tye thinks he got a LOT of tumor. No word on percentage but he is reasonably confident that he got a very large amount. He said the pathway was really clear and he was able to get quite a bit. She will probably have an MRI tomorrow or Friday and they are going to aim for both head and spine to get a full picture.
Her tumor samples have been sent off to the MCV lab as well as a lot that will be going to Houston by Friday.
We have a nice room in the PICU...actually one of the ones we had last time with lots of space and a great, sunny view of the capitol and the governor's mansion.
I think that's all we have to report for now.
Thanks for all the prayers and support.
Rachel and Roger
Tuesday, May 26, 2009
Roller Coaster Days
These roller coaster days have to stop.
It's been up and down all day and I'm not one for that kind of emotional drama.
The bad: Our cat, Noah, must have gotten into a fight before we left and we didn't notice because when we got back, he had a big ole' ugly abcess on top of his head. I treated it with a little hydrogen peroxide and tried to keep it clean but he's a cat. You try holding him still. It was rather humorous to see him try to figure out where all that bubbling noise was coming from.
The good: Charlotte and I got to take Noah into the vet this morning on very shot notice (thanks Ashland Vet. Hospital) and while they cleaned his wound and set him up with some antibiotics, Charlotte was charming the people in the lobby. We met up with Dr. Beth Gill from Randolph-Macon College and her doggie, Frodo. It was nice to see her in civillian circumstances!
The bad: it took a long time to get all that done so we didn't have much time for lunch. I just popped us into Ashland Breakfast and Lunch and got CJ a grilled cheese sandwich and extra pickles. Chocolate milk of course.
The good: The food came quickly as did $30 more from Renee who has been selling bracelets/taking donations there for us. I think she also gave me another $40-$50 last time I was in.
The bad: We headed down south for Charlotte's portrait sitting at Commonwealth Photography (arranged by ASK I believe) and the all-over-bodyache that has been creeping back in really jumped on me and I felt like I was going to lose it for the first time in many weeks.
The good (I think): Charlotte promptly snapped me out of it when she dropped her chocolate milk cup in the back of my car and I nearly lost it in a different way when I almost wrecked trying to catch it as I saw it fall out of the corner of my eye in the rear view mirror. (wow, long sentence)
The bad: almost got lost going to photo session
The good: We made it on time and Charlotte was the best girl in the world! The moment we walked in, she was talking up a storm to the woman who greeted us, giving hugs, and telling anyone who would listen how much she love pink and purple, and following nearly every instruction the photographer gave her. She was wearing a brand new pink dress we got this weekend on the daddy/CJ shopping spree and the pictures I saw were drop dead adorable! The photographer was a real pro.
The bad: I began feeling bad again on the way up. Fortunately, I bowed to "Puff, The Magic Obelisk" (some call it the "Big Cigarette") as I passed Phillip Morris and I amused myself for a bit with that.
Still bad: When I dropped CJ off with mom at Romp n' Roll, I could tell Rachel is more drained than I am. I must admit, as upbeat as I tend to be, right now I'm just physically and emotionally beat. Mommy and I are going to need a date real soon. Good thing Grandpa and Juanita Bonita are almost here.
Very good: I got home and saw a pile of packages. Two of them were from Pixar Studios! They had sent a poster of "Cars" with a bunch of signatures of the folks out there, a "Dug" doll from UP and two Dug books. I figured they couldn't do the movie for us but it was incredibly kind of them to send the other stuff. Now go see it!
More good: There have been a rash of birthday parties, both at Romp n' Roll and elsewhere, where the family has asked for donations to CJ's account in lieu of presents. You know who you are and we really want to thank all of you! One party this weekend alone raised over $350!
Even more good: Just got word, the Bonitas have landed!
My analogy for the week is that we are reaching the top of a very tall, very jagged mountain and the surgery tomorrow is the peak. After that, I have to believe it's all down hill; very bumpy, no kneepads or helmet, and big cliffs on either side, I know, but down hill nonetheless.
My baby girl has bounced back so strongly from everything thrown at her, there is no doubt in my mind she can do it again. I can only hope Mom and Dad will do the same. We plan to lean heavily on all of you, if only in spirit. Hope you don't mind.
Monday, May 25, 2009
Good Couple of Days
The return trip home was easy and breezy. Another Houston Ground Angel (his name was Ty) shuttled us to the airport. He had his own interesting story and was quite the conversationalist on the quick trip to the airport.
Charlotte continued to get SO much attention during and after the flights. We had one good samaritan trade seats with us when we realized that our seats on the Atlanta-Richmond flight were not together. The flight attendants (yet again) spoiled her with cookies and other goodies. It was also interesting that since she was wearing her minnie mouse hat and carrying Mickey, everyone from the Atlanta flight and in the Richmond airport thought we were coming straight from Disney World....not yet....not yet...
We pretty much collapsed Saturday night and then actually made it to church on Sunday. It was so good to see our friends and Charlotte had a great time in the nursery (as usual). The rest of our day was spent working on domestic stuff. Roger and Charlotte took a shopping trip to Kohl's where they got some great deals on new running shoes for Roger and a few spring/summer outfits for the princess. She should be well outfitted for summer now, I think.
I stayed at home and proceeded to tackle the house room by room. It had become quite the disaster area recently with all the coming and going and none of the "domesticity" that we used to enjoy. Finally, two trash bags , two loads of laundry, lots of recycling, and a whole pile for the Goodwill store later, we have some restored order in the house.
To add to it, we are doing a bit of upgrading in the living room. Our friend Meredith came over last week and gave some advice on rearranging some furniniture to better suit our growing little girl. The table is on backorder, but once it arrives we will have a new workspace for her art projects as well as some storage ideas for the wall. Thanks for the advice, Meredith! If you ever need design advice, you must give her a call. She is practical and stylish all at the same time!
While giving shout-outs to Meredith, I must also thank her husband Mitch and the other folks who helped move our new piano. My other dear friend Katherine gave us a lovely upright piano. It is currently at Kolbey's house and I'm sure will be a treasured tool for our home. We have had an electronic piano since we got married so this is our first "real" piano. Can't wait till Charlotte gets to try some piano lessons!
At the moment, Charlotte is at a playdate with her Montessori friends.
All seems set for Charlotte's surgery first thing Wednesday morning. We will also be conferring with her physicians regarding the consultation we received in Houston. Roger's dad and Juanita should be here sometime tomorrow.
Many have asked if we need anything in the upcoming few days/weeks/months. We will be sure to update you if there are any tangible needs. I have a feeling that most domestic stuff will be covered by the near constant lineup of family and friends who plan to be here in the coming weeks. We are also VERY set in the toy, book, sticker, stuffed animal department. Your generosity over the past few months have left us wanting for NOTHING so please resist the urge to buy the princess any gifts. (I know how tempting it is...she is such a cutie). I will certainly be taking some of her favorite comfort items and activities to the hospital during her recovery and I think she will be set. I hope that this request does not make me sound ungrateful. We are MORE than thankful for all the gifts which have come our way. I just want everyone to know that right now, your prayers and postive vibes are probably the most important gift that you can send our way.
We are at a point where the freezer is less than half-full so if someone feels the need to make us a meal (especially one that is freeze-able), we will happily accept. We are not in desperate need but I know that sometimes folks find it an easy way to help out. It sure does come in handy when we are trying to keep everything together. We just had a tortilla bake last night that was YUMMY (thanks Miss Parker!). Headed over to Granny Dot's for dinner tonight as well.
I guess that's all for now. Hope everyone has enjoyed their long weekend.
Friday, May 22, 2009
Letter to Caringbridge and Update from Houston
Thank you for your reply to my email concerning your "thermometer" on the website.
I have no problem with Caringbridge fundraising and as I've said, we and our support network have donated and (until recently) planned to continue our support past the end of Charlotte's treatment. My problem is with the use of Charlotte's name as if the donation will be going to help her directly. It is very misleading. This has already been a problem as a friend of ours clicked on the link and sent a donation to Caringbridge thinking it was going to Charlotte. He is not happy and several of our fellow Caringbridge users aren't either. We've heard that other users have complained and have also been refused by you. Not the way to garner loyalty.
I will make my request only once more, please take Charlotte's name off of the thermometer ad. Paying or not paying a fee for the service is not an issue for us. Having our name associated with an organization with questionable ethics is. The thermometer idea is great. Just take the names off of it and make it clear that it's for Caringbridge and not the user. It's especially confusing when the users (like us) are frequently in the middle of fundraising themselves.
In case you didn't notice, we have over 90,000 hits from about 700 independent viewers. How many more people are following other patients as well? I would say it's very bad business to piss off that many people at once.
I've been shouting the praises of CB all over the place. I even told someone about it this morning so I have not given up on you yet. Do right by us and it could be very good for you. Refuse us, and our friends, again and we're gone. Your choice. Personally, I really like CB and don't want to leave but I have discussed it with my family and we will.
Instead of forcing this on us, why not enlist our help? Obvoiusly, there is a great deal of organizational experience here.
Don't hate them yet. We'll give them a chance to work with us. CJ update later!
Alright, here it is now, your moment of Zen...
I will warn you that I have had a very long day (and two margaritas) so I apologize in advance for any typos or "crazy talk".
We made it to and through the behemoth that IS MD Anderson fairly well. The shuttle got us to the hospital without much ado and with the help of some handy greeters, we found our way to the children's clinic.
WOW! It's quite an operation. Similar in scope to the ASK clinic at MCV but even more impressive. There was a LARGE playroom and lots of books to keep CJ more than amused. While we were there, the music therapist stopped in for a session with the kids. It was well attended and Charlotte joined in the fun after some encouragement. She even got in a request for Frosty the Snowman.
The receptionists and all the staff just LOVED her bald chicks rock shirt that she wore proudly today. She made fast friends with everyone and charmed the pants off of just about everyone in breathing distance. That's our girl.
I filled out oodles of paperwork, summarizing for the umpteenth time Charlotte's birth history, health history, developmental milestones, etc. Seriously...can we not get electronic records that automatically transfer this stuff from doctor to doctor???
I also dropped a check for $2500 for the evaluation. Turns out we are out of network here in Houston so we will start paying down that $8K deductible. Thanks to the fundraisers...we couldn't be here without you!
Our appointment for paperwork was at 9:30 and our appointment for Dr. Wolff was 10:30. We made it in to see the doc about 11 am (not bad for getting squeezed in at the last minute). Dr. Wolff came in, met us, greeted Charlotte, and got the "low down" on her history and scans. He explained the procedure with the evaluation of her tumor and how the process works and then decided to send us immediately over to see Dr. Brown in the research area of the medical school. He told us to wait and that he would get us directions and then he promptly left the building...
We were kind of left in limbo land for a while but eventually got a medical data specialist to walk us over to the medical school herself (it was about a four block walk). Meanwhile, we got to hear her interesting story: she was living in New Orleans during Katrina and ended up needing to evacuate. Interestingly (still..) she stayed during the hurricane at Nicolas Cage's house (a friend of a friend) in New Orleans and then ended up borrowing his car to get out of the city since their cars were flooded out. Crazy! She ended up in Houston and hasn't been back since.
So we met with Dr. Robert Brown who is a researcher at the University of Texas Medical School. He is also a graduate of MCV (go figure!). He shared a few journal articles which he has published on this process. The official term is morphoproteomics (for any of you interested in googling it). The science behind it is pretty much beyond my capability but basically this is a VERY new and VERY experimental process used for cancers and other diseases for which typical therapy is not successful. According to Dr. Wolff, only about a dozen people have been through this process before Charlotte and maybe only one her age. The doctor will look at the tumor markers under a microscope and analyze the life cycle of the tumor. By this process, they will recommend directions for therapy which may include drugs that are off-label (i.e. they are not typically used for cancer treatment) and/or drugs that may not have been tested on children. All the drugs are FDA approved but they may not have been through clinical trials with kids.
SOOO...we basically told Dr. Brown that we wanted to move forward with things. He gave us things to ask for (more tumor slides after Charlotte's next surgery) and we headed back towards MD Anderson for lunch. We ended up at one of the many eating establishments available on this campus where there was (surprise) a Chick-Fil-A! Hooray.
After lunch, we went back up to the clinic. We weren't exactly sure when Dr. Wolff would see us again but we knew that he was expected back from a lecture about 2 PM. Charlotte resumed her playing in the playroom and we met volunteers and child life folks who helped give her (and us) some extra TLC. The highlight of the day was getting to see this girl named Bailey ring the bell for the end of her treatment. Not sure of the diagnosis but I'm guessing Leukemia or Lymphoma. She was another cool bald chick and looked to be in her mid to late teens. There was a big announcement made as Bailey came out to ring the big bell for the end of her treatment. Charlotte walked right up to see the events and even ran up to Bailey and gave her a big hug. There wasn't a dry eye in the house. Ok, well, I was bawling!!
Then we waited...and waited...and waited. Finally about 4 (or so) we got back into the clinic again and we met with one of the other oncologists on staff. He finished taking Charlotte's health history and THEN we met with Dr. Wolff again. He helped talk us through the next steps as we discussed possible options.
We learned that there are certain chemotherapy drugs that she may be able to take very soon after surgery (depending, of course, on how the surgery plays out).
We also discussed radiation options (whole head and spine vs. localized and proton beam radiation which is only available at about three places in the country...MD Anderson is one). No decisions made today, of course. All of this depends on how the surgery plays out, how the initial rounds of chemo go, and what the morphogenesis results tell us.
But here is what was made very clear to Roger and to me: Charlotte has a very dangerous, very aggressive tumor that is (frustratingly) not responding to many of the typical therapies. We are embarking on pretty much unexplored territory when it comes to therapy options but this is pretty much all we have. There is much danger of the cancer metastisizing (into her spinal fluid or other areas of the brain) and there is much danger of the cancer continuing to grow.
Slight segueway...there is an episode of the Simpsons where Homer actually tries to gain weight so he can go on disability and work from home. In his attempt to gain weight, he goes on a super fat diet and takes the family along with him. In a scene where Homer tries to get the kids to eat fat-upon-fat, Bart responds "Dad, my heart hurts!" and Homer replies, "Butter your bacon!!!"
Well here we are....my heart hurts. And not from the buttering of the bacon. Over the last few weeks, we keep digging deeper into this process and I continue to realize how grave her conditino is. The fact that her tumor is not dying despite the poison we put in her body. The very fact that we are having to resort to experimental, aggressive, and potentially dangerous medicines to keep her alive. That makes my heart hurt.
I feel this weight in my chest that won't go away and I am genuinely sad. I fought back many tears today (and a few slipped out anyway). I know that there is still hope. I know we are not at the end of the line. But I am not nearly the picture of optimism that I felt about 3 months ago. This is hard stuff and it will take me a while to process this.
Ladies and gentlemen, the eye of the hurricane is getting ready to pass. Get ready for the rest of that oncoming storm. We can't prepare for much because EVERYTHING...every step in the next part of our journey....hangs in the balance of the step that comes before. Her chemo treatment will be determined by how well she responds to the surgery. And radiation will be determined by the success of the surgery and the results of the analysis. And all of the experimental stuff will hinge on how everything else plays out. I can't plan ANYTHING anymore...
So, just to finish the story of the day: we FINALLY left the hospital at about 6:10 PM (after being there since before 9 AM) and the hotel shuttle never came to pick us up (despite 3 telephone calls) so we eventually decided to hoof it the 1/2 mile or so back to the hotel on our own. Not a bad walk and thank goodness for Google maps on our phones.
Just so we don't end on a downer, we did have a lovely evening with Roger's Uncle Tom. We went to dinner for Tex Mex (Roger and I had been craving fish tacos and, yes, Margaritas). Charlotte was a doll and was serenaded by the mariachi band. She really loved it when they played Old McDonald!!
We will leave tomorrow and journey back to Virginia. More to update later.
Thursday, May 21, 2009
We are Here in Houston
The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!
Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.
I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.
When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!
We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.
Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.
So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:
I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....
I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)
So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.
When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.
I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.
In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)
ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.
I think that's all we have to report for now.
Wednesday, May 20, 2009
0. There was a green old navy jacket (adult size xs) left at the Head Shaving Party @ Romp n' Roll in April. If it belongs to you, please come by or call to claim it. It's really cute and I would take it but there's NO WAY I'm an XS :-)
1. Mini Golf/Batting Cages/Driving Range TONIGHT 7-10 PM at Glen Allen Golf on US1 to benefit Charlotte.
2. The Five Below event @ VCC seemed to be a success and Charlotte's story has really touched on the people there SO they are repeating the event for the next TWO weekends. Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes (sp?).
3. Don't forget about the Brain Tumor Awareness Benefit Concert with Susan Greenbaum and Cheryl Fare at Ashland Coffee and Tea Saturday (5/23) from 3-6 PM. The event itself does not benefit Charlotte directly but it is a great cause with great music AND there will be a 50/50 raffle for Charlotte as well. Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it.
4. A shout-out to Christy, Wendy, and Torrie for helping Roger with the FACES event at Virginia Crossings tonight.
5. A HUGE shout-out to Jackie Plank for continuing the fundraising efforts.
6. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors (Pampered Chef, Arbonne, Longaberger Baskets, etc.) selling their wares and donating a portion of the proceeds to Charlotte. Start your Christmas shopping early! Also, I think a Silent Auction is in the works.
With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" (they will cover the visit but not the tumor evaluation since that is considered experimental). We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates. Given that we do not know right now how many stem cell transplants/rounds of high dose chemo she will need and/or whether this will go on past this calendar year (since our deductible is for the calendar year), this will probably increase our out-of-pocket medical costs to anywhere between $40-100K. We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us...
That is all I have to report. I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! Whew!
First off and VERY IMPORTANT, the little thermometer to the right isn't our idea. It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well. Might be the last one I send if they keep that kind of crap up
Be that as it may, today was a HUGE day! First off, I woke up, completely alert, at 4AM this morning. No idea why.
Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston ("Houston, Texas?!?")
This next event illustrated Cerisa's post brilliantly: While headed home, I asked Charlotte where she wanted to have lunch and she said the ever wonderful, "Chick-fil-a." When I said, OK, we're going to Chick-fil-a, she immediately said, "People eat there seven times a day!" If you don't know to what that refers, immediately open a new browser tab/window and go here:
No, really. Go do that now...
Hmmm dee dum dummm
OK so we get to CFA and we meet Mommy there. We had a great lunch, CJ had ice cream with her lunch, and Mommy and I switched cars and Charlotte.
I then went to VA Crossings Resort to set up the Romp n' Roll stuff for the FACES of Virginia meeting. I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions.
I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. I figured that's OK since I'll have my star volunteers, Torrie (Too Tall Torrie) Heathcoat and Christy Yeadon MAN Am I glad they were there! Couldn't have done this without them. Thanks, ladies!
After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all.
So we made a lot of FACES parents very happy to be able to have a nice, relatively quiet dinner. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is. Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's why I dig this FACES of Virginia Families organization so much. That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Heck! Boss woman, Cate Neubanks is even going to yoga with us on June 6th.
I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser! I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can.
We still don't have final numbers from the burrito eating contest at Qdoba. Still working on it.
Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase.
Thanks for all your well wishes for the safe trip. See you in Houston.
p.s. We got the ReeseStrong doll and will be taking it to Houston.
Monday, May 18, 2009
Cancer is a Hurricane
Cancer is a hurricane.
It comes on strong and weaves a path of destruction. You can fight it. You can batten down the hatches. You can even move away from areas more likely to be hit by hurricanes (like Florida) to somewhere like...oh...Kansas. But then, of course, you have to worry about tornadoes and dust storms. Heck, they've even had hurricanes in Canada. And England. It's always something...
With some hurricanes, you have a lot of warning. You can see it coming and have plenty of time to try to minimize the effects by boarding up the windows, trimming the trees, or evacuating altogether. With other hurricanes, it seems to develop so suddenly, you barely have time to grab your raincoat and duck for cover. And yet, you live where hurricanes happen so you know that they can strike. Anytime. Anywhere. [Ok, they're more likely during hurricane season but you get my drift...]
Some hurricanes are small. Category one. Tropical storms, even. They are still dangerous. They're a pain in the ass. Localized damage. A tree down here or there, the power goes out for a little while, school is closed. There is preparation and clean up and all of the standard procedures. But they are far less to fear than the Category Five. Those are definitely going to cause some serious destruction. Those are the ones you want to avoid. The power will be out for days (weeks) at a time. Your home may be destroyed or severely damaged. You could lose everything. Including your life. And sometimes when the hurricane strikes, you're still not sure (until it's passed) whether you were in a category three or a four. It doesn't really matter. When you're in the middle of the hurricane, it's scary whether the wind is blowing at 120 or 150 mph.
And in the middle of that hurricane is an eye. The eye is deceptive. In the eye, there is no wind. No rain. No tornadoes. Everything is calm and clear. You may even hear the birds come out. In the days before satellites and radar, people would step out of their homes during the eye of the hurricane only to be taken by surprise by the rest of the oncoming storm.
Because eventually, the eye passes. Not only are you left with the rest of the storm, but sometimes the most severe, most damaging, most dangerous part of thes storm is the part that follows the eye. Ironically, the most dangerous storms usually have the largest, best defined eye wall.
So here we are. In the eye of the hurricane. This storm has been brewing and raging in our little family for almost four months. We didn't have a lot of warning but we called out the National Guard and they're doing the best that they can. So are we. We have been braving this storm and doing everything we can to fight it. Some days we did better than others.
But for the last week, things have been calm. We have a direction. We have a task. We haven't spent the night in a hospital in almost three weeks (hooray). We haven't had to visit the doctor's office or therapy appointments in over a week (hooray). We've actually resumed a schedule that most closely resembles our old "normal" schedule, doing things that we haven't done in almost four months. Charlotte is happy and eating and growing and smiling and making us smile.
And yet that storm is looming on the horizon. The other side of that hurricane is getting ready to hit us and I'm not sure how long it's going to last. I am fearful of the damage that will be caused. I am fearful of the unknown. I can't stop thinking that the process will start all over again when she has surgery again next week. There will be danger. There will be risk. There will be trauma. It just comes with the territory. And then there will be the long clean up. We will need to assess the damage, look towards rehab, get a new direction for cancer treatment....and the long process begins again.
I guess this sounds very morbid and sad. I should be enjoying the "good parts". I should cherish these moments where we get to have a life again, however brief that may be.
And I do.
But it is difficult to look at that precious little girl and realize that while she laughs and tickles you and sings nursery rhymes and reads books to herself and talks about going to "Houston, Texas???" there is this ugly, dangerous, cancerous tumor growing inside of her brain. This insidious thing that refuses to be stopped by the traditional avenues is testing modern science...and my ability to remain optimistic.
I will continue to hope and believe. I will strive to look on the bright side. I will breathe while I'm still in the eye of this big hurricane. But I also stand ready because the storm clouds are building again.
So those are my thoughts for this evening. Take them or leave them. I must get some sleep for the busy day ahead. I continue to take deep breaths and live one day at a time. I think I see a Hurricane Party in my future (yeah, you Floridians out there know what I'm talkin' about!!!) Who's making the Sangria?
Sunday, May 17, 2009
Rachel is home now and pestering me needlessly.
Rachel wanted me to let you all know how needlessly I'm suffering.
So anyway, kudos time!!!
Chris from Hill Electric came in and volunteered his time to change the very high florescent lights in the gym since we don't have a ladder high enough. There's so much more light in the gym, we don't even need the big buzzy round lights. Big thanks to him.
Today, we told Charlotte that we are going on a trip this week to go see some doctors in Houston. She asked, "Houston, Texas?" She doesn't miss a beat.
Events coming up:
May 20th - Glen Allen Golf Fun-raiser (Rescheduled from earlier) on Wed, 7-10pm
FACES meeting at Virginia Crossings Starting at 7pm (still need volunteers)
May 21-23 - Houston Trip! Probably get to see Uncle Tom.
I did something impulsive and left a message on Andrew Stanton's (yes, THE Andrew Stanton from Pixar) voicemail explaining her situation and asking if there was any way Charlotte could see the new movie "Up!" It comes out the 29th and her surgery is scheduled for the 27th so I just thought I'd take a stab and see if we could work something out.
(Roger is going to stab Rachel in the head for editing without an invitation!)
Besides spelling corrections, she has nothing to add. :-)
That is all. You may go now.
Saturday, May 16, 2009
Continuing to be Very Busy!
Roger was up in Caroline County today promoting some of our Romp n' Roll To Go activities up there.
After Romp n' Roll, Charlotte and I ran many errands (PetSmart, Five Below, Ukrops). I don't know about her but I'm ready for a nap!
Speaking of Five Below, don't forget to stop by there today or tomorrow and stock up on your bouncy balls, pool noodles, stickers, etc. If you've never been, it's like an "upscale" dollar store with lots of discount stuff. The one at VCC (next to Best Buy) is where the Charlotte fundraiser is. 10% of sales go to Charlotte.
Now we are just counting down and gearing up for our trip to Houston next week. Everything seems to be going according to plan.
I think Roger is still looking for a few volunteers for Wednesday evening for the FACES event at Virginia Crossings (see previous journal post). Please contact him directly if you can help.
Enjoy your weekend!
Friday, May 15, 2009
Help with a F.A.C.E.S. of Virginia Event
Roger here. We have an event coming up on Wednesday for which we need volunteers.
The F.A.C.E.s of Virginia (the foster family/adoption support group I've mentioned before) is having a meeting at Virgina Crossings Resort and Romp n' Roll is donating an evening of Romp n' Roll To Go. We set this in the calendar a while ago and with changes in our schedule and the RNR Spring schedule, I can 't be at the entire event.
I need at least two people to oversee rooms with play areas. There will also be a room with board games for older children which we've been asked to providewith an adult.
I will set everything up during the day and come back after my classes to finish out the event and tear it all down
All you need to do is make sure the children don't bleed all over each other. (JOKE!)
Please call my cell phone (540) 220-4922 to confirm. If we get more than the alloted number of volunteers, then great. If for no other reason than to see what an awsome organization F.A.C.E.s of Virginia is. (Poor grammar)
This also the evening of the Glen Allen Golf fun raiser. After I get there to tear down, you should have plenty of time to go to that.
Time for FRIDAY MAYHEM!!!
Thursday, May 14, 2009
We are Staying Busy
We just found out that the Shopping Day for Charlotte at Five Below (at VCC) has been EXTENDED to Sunday May 17th as well! We prefer that you take a "Shopping for Charlotte" flyer (we have lots at Romp n' Roll) but you can also tell them that you are shopping on behalf of Charlotte and they should credit your sale.
What a great day yesterday! Charlotte went with us to Romp n' Roll. We haven't had a day like that since before January. She participated in classes that we taught and then went to Princess class with 6 other girls. She was dressed in her Snow White costume complete with wig (for those of you who have seen last Halloween's photos, you know the look). Then we had lunch at Chic-Fil-A (so yummy), Mommy got her new iphone (yay!) and we went home for more fun.
I got to have my own "adult" playdate with a friend at Chili's yesterday afternoon while Uncle Kolbey played with Charlotte. Then it was home for dinner and LOST.
I couldn't have asked for a better day and I think Charlotte had a good time as well.
Today it's off to Virginia Blood Services. They are going to test my blood to make sure I can donate for her surgery in 2 weeks. We did not have time to do this before the last surgeries but can now. She and I have the same blood type so I can actually donate and designate the blood directly for her. There's a small fee but we think it's worth it. This is a good chance to remind everyone though: if you are eligible and able to give blood, please do so regularly. Blood donations are ALWAYS needed in Virginia and you will be helping kids (like Charlotte) and adults in need by giving regularly.
That's my PSA for the day.
Then we are heading over to "montessori house" for a lunch date. I know Charlotte will be excited to see her friends. Gotta go get ready for the day...
Tuesday, May 12, 2009
What a Good Day!
Charlotte had a great day with visits from Wyatt and Heather, walks around the neighborhood, lots of exercising, and lots of eating.
We have a plan and an itinerary. We will be flying on Air Tran out to Houston on May 21st and returning on May 23rd. Our meeting at the clinic is on May 22nd. Thanks to our wonderful network of resources, we have learned about shuttles from the airport to the hotels/hospital area (hence no need for a rental car) as well as some good hotel accomodations for our stay.
Also, thanks to our wonderful staff at Romp n' Roll (as well as help from a few of the other Romp n' Rollers in the Richmond area), I think we've just about got coverage at the store covered while we are away.
We are still planning on surgery on the 27th. My mom leaves tomorrow to go back to Florida (bye Granny!). Roger's dad (Grandpa) and Juanita Bonita will be back her on the 26th in preparation for her surgery and we're getting some other "ducks in a row" for the weeks to come.
It's nice when the stars seem to align.
On a not so good note, it looks like the insurance appeals are not going to go as hoped. After our second appeal letter, Humana continues to maintain that we are well within our rights to choose MCV and they are well within THEIR rights to charge us an out-of-network rate for choosing MCV. End of story. The short answer is that I will follow up with our rep from the insurance commission and possibly make one final appeal through our delegate representative who has been following the case to see if he has any "pull" but I think the 8-ball is telling us "all signs point to NO".
Thank goodness to those of you who have led the charge on those fundraisers because we are gonna need them!!
Speaking of which, it looks like the Glen Allen Golf event has been rescheduled for next Wednesday (May 20th) from 7-10 PM. Mini-golf, batting cages, and driving range. Pray for sunshine and come out to see us off to Houston!
We also have the shopping events this weekend. Saturday 5/16: Five-Below (at VCC). You need to bring a flyer. We have LOTS of flyers at Romp n' Roll. 10% goes to Charlotte so stock up on your summer pool noodles, bouncy balls, and other un-necessary junk....
THEN Sunday 5/17 at Everything But Water (bathing suits, etc.) in the Short Pump Mall. I don't know if you need a flyer of some kind for this but 10-15% should go to Charlotte and I understand that there will be a chick-fil-a wheel with prizes and opportunities to help there as well (with food???). Thanks to Torrie for arranging this.
It looks like we will be getting back into town after the Brain Tumor Awareness concert at Ashland Coffee and Tea (featuring Susan Greenbaum and Cheryl Fare). I am SO sorry that we will miss this because I know it will be great. Please come out and support the event for us! There will be a 50/50 raffle for Charlotte and a chance to hear some great music.
That is all I have to say for now. Rumor has it Charlotte will be making an appearance at a Princess class tomorrow. And I get to watch the season finale of LOST tomorrow night. And did I mention that I get my new iphone tomorrow? Should be a good day....Signing off...
Monday, May 11, 2009
Something of a Plan, Finally
Hope everyone had a great Mother's Day. We sure did. We opened Romp n' Roll up for open gym and let the kids have a good time. The crowd was pretty good.
Charlotte's numbers have been so good lately that we have come off the germophobe box which is great because I'm no good at being a germophobe. We even had visitors from St. James The Less. The Shiffletts came by with a Mother's Day present from the Sunday school class. Annabel (or "Annablell" as Charlotte calls her) is one of CJ's favorite friends and they had a lot of fun tickling Annabell's sister Piper on the knees!
We also took her down to Romp n' Roll to play and met up with The Hayes family from Montessori House. Anja is another of CJ's favs.
We then went to Panera with Granny and Uncle Kolby (walked from RNR in fact!) for Mother's Day dinner and then to Coldstone for dessert!
When we came home, I gave the princess a bath and settled in for the evening. A little bedtime drama having to do with a thrown book and not being tired but nothing too bad.
Overall, it was a very nice Mother's Day and as we've stated in various places, seemingly extra special.
The history of Mother's Day came up in conversation and after a little online research (We're kinda geeks that way), we found some very interesting information. I always went with the prevailing wisdom that it was just a fake holiday invented by Hallmark to sell cards. "NOT SO LIZZARD BREATH!" (there's your trivia question for the day) Turns out it's more of a peace movement/community organizing event with various religious roots. Here's one website that chronicles just a bit if the history.
As for the more serious side of things, no final word yet on anything.
Feel left hanging? Us too. We're at that stage again where we really can't plan anything until we know more.
We'll let you all know as soon as we do.
OK, so we finally have something of a plan. And as usual, it looks very little like what we were hinting at last time I wrote.
After a good amount of back and forth between Rachel and Dr. Tye, it was determined that the MD Anderson team could, indeed, use the samples Dr. Tye removed during Charlotte's 2nd surgery as well as the last MRI scan so she doesn't have to have surgery this time until after we go to Houston.
That makes flying much more attractive as we won't be worrying about how she is going to handle travelling a week after a major brain operation although I was quite looking forward to the road trip in Grandpa's camping truck.
We wanted to see about Angel Flight but they would only let one parent go and we actually found a halfway decent rate on Airtran.
We've had some very generous donations come in recently which will take care of our travel expenses. Another reason to thank everyone!
That makes the schedule look something like this:
Thursday, May 21: Fly from Richmond to Houston
Friday, May 22: Meet with MD Anderson Drs.
Saturday, May 23: Fly back to Richmond
Tuesday, May 26: Check into MCV
Wednesday, May 27: Surgery #3
We'll probably be in the the hospital at least a week post-op recovering. Time to stock up on Morphine, Tylenol, and Dora videos!
We're hoping to get various family members here to help with things starting the 27th (maybe the 26th) including Grandpa and Juanita, Aunt Phyllis, Granny (again but this time WITH Grumps...I mean Gramps!), Anyone else who wants to drop in.
The Staff at Romp n' Roll has been forwarned that they may be asked to do some extra stuff (as if they haven't been asked before!) I'm confident, we will be able to work something out.
Another note about our staff at RNR. Throughout this whole experience, they have been the best staff any business owners could possibly have any right to hope for. They've come in at odd times, covered myriad classes, volunteered hours of work over and over and kept the business going when we were balls of stressed out goo! They are more perfect examples of how we couldn't do it without our support network.
We apologize to our customers for the revolving instructors but at least the replacements seem to be doing a great job.
Other news: The Glen Allen Golf Fun-raiser has been tentatively moved to Wednesday, May 20th.
Big new Fun-raiser in the works! Dr. Anna Madland of Atlee Chiropractic and Bill Roberts at WHAN 1430am Radio and I did a little mind melding and hashed out a little more of the "Yoga-thon" idea. It will be 100 "yoga-ists" doing 100 minutes of yoga And we would like to try doing this during the Strawberry Faire in Ashland on Saturday, June 6th. People would sponsor yoga-ists for $1.00 per minute and if every person on a mat got every minute sponsored, that would make $10,000 raised! So that's our goal. "Can we build it? Yes we can!" (Who knew President Obama liked Bob The Builder?
We want to get it going relatively early in the morning to avoid the heat so it will probably start 8:30 or 9:00am. We need 10 instructors and 100 (or more!) people to do the yoga. I know with our network, Dr. Anna's, and the Greater Ashland listening and reading public, we should have next to no trouble getting it together.
After the event, stick around for one of the coolest days of the year.
As per usual, Jackie Plank is knee deep in this one as well. Contact her at firstname.lastname@example.org to sign up or to sponsor a minute. Day-of sponsorships welcome if there is space. So please spread the word!
Saturday, May 9, 2009
Another Busy Day
First of all, we got a substitute Mickey and I understand more are on the way (that way we'll NEVER run out!!). Knowing our luck, by the time the new ones arrive, she will have a new "obsession".
Also, Roger now has the webcam with Skype hooked up so Charlotte can talk/meet with her preschool friends. If anyone else has Skype connections, please let us know. We would love to schedule some "Charlotte talk times" with you.
Thank you to everyone who has written or who we have seen in the last few days and offered their thoughts and concerns. We really appreciate it. As we have said to many people who have asked about Charlotte, she is doing great. Really, reallly great. That is part of what makes this so difficult. To look at her, you would still never really know (except for the bald head and the sometimes awkward motor stuff) that she had this tumor growing inside her. As usual, Roger and I are suffering more than her through a lot of this.
After some consideration, Roger and I have decided that we do not need to pursue a second opinion on the surgery. We trust Dr. Tye and his team and know that this is a necessary next step regardless of how we proceed with the oncology side of things. We will be talking with his office first thing on Monday to determine when exactly surgery will happen. It may be soon.
We still have some questions about the trip to Houston and MD Anderson. Mainly the questions revolve around "how" not "if". Mainly, we are concerned that the timeline the doctor has given us may involve travel sooner than we think Charlotte will be ready post-surgery so we just have some more questions to ask. Our initial thought is that we will take Charlotte to Tennesse to meet up with Roger's dad and from there we will take his RV to Houston. This will allow us to keep Charlotte as comfortable as possible on what will be a very long road trip. Others have mentioned Angel Flights and we are investigating that as well. There is a question about whether air travel will be a possibility so soon after brain surgery.
Anyway, we will report more as we know details. My mom is still planning to leave on Wednesday (the 13th) so we will let you know if we need help in the coming weeks.
Today was a busy day with the Chic-Fil-A Cow Drop. The weather cooperated and it was good to see many romp n' roll friends as well as meet some (hopefully) new customers. Roger is up in Maryland performing with Uptown Vocal Jazz Quartet at the Mainstay. He should be back late tonight.
I'm looking forward to a relaxing evening and day tomorrow. Happy Mother's Day to all the moms out there (especially mine!)
Reminder: Open Gym at Romp n' Roll tomorrow from 10 AM-4 PM for all those dads that need to give mom a break...
Enjoy the rest of your weekend.
Charlotte has asked to type a message so I'm going to let her type here:
Friday, May 8, 2009
A Lot to Consider
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.
The good news is that her blood counts look GREAT. Everything has come up where it needs to be.
Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.
On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).
Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.
Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.
We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.
Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.
Monday, May 4, 2009
For our good friends the Klauers: This Tuesday (tomorrow) is ReeseStrong Day at the Riverbound Cafe in Mechanicsville! A percentage of all proceeds for the day (breakfast, lunch and dinner) will go to the ReeseStrong fund! Come out and eat!
Also: Next Fundraiser at Glen Allen Golf (on US1) from 7 PM-10 PM on Wednesday 5/6. Mini-golf, batting cages, and driving range! Come out for the fun and a portion of the proceeds will go to Charlotte.
Today was a nice day "off" from Romp n' Roll for me. Roger and I did go back to the clinic today to meet with Dr. Khan. We reviewed the scans again and got to talk more about possibilities for the next step(s). We still don't have any solid directions, but we will meet with Dr. Tye (neurosurgery) and Dr. Chung (radiologic oncology) on Friday along with Dr. Khan to discuss options and possible side effects of these different paths.
Meanwhile, Charlotte has had a GREAT day, complete with a much needed POOP (yes, you needed to know that).
Then we had a wonderful surprise visitor! (Pictures to follow). Our good friend Carolyn Peart has an "in" with a certain character named Mary Poppins. Charlotte wrote a letter to Mary Poppins a few weeks ago and sent it up the chimney (watch the movie). In the letter, she asked Mary Poppins to visit her. Well, Mary came for a visit today complete with her magic bag and a full tea set with scones and "tea". We had a lovely time visiting with her. Mom, Granny, and Charlotte all enjoyed her company and it was so much fun. Charlotte was a delight. The best party was putting the jelly on the scone. Then she forgot about the scone entirely and just decided to eat the jelly straight from the bowl with her fingers! Emily Post may have had something to say about it but Mary Poppins thought it was just fine. We sang songs from Mary Poppins' movie ("Let's Go Fly a Kite") as well as some of Charlotte's other favorites (Frosty the Snowman). Charlotte also loved showing Mary Poppins her "new" room and talking about her pets.
After this lovely visit, we ran a few errands with Granny and now she is at home working on a sticker picture.
It seems strange to think about our new directions and timeline. It is very difficult for me to wrap my brain around it until I have some more answers. Until then, we will enjoy our rest at home with no doctor's appointments or therapy appointments till Friday (oh, goodness, what will we do with ourselves????).
I promise to upload the Mary Poppins pictures as soon as Roger brings the camera back!
An Update from Roger
A very good day for Charlotte.
We all slept in and got up around 8. Mommy did some cleaning, daddy, tried to catch up on emails and did a little laundry. Paster Ed from St. James The Less came over for a visit and CJ seem genuinely excited to see him. She actually ran up to him and threw her arms around him. He returned the favor by giving her a squeeky duck.
Rachel eventually went to Romp n' Roll for a Birthday Bash and camp training and I went to Qdoba for the big burrito eating contest but not before stopping off at RNR to get the amazingly beautiful message board made for us by Sarah and Wendy. Thanks ladies!
I got to Qdoba about 3:30 and helped with a few of the last minute finishing touches. There were'nt too many people there and I was kind of expecting a moderately small crowd since there was no one signed up for the burrito eating contest until pretty late in the game. Boy! Was I wrong!
Slowly but surely the place started filling up with friends, RNR customers, and people I didn't know. A group of guys came in asking about the burrito eating contest and I went over to chat. They heard about it via email. Another group of VCU students heard about it at the other Broad St Qdoba, and yet another group of VCU students said they had heard about it on a website that gives dates and locations of eating contests all over.
We ended up with 42 contestants and they had to move them all outside to give them directions becuse it was too loud and crowded inside!
The contest had to be conducted in waves and I was slated to go in the last round. I knew I was sunk after the first round when one guy ate 4 burritos. I did my best but had to steal water from the little girl across the table from me to get everything down smoothly. I only finished 2 burritos but they sure were good!
There was also a table with a spinnig wheel and prizes. $1 a spin. We collected almost $600 from donations and contest entry fees. That doesn't include the 20% of sales we got. I'll report a total amount when we get the final check.
Major thanks to everyone at Qdoba including Lisa and Ibo (sp?) for having us. It was a great event and I am once again amazed by the support you've shown us.
First of all, a brief Charlotte update...she ate a great dinner and then proceeded to have ANOTHER poop. Then after a little bit of TV watching, she ended up vomiting all over me and herself. We were looking at pictures (of Mary Poppins) on the computer and fortunately we missed the laptop (by inches). Thankfully, granny came over and helped clean up the mess.
She's now cleaned up and resting in bed. She seemed ok so maybe she just overdid it at dinner tonight.
ALSO, for those of you who live in the Richmond area: Many of you have asked how you can help us, especially with the business. HERE is your opportunity: Every year, Richmond Magazine names their Best/Worst of Richmond as voted by their readers. Two years ago, Romp n' Roll was voted best Kid's Gym (last year it wasn't a category) and for the last two years we got 2nd place for Best Place to Hold a Kid's Birthday Party and Best Website. We just learned (as we were sitting in the clinic today and spied a Richmond Magazine) that the contest is going on NOW and entries are due by May 8th!!!
Ballot entries cannot be filled out online. You must buy a Richmond Magazine or go by the Richmond Magazine office to get a ballot. They must be POSTMARKED by May 8th. You also must vote for at least 20 categories for your ballot to be valid. The categories in which Romp n' Roll would be eligible this year are: Best Kid's Gym, Best Parties and Best Kid's Art Classes
Richmond Magazines are sold at Ukrops, Barnes and Noble, and other fine local retailers. Thanks for your help with this! I know we have a fabulous network so this will help us get the word out!!!
Thanks in advance for your help with this.
Sunday, May 3, 2009
It's Roger's Turn
My turn. It's Sunday and the rain has been off and on pretty intense the last couple of days. Very much paralleling our emotions. I have that big weight on my chest again and the all-over body ache is creeping in. But Charlotte is, again, having a great time of it. She's being read to by Granny, eating strawberries, drinking chocolate milk with special green-tea supplements being added covertly (Thanks NM family). Anything to boost the immune system.
Speaking of that, I hope I don't disappoint anyone but CJ is going to become something of a germaphobic hermit the next few weeks. We really want to limit the number of visits and anyone who comes over may either be forced to wash hands and use hand sanitizer upon entry or may not even get to see her. She won't be going to any of the benefits organized in her honor the next couple weeks and we're working on getting a webcam setup between her Montessori school and home so she can at least see friends online.
Anyone else with webcams can visit with us then as well. Who knows? Maybe some of you will actually get to see Charlotte more than usual!
We are dealing with the latest "bump" (albeit a pretty big bump) on our journey. It wasn't entirely unexpected but we were REALLY hoping not to have to navigate this one. We both had something of an emotional crash yesterday evening and it was comforting to have each other within arms reach if we needed it.
We're dealing because we have to. What else are we going to do? We're certainly nowhere near the end of options and the docs working on her team are some of the best in the biz. If this detour doesn't work, then we look down another path, then another, etc...
One day at a time, right? Breath in, breath out, repeat.
Gotta go eat burritos.
Saturday, May 2, 2009
Discharged from the Hospital
I actually made dinner for a change. It feels very strange to have had a somewhat "normal" routine today.
I still feel like I've been kicked in the gut. No other words right now.
Thanks for all the supportive notes and comments.
OH, I do have a word of thanks to Sarah Blankenship and Wendy Schkeeper! They made a FABULOUS information board with pics of Charlotte and space to announce all kinds of events and information about Charlotte's story. It is pink and purple and oh-so-girly. We will be bringing it to the Qdoba party as well as any other upcoming fundraisers as a way to share information about Charlotte's story. It's beautiful and can turn into a wonderful bulletin board for Charlotte when this is all over and done with.
Friday, May 1, 2009
VERY excited to see that there are at least 12 contestants in the burrito eating contest! Hooray! Come on out and support these crazy eaters! That's wonderful!
Yesterday was a busy day all around. Charlotte was active and feeling pretty good most of the day. Her methotrexate level was about 2.1 which is good (it has to be .01 before they can start the next part of chemo but usually after "day 1" it was around 3.). That means her body is flushing the "stuff" out of her at a good rate. They were monitoring her blood pressure for a little while as it seemed to be high...BUT then she pooped and the pressure seemed to drop back to normal. Again, hooray. Her appetite was good yesterday and she ate lots of fruit so I am sure that helped.
Auntie Retta visited in the morning and brought mom coffee and yogurt for breakfast. YUM. She and Charlotte played some Candy Land and we all had some good visiting time. Granny arrived at the hospital around noon. We took a few walks, went to the playroom, and she was in a very "artsy" mood, drawing and doing collages with stickers. I understand that the rest of her day was very active as well.
I left after signing the consent for her MRI today and headed over to Romp n' Roll where things were hoppin'. It was a very busy afternoon and evening with our registration event. Lots of fun and we didn't stop until after 8 PM!! It was good to see many of our regular customers and a few new faces as well. Lots of people asking about Charlotte.
Roger and I got to spend another night together. That is a rarity these days so we try to appreciate it. Now it's off for another busy day and a weekend ahead.
Many of you have commented to us about hoping that the MRI will show shrinkage of the tumor. Interestingly enough, my understanding from Dr. Khan is that we really don't expect a lot of shrinkage during the first stages of chemo. They just hope not to see any additional or new growth. Today they will be looking specifically at her spine to make sure that none of the remaining tumor has spread to other areas of the central nervous system. Until she starts the high dose chemo, they do not expect the tumor to die and/or shrink. Kind of depressing when you think about all that she has been through and how this really doesn't do much (visually) to solve the problem but I know and trust that this will be the right thing for her.
Gotta go get ready for a busy weekend. Can you believe it is May already? When we started this process, it was cold, wintry, and January. Now there is green everywhere and flowers in bloom. And we're starting to think about summer. Crazy!
OH an update about the cruise: I think we are pursuing options for a 5-day Disney cruise that will leave out of Port Canaveral (Florida) sometime in Mid-June 2010. There are more details to come but start to think about whether you and your family would be interested. We know that not everyone will be able to go but Charlotte would love to celebrate her recovery with you on a Disney Cruise! I've already got an idea brewing in my head for t-shirts...
I'm sure there would be some kind of initial deposit but the balance would not be due until April of next year so you have a year to save for the big event. We are working with our travel agent on this and will distribute more information when it is available.
Charlotte went in for her MRI at about 12:30. I got to the hospital just in time to see her off into the capable hands of the radiologists. She was really funny when they gave her the "sleepy juice". As we may have mentioned before, it has about the same effect as a fast acting cocktail. So true to form with most of the women on my side of the family, she's a "fun drunk" (Roger can elaborate on that) :-) Anyway, she was very giggly and talkative and cracking up me and Granny.
Granny and I went upstairs to wait. She had a pretty good night from what I understand and slept well. Much thanks to Granny for staying with her and giving me and Roger a break.
She came back from the MRI still loopy but has since had some juice, most of an apple, and most of a hot dog. Now she's in Backyardigans Land (at least she's branching out from Dora).
No report from Radiology or Neurology yet about the MRI results but I did talk to Dr. Massey for a bit about her current levels. It looks like Potassium is good again but her Vitamin D is low. Not surprising because the chemo tends to deplete this nutrient a lot. Combine that with the fact that she isn't getting her normal daily dose of "outside" and we have low Vitamin D. Apparently we need to watch this pretty closely as long-term studies of kids with these kind of treatments sometimes result in low bone density down the road. So she'll probably get started on a Vitamin D supplement in addition to her multivitamin regimen.
The subject of radiation was once again broached as well. Looks like this will be even more of an inevitability. As she gets older and we see how the chemo progresses, they will tighten the plans for her protocol but since we weren't able to get 100% of the tumor out and the PNETs tend to be very aggressive, I think they are already looking forward to what type of radiation protocol we will need to consider. I don't have any more info on that yet but I'll find out and you (our loving fans) will be some of the first to know :-)
That's all I have to report for now.
Big PS: (and the whole reason I signed on in the first place)...
The Fundraiser at Everything But Water (Short Pump Town Center) has been postponed until May 17th. More info to come soon.
Ok, folks...not so good news:
We got the MRI results back. The long and short of it is: the tumor is growing. It seems that the chemo has not done anything to stave off the growth of these cancer cells. PNET tumors are, as Dr. Khan says, "Notoriously Ill-behaved". And this one is no exception.
SOOOO...what does this mean, you may ask?
We are stopping chemo for now (no sense in putting her through more of this if it's not working). She will go home tomorrow. We may still see her counts drop a bit but hopefully not as much since she didn't get the full round of chemo this time. We will be back in the clinic next week to check levels. We will also have a consult with Dr. Tye next week. He is out of town at a conference this week but has spoken with Dr. Khan and while he has not seen the scans, they are already talking about the possibility of another surgery to debulk as much of the tumor as they can. This would be probably two weeks from now (we have to wait for the chemo to completely get out of her system and for her levels to come up). They have to weigh the pros and cons of a third surgery that will remove as many cancer cells as possible vs the risks of surgery, etc.
Whether or not surgery is an option, the next step will be RADIATION (yes, indeedy, we are there). It will probably be pretty localized (not full head or spine) at this point but probably about 30 days worth. This could start as early as four weeks from now (if no surgery) or later if she has to have surgery. This should be outpatient but just about every day.
And then we reassess and probably jump at that point to the high dose chemo. Hey, at least we're not in a time crunch to get the insurance company to agree with us now (see, I can see the bright side of things....)
Needless to say, this has been very disappointing to me. Roger knows the "scoop" but did not have the advantage of seeing the scans. We will get to meet with Dr. Khan again on Monday to go over questions, etc.
In good news, Charlotte has been in great spirits all day. Thanks to Granny's conversations with the nutritionist, we got some extra strawberries ordered for her and she ate them ALL (not to mention all the berries granny brought yesterday). She also had a visit from Lisa Branner (the Marketing Director at Qdoba who is organizing this great burrito eating EVENT on Sunday). She brought Charlotte chocolate ice cream (YUM!) dinner for me (YUM YUM!) and stayed and talked for a while. She actually got here while I was meeting with Dr. Khan so it was good to have someone to talk to immediately after taking in all this bad news.
Charlotte is deep into her sticker collage creations and made pictures for Lisa AND Dr. Khan. Now it's Dora Time. Anything for this Princess, that's for sure!!!
HUGS and Deep Breaths to everyone. May the prayers for healing continue.