Happy Birthday to my Beautiful Baby Girl, my Monkey Butt, my 'Mater (she was born during the Hanover Tomato Festival), Zazou the Amazing Can Can Dancing Creature (long story)!
Today will be one of those ultimate special days. We get to meet former Redskins football players at the clinic (OK, it's more for Daddy than CJ!), we get to see a concert at Chcik-fil-a with great music, great food, and Star Wars characters walking around. Really, the 501st Star Wars Regiment will be there for pics and all!
Charlotte will be there for a little while, not sure exactly how long, "Big" Rompy (strangely Daddy sized) will be there as will a parade of folk/bluegrass musicians. Bring your "axe" and someone might let you jump in! Music should commence at about 5:30pm
Romp ' Roll will be open for free Open Gym starting at 5:00pm so if you want to take a break from the festivities, come on over!
Mommy and Daddy are giving her a kid-themed digital camera because she was showing a definite interest in taking pictures earlier. Good occupational therapy as well. (SHHH! Don't tell Charlotte.)
THEN!!! The big O' Birthday Bash on Friday at 6:00pm! Charlotte's official party ar Romp n' Roll. EVERYONE is invited. There will be enough cake for both the Hatfields and the McCoys (Chek yer wepuns at the door). Don't bring presents, just love and an appetite for cake and pizza.
Concerning the trip: we are getting our appointments lined up bit by bit and we've found out that Monday the 13th will be a simulation run to give everyone a chance to organize exactly what's going to happen. Then she gets an MRI on Tuesday and then...nothing until NEXT Monday. That's right, they say they need a few days to plan everything so we will be doing just chemo at that time. (JUST CHEMO?!?!)
We have a temporary place to stay until an official agency comes through with an appartment thanks every so much to our guardian angel, Meredith, for getting that going.
I've contacted the Washington Nationals and the Houston Astros about covering the Sunday game between the two. (Why not multi-task while we're down there, eh?) If it happens, I'll let you know where to hear/read it. Most probably WHAN 1430AM on Monday morning.
Update:
What a day! Busy and good...and did I mention BUSY?
My day consisted of a haircut, many errands, and then off to Romp n' Roll to work.
Daddy took CJ to the clinic where they got to meet some retired Washington Redskins. Charlotte actually got to hold a Super Bowl ring in her hand. I'm not sure who was more excited about this visit (Charlotte or Daddy) but I think the icing on the cake was when the football players sang "Frosty the Snowman" to Charlotte in honor of her birthday. Our nurse (April) was back from vacation and everyone made a big deal out of the birthday girl's big day. She got a present from the clinic (wrapped in SNOWMAN paper...too cute!). And, of course, Charlotte got to see Dr. Khan (her favorite doctor). Rumor has it that the moment with the football players was captured by WTVR and was on the news but I haven't seen it yet. Couldn't find it online.
In medical news, we have our first appointments for next week so things do seem to be lining up. We are in email communication with our nurse practitioner out there and the Houston Angel Network is coming out in full force. We continue to get messages from people who know us or know of us and are helping us make connections for ANYTHING we might need in TX. I know that we will be well cared for.
Our local Angel Network is hopping too. The concert was a success. God served up some beautiful weather, Chris Fuller and Charles Arthur played their greatest hits, Childtime had some fun kid's crafts, the 501st Brigade was there (Darth Vader, Storm Troopers, even an Obi Wan Kenobi) taking pictures to raise money for charity. I even saw a few storm troopers directing traffic! The Star Wars group raised over $200 for Charlotte PLUS, Chick-Fil-A donated 10% of the evenings proceeds to us (a little over $100) PLUS over 23 people donated blood today! Yay! Even Rompy got in on the action and came to visit all the kids.
Our biggest Angel of the evening came in the form of plane tickets. I am not sure if this Angel wants to be acknowledged yet so I will let her remain anonymous, but let me tell everyone that almost ALL of our remaining plane tickets for travel to and from Houston have been bought and paid for. We will only need to purchase Charlotte's and my return trip at the end of August (and we just don't know the date for that yet). What a gift! What a blessing!
So 36 hours from now, we will actually be IN Houston (that's scary!!). I've got a lot of packing to do and before that we are going to party like it's on sale for $19.99. Romp n' Roll: be there or be square. 6 PM. We may have to call the Fire Marshall :-)
Gotta run and be productive (oh and rest...)
Rachel
Thursday, July 9, 2009
Tuesday, July 7, 2009
A Whirlwind of Developments
Hi everyone,
This has been quite the week and it's not even close to being over! Today was a whirlwind of developments. We simply got too antsy waiting for the folks at MCV to get us details about out treatment at MD Anderson so we started making our own phone calls and waddya know?!?! We got stuff done! We got our flights for Saturday, rides from the airport, a place to stay (at least for the weekend), a social worker at MD Anderson (who is amazing!), an appointment at the Proton Center, our "My MD Anderson" account set up, and a thin mint! I got the thin mint. Rachel did everything else. We still have some details to iron out including our long-term housing arrangements but it's definitely steps in the right direction.
Charlotte had a very good day except for when she fell on her butt coming in the door (no damage but lots of drama) and when Wyatt turned off the TV because he wanted CJ to play with him and she had a melt down.
Rachel took Charlotte to the clinic this morning and I got to do stuff at home and go running.
Charlotte had a good potty day as well! She told mommy her bottom hurt and Rachel took her to the bathroom and low and behold!!! She did both (pee and poop)! We are trying (slowly) to get her back into that idea of using the potty. Some new tinkerbell panties from Aunt B might just help things along. We don't want to rush things but...it's time.
While I was working at Romp n' Roll tonight, the rest of the family went over to Wyatt's for dinner (where the TV meltdown took place). It was a lovely evening, eating dinner outdoors in the "country" while the kids played.
Big events coming in the next few days. We'd love to see folks at the concert on Thursday in the Chick-Fil-A parking lot (5:30-7:30). Then Friday will be her party at 6 PM at Romp n' Roll. We have said no presents...AND WE MEAN IT!! She has more than enough toys and clothes. We just want to heap on the love! A HUGE thanks to Jeni Mauney (a Romp n' Roll mom and good friend) for making a cake for the party as well as to Roger's Aunt Lynn and the NM/CO crew for ordering her DQ ice cream cakes. We will have PLENTY of cake for everyone. Don't forget to wear your pink and/or purple in honor of the princess.
One final note I will leave you with: the other night as I was flushing Charlotte's lines and putting her to bed, she said, "Mom, you and Dad take really good care of me." Sniff, sniff, AWWWWW! That was definitely a sweet moment! Nice to hear her say that. I can't believe she will be four. What a journey this has been. I still remember that little 6 lb, 12 oz rocket baby that showed her stubborn strength from the very beginning. She has always been a fighter and we will continue to fight. She was born strong for a reason.
Ok, I'm done...
Rachel & Roger
This has been quite the week and it's not even close to being over! Today was a whirlwind of developments. We simply got too antsy waiting for the folks at MCV to get us details about out treatment at MD Anderson so we started making our own phone calls and waddya know?!?! We got stuff done! We got our flights for Saturday, rides from the airport, a place to stay (at least for the weekend), a social worker at MD Anderson (who is amazing!), an appointment at the Proton Center, our "My MD Anderson" account set up, and a thin mint! I got the thin mint. Rachel did everything else. We still have some details to iron out including our long-term housing arrangements but it's definitely steps in the right direction.
Charlotte had a very good day except for when she fell on her butt coming in the door (no damage but lots of drama) and when Wyatt turned off the TV because he wanted CJ to play with him and she had a melt down.
Rachel took Charlotte to the clinic this morning and I got to do stuff at home and go running.
Charlotte had a good potty day as well! She told mommy her bottom hurt and Rachel took her to the bathroom and low and behold!!! She did both (pee and poop)! We are trying (slowly) to get her back into that idea of using the potty. Some new tinkerbell panties from Aunt B might just help things along. We don't want to rush things but...it's time.
While I was working at Romp n' Roll tonight, the rest of the family went over to Wyatt's for dinner (where the TV meltdown took place). It was a lovely evening, eating dinner outdoors in the "country" while the kids played.
Big events coming in the next few days. We'd love to see folks at the concert on Thursday in the Chick-Fil-A parking lot (5:30-7:30). Then Friday will be her party at 6 PM at Romp n' Roll. We have said no presents...AND WE MEAN IT!! She has more than enough toys and clothes. We just want to heap on the love! A HUGE thanks to Jeni Mauney (a Romp n' Roll mom and good friend) for making a cake for the party as well as to Roger's Aunt Lynn and the NM/CO crew for ordering her DQ ice cream cakes. We will have PLENTY of cake for everyone. Don't forget to wear your pink and/or purple in honor of the princess.
One final note I will leave you with: the other night as I was flushing Charlotte's lines and putting her to bed, she said, "Mom, you and Dad take really good care of me." Sniff, sniff, AWWWWW! That was definitely a sweet moment! Nice to hear her say that. I can't believe she will be four. What a journey this has been. I still remember that little 6 lb, 12 oz rocket baby that showed her stubborn strength from the very beginning. She has always been a fighter and we will continue to fight. She was born strong for a reason.
Ok, I'm done...
Rachel & Roger
Sunday, July 5, 2009
A Really Good Day
Today was a really good day for everyone, I think. We made it to church and then spent the afternoon catching up on various projects. I worked on some RNR stuff and even wrote a few thank you notes. Roger watched some tennis and golf and caught up on some emails, and Charlotte pretty much entertained herself with books, drawing, and (her new favorite) toting around daddy's shoelaces which she removes from his shoes. At least it's good OT practice.
We had a lovely dinner at the Smokey Pig (thanks to Gramps) and just got back.
We asked Dr. Khan if it would be possible to postpone the TX trip so that our first day in clinic (even though it wouldn't be the first day of radiation) would be the 13th. This would make coordination on all our parts much easier. He did email me back to say that would be fine. SOOOOO....here's the plan:
We WILL have the Rompy's Summer Concert Series on July 9th at 5:30 in the Chick-Fil-A parking lot. Give blood at the bloodmobile in Charlotte's honor (if you can...they'll be there from 3-8 PM), bring some non-perishable food for the food bank, or just come out for a good time. The weather and the music should be GREAT.
We WILL have her birthday party on July 10th at 6 PM as originally planned. Tinkerbell theme. NO presents. Everyone come to romp n' roll and wear pink and/or purple. This will be her big sendoff.
We will plan to leave for TX sometime on the 11th. I am looking into flights right now. We have a few folks investigating some free options for us too but if it doesn't work out, Roger and I will have many other opportunities to take advantage with our new "commute". I will try to help get everything and everyone settled over the weekend, stay for the first day of everything on the 13th, and then catch a flight back either late on the 13th or early on the 14th. We will switch sometime on or around the 25th of July.
So now Roger and I need to get travel plans together, make lots of packing lists, figure out where we will stay while in TX, etc. etc. etc. Please be patient if we are minimally responsive to emails, etc. at this time.
Granny and Gramps plan to stay in VA until after I return from TX so that will help with the transition too.
That's all for now. Her comes Monday. What a week this will be!!!!
Rachel
We had a lovely dinner at the Smokey Pig (thanks to Gramps) and just got back.
We asked Dr. Khan if it would be possible to postpone the TX trip so that our first day in clinic (even though it wouldn't be the first day of radiation) would be the 13th. This would make coordination on all our parts much easier. He did email me back to say that would be fine. SOOOOO....here's the plan:
We WILL have the Rompy's Summer Concert Series on July 9th at 5:30 in the Chick-Fil-A parking lot. Give blood at the bloodmobile in Charlotte's honor (if you can...they'll be there from 3-8 PM), bring some non-perishable food for the food bank, or just come out for a good time. The weather and the music should be GREAT.
We WILL have her birthday party on July 10th at 6 PM as originally planned. Tinkerbell theme. NO presents. Everyone come to romp n' roll and wear pink and/or purple. This will be her big sendoff.
We will plan to leave for TX sometime on the 11th. I am looking into flights right now. We have a few folks investigating some free options for us too but if it doesn't work out, Roger and I will have many other opportunities to take advantage with our new "commute". I will try to help get everything and everyone settled over the weekend, stay for the first day of everything on the 13th, and then catch a flight back either late on the 13th or early on the 14th. We will switch sometime on or around the 25th of July.
So now Roger and I need to get travel plans together, make lots of packing lists, figure out where we will stay while in TX, etc. etc. etc. Please be patient if we are minimally responsive to emails, etc. at this time.
Granny and Gramps plan to stay in VA until after I return from TX so that will help with the transition too.
That's all for now. Her comes Monday. What a week this will be!!!!
Rachel
Saturday, July 4, 2009
Happy 4th of July
Just a note to wish everyone a Happy 4th of July. Every holiday is a bonus to us and we appreciate every chance to have Charlotte with us.
I, though not much of a flag waver, certainly appreciate the opportunities I have been afforded as a citizen of the United States of America. We all often take for granted the risks and sacrifices the Founding Fathers made to create this country. It's also amazing they didn't strangle each other given their widely varying backgrounds and religious beliefs.
Feel free to read up.
I, for one, need to go taste apple pies!
Rog
Update:
As the fireworks pop off in the background, it has been a very full day! We spent a leisurely morning getting ready for the Ashland Parade. Roger went down early to participate in the judging of the Apple Pie contest. There were over 20 entries and his "group" of judges had to taste at least 6 pies. Poor thing! He also marched as the leader of the "Dad's Brigade" in full dad costume. It was a very creative costume and I'm not sure if we have a picture...but he definitely looked like a "DAD".
Charlotte was in grumpy, antisocial mode. She would talk to folks but only on her terms and she didn't seem that interested in the day's activities. Her moments of happiness seemed to be in eating and hanging out with daddy. She sure looked cute though.
Uncle Kolbey helped entertain everyone with his performance in the Hanover Concert Band. The patriotic music was particularly good this year.
After these festivities, I went off with a neighbor for a spontaneous pedicure (what a treat!) and we kind of lazed the afternoon away until dinner. Dinner was a feast with homemade beef and turkey burgers, hot dogs, watermelon, corn on the cob, chips, veggies, salsa, and a few other assorted goodies brought by the neighbors. We had a houseful of friends and family and it was great.
Charlotte is now sleeping and Roger and I are actually doing some work (go figure). Got to do a bit more tomorrow too.
STILL no word from the doctor as to when we are expected in TX (despite my constant emails). I will get an answer one way or another, I guess. I'm not sure how they expect us to make travel arrangements (not to mention getting coverage for our business and all the other necessary procedures) with only a few day's notice, but somehow I know it will all work out.
Oh, I must mention our adventures of the previous night: Roger and I went for a bike ride after dinner. When we came home, my mom (who was watching Charlotte) was having a sudden asthma attack. She has had asthma her entire life but it has usually been very managable. It can flare up from time to time, especially if the weather is particularly extreme, there is excess pollen or mold, or if she is having a bout of bronchitis or some other respiratory illness; however, this attack came out of nowhere. She hadn't been having any breathing difficulty whatsoever. I got her albuterol and hooked her up to the machine but it didn't seem to get better so I called my stepdad and Kolbey to come home from cleaning at Romp n' Roll. When she continued to NOT improve, I called 911. So the fire rescue AND ambulance came and shuttled mom off to the emergency room at Memorial Regional. Oxygen, prednisone, and more albuterol seemed to do the trick and we were out of the hospital within 90 minutes. She has been fine ever since but that was a pretty scary episode. It didn't help that my mom HATES going to hospitals and HATES having to take the prednisone but she was a pretty decent patient considering the circumstances and her history. At least she was nice to the doctors. She did, however, shoot my stepdad the bird after he offered some comment that didn't make her happy. THAT was hilarious. I've never seen her do that before....If you want to figure out where I get my attitude from, you don't have to look very far.
Looking back, we realized that she has not had an attack like this (sudden without any known cause) in over 30 years. Crazy!
So that's enough drama for one weekend, I think. We will aim to keep Sunday quiet...
Hope everyone had a safe and happy 4th. The weekend will be over before you know it so enjoy.
Rachel
I, though not much of a flag waver, certainly appreciate the opportunities I have been afforded as a citizen of the United States of America. We all often take for granted the risks and sacrifices the Founding Fathers made to create this country. It's also amazing they didn't strangle each other given their widely varying backgrounds and religious beliefs.
Feel free to read up.
I, for one, need to go taste apple pies!
Rog
Update:
As the fireworks pop off in the background, it has been a very full day! We spent a leisurely morning getting ready for the Ashland Parade. Roger went down early to participate in the judging of the Apple Pie contest. There were over 20 entries and his "group" of judges had to taste at least 6 pies. Poor thing! He also marched as the leader of the "Dad's Brigade" in full dad costume. It was a very creative costume and I'm not sure if we have a picture...but he definitely looked like a "DAD".
Charlotte was in grumpy, antisocial mode. She would talk to folks but only on her terms and she didn't seem that interested in the day's activities. Her moments of happiness seemed to be in eating and hanging out with daddy. She sure looked cute though.
Uncle Kolbey helped entertain everyone with his performance in the Hanover Concert Band. The patriotic music was particularly good this year.
After these festivities, I went off with a neighbor for a spontaneous pedicure (what a treat!) and we kind of lazed the afternoon away until dinner. Dinner was a feast with homemade beef and turkey burgers, hot dogs, watermelon, corn on the cob, chips, veggies, salsa, and a few other assorted goodies brought by the neighbors. We had a houseful of friends and family and it was great.
Charlotte is now sleeping and Roger and I are actually doing some work (go figure). Got to do a bit more tomorrow too.
STILL no word from the doctor as to when we are expected in TX (despite my constant emails). I will get an answer one way or another, I guess. I'm not sure how they expect us to make travel arrangements (not to mention getting coverage for our business and all the other necessary procedures) with only a few day's notice, but somehow I know it will all work out.
Oh, I must mention our adventures of the previous night: Roger and I went for a bike ride after dinner. When we came home, my mom (who was watching Charlotte) was having a sudden asthma attack. She has had asthma her entire life but it has usually been very managable. It can flare up from time to time, especially if the weather is particularly extreme, there is excess pollen or mold, or if she is having a bout of bronchitis or some other respiratory illness; however, this attack came out of nowhere. She hadn't been having any breathing difficulty whatsoever. I got her albuterol and hooked her up to the machine but it didn't seem to get better so I called my stepdad and Kolbey to come home from cleaning at Romp n' Roll. When she continued to NOT improve, I called 911. So the fire rescue AND ambulance came and shuttled mom off to the emergency room at Memorial Regional. Oxygen, prednisone, and more albuterol seemed to do the trick and we were out of the hospital within 90 minutes. She has been fine ever since but that was a pretty scary episode. It didn't help that my mom HATES going to hospitals and HATES having to take the prednisone but she was a pretty decent patient considering the circumstances and her history. At least she was nice to the doctors. She did, however, shoot my stepdad the bird after he offered some comment that didn't make her happy. THAT was hilarious. I've never seen her do that before....If you want to figure out where I get my attitude from, you don't have to look very far.
Looking back, we realized that she has not had an attack like this (sudden without any known cause) in over 30 years. Crazy!
So that's enough drama for one weekend, I think. We will aim to keep Sunday quiet...
Hope everyone had a safe and happy 4th. The weekend will be over before you know it so enjoy.
Rachel
Thursday, July 2, 2009
Planning to go to MD Anderson in Houston
Not a lot of new news except that Charlotte's numbers seem to be improving rather than tanking like they were supposed to. She is just amazing!
She's been taking her icky medicine with a minimum of fuss. We've developed the technique of giving her a little bit of meds, then a little piece of chocolate, then more meds, then chocolate, and so on. Before she knows it, the icky stuff is gone and all that's left is the good (relatively) tasting medicine.
She had a pretty mellow day watching a video or two, playing with the shoelaces from my running shoes, and opening a box of birthday presants that came from Clampitville (Aunt B and Uncle Hairy). Very nice gifts folks even though we expressly said, "NO PRESANTS!" this year since she's got so much stuff already and has been getting presants almost constantly since "The Crap" began.
Speaking of Aunt B an' 'em, We got to chat with them via the Hopecam all the way from Hawaii. We (or rather "I") also chatted with the Prices for a short bit as well. CJ wasn't all that interested.
Right now, she's over at Uncle Kolbey's threading frog beads onto a string. She's getting really good at that again.
Rachel has been doing most of the work today, taking Charlotte into the clinic and then going in to Romp n' Roll for the afternoon/evening shift. I get to work hard tomorrow.
I took advantage of my free 90-minute massage today at Massage Envy. I was quite the noodle afterwards. I might get a membership because I really want that once a month! :-)
So...what the heck is on the horizon? We are almost assuredly going to MD Anderson in Houston for the proton beam radiation. We're still not 100% sure when we're going, or how we're going to get there, or where we're going to stay but there are sure a lot of resources out there of which we could take advantage. Thanks to all of you for forwarding those resources to us, especially Deb Price (Nile's mom).
There's a strong possibility we will have to postpone Charlotte's birthday party. Very disappointing but CJ's treatment comes first and we know we'll get the absolute best care at MD Anderson.
I've already contacted the Houston Ground Angels and they'll be helping out with getting us where we need to be. You want an organization that is worth a hefty donation? There you go. Here's their address:
Houston Ground Angels
P.O. Box 683127
Houston, Tx. 77268-3127
Here's the website: http://www.houstongroundangels.org/
There's a bowl of ice cream calling me.
She's been taking her icky medicine with a minimum of fuss. We've developed the technique of giving her a little bit of meds, then a little piece of chocolate, then more meds, then chocolate, and so on. Before she knows it, the icky stuff is gone and all that's left is the good (relatively) tasting medicine.
She had a pretty mellow day watching a video or two, playing with the shoelaces from my running shoes, and opening a box of birthday presants that came from Clampitville (Aunt B and Uncle Hairy). Very nice gifts folks even though we expressly said, "NO PRESANTS!" this year since she's got so much stuff already and has been getting presants almost constantly since "The Crap" began.
Speaking of Aunt B an' 'em, We got to chat with them via the Hopecam all the way from Hawaii. We (or rather "I") also chatted with the Prices for a short bit as well. CJ wasn't all that interested.
Right now, she's over at Uncle Kolbey's threading frog beads onto a string. She's getting really good at that again.
Rachel has been doing most of the work today, taking Charlotte into the clinic and then going in to Romp n' Roll for the afternoon/evening shift. I get to work hard tomorrow.
I took advantage of my free 90-minute massage today at Massage Envy. I was quite the noodle afterwards. I might get a membership because I really want that once a month! :-)
So...what the heck is on the horizon? We are almost assuredly going to MD Anderson in Houston for the proton beam radiation. We're still not 100% sure when we're going, or how we're going to get there, or where we're going to stay but there are sure a lot of resources out there of which we could take advantage. Thanks to all of you for forwarding those resources to us, especially Deb Price (Nile's mom).
There's a strong possibility we will have to postpone Charlotte's birthday party. Very disappointing but CJ's treatment comes first and we know we'll get the absolute best care at MD Anderson.
I've already contacted the Houston Ground Angels and they'll be helping out with getting us where we need to be. You want an organization that is worth a hefty donation? There you go. Here's their address:
Houston Ground Angels
P.O. Box 683127
Houston, Tx. 77268-3127
Here's the website: http://www.houstongroundangels.org/
There's a bowl of ice cream calling me.
Tuesday, June 30, 2009
Long and Busy Days
Did you miss us?
It's hard to believe that our last post was on Sunday. These days have been long and full of action (and tiring...what else is new?).
Trip to the clinic yesterday was L-O-N-G and frustrating for daddy. Her numbers are low but not horrible so she was able to get both medicines. Unfortunately, she refused to take the temozolamide in any type of food no matter how much we tried to convince her that it wouldn't taste bad (and it shouldn't). She's way too smart for us now and knows that when we bring her food or drink that is unopened, it is already "tainted" with something.
Anyway, Roger took the prescription to the compounding pharmacy and they made a concoction. Fortunately, we only have to do this medicine once a day until Friday (for now). The topotecan infusion also seems to be going well.
Oh, and she's still having problems with no poop. I think it might be the Zofran that's stopping her up so we're back on the mag citrate regimen.
She's been very quiet and mellow lately. She definitely gets tired quickly. I took her to OT today and she worked hard. Then we had to go back to the orthotic place to get her brace readjusted. The PT wants her to go back to wearing the brace again just to help support her muscles. They are still carrying a lot of tension and it should help with the overcompensation.
In other news:
We found out that BOTH MD Anderson AND Shands Jacksonville are in our insurance network AND they should be able to find us radiation oncologists in-network at both places as well AND the insurance will cover the proton beam radiation (yay). This opens up a whole host of possibilities and I think MD Anderson is back on the table for options. While we know we would have great family/friend support in Jacksonville, MD Anderson is already going to be fully supportive of her protocol (since they created it) and we wouldn't have to get to know a whole host of new physicians. Plus, we know they will accept her in TX. Not so sure about FL yet.
SOOOO...Roger and I have been doing some talking and we will talk some more tonight. Look for a big announcement tomorrow I guess.
The other potentially bad news is that wherever they go, they may want her there as early as the end of next week. That's right. We may have to reschedule her birthday party. Stay tuned and we will let you know. Kind of a bummer but we're learning how to go with the flow....
Meanwhile we have also been looking at the transportation logistics. Odds are, one of us (probably Roger) would fly out to (wherever) initially with Charlotte and we would switch places about every two weeks. Whoever is in VA would cover RNR and hold down the fort. The other person would handle Charlotte and all the medical stuff. Oh joy. It really doesn't make me happy as I know that part of why and how we have survived all of this so far is because Roger and I make a great team. This goes for parenting as well as all the business stuff. Potentially, Roger and I may go over 6 weeks without some quality time together and we haven't done that since before we got married (let alone had our lives in crisis). Yes, we know we will need lots of support and we will plan to seek it out!!!
Fortunately we have some airline credits saved up on AirTran that will probably help with tickets and the fundraising efforts will definitely help with travel expenses. We will be investigating lodging options (apartments, Ronald McDonald House, etc.) once we make a final decision.
So that's my update for now. More to come. I'm hungry and dinner (cooked by the 'rents) is calling...
Rachel
It's hard to believe that our last post was on Sunday. These days have been long and full of action (and tiring...what else is new?).
Trip to the clinic yesterday was L-O-N-G and frustrating for daddy. Her numbers are low but not horrible so she was able to get both medicines. Unfortunately, she refused to take the temozolamide in any type of food no matter how much we tried to convince her that it wouldn't taste bad (and it shouldn't). She's way too smart for us now and knows that when we bring her food or drink that is unopened, it is already "tainted" with something.
Anyway, Roger took the prescription to the compounding pharmacy and they made a concoction. Fortunately, we only have to do this medicine once a day until Friday (for now). The topotecan infusion also seems to be going well.
Oh, and she's still having problems with no poop. I think it might be the Zofran that's stopping her up so we're back on the mag citrate regimen.
She's been very quiet and mellow lately. She definitely gets tired quickly. I took her to OT today and she worked hard. Then we had to go back to the orthotic place to get her brace readjusted. The PT wants her to go back to wearing the brace again just to help support her muscles. They are still carrying a lot of tension and it should help with the overcompensation.
In other news:
We found out that BOTH MD Anderson AND Shands Jacksonville are in our insurance network AND they should be able to find us radiation oncologists in-network at both places as well AND the insurance will cover the proton beam radiation (yay). This opens up a whole host of possibilities and I think MD Anderson is back on the table for options. While we know we would have great family/friend support in Jacksonville, MD Anderson is already going to be fully supportive of her protocol (since they created it) and we wouldn't have to get to know a whole host of new physicians. Plus, we know they will accept her in TX. Not so sure about FL yet.
SOOOO...Roger and I have been doing some talking and we will talk some more tonight. Look for a big announcement tomorrow I guess.
The other potentially bad news is that wherever they go, they may want her there as early as the end of next week. That's right. We may have to reschedule her birthday party. Stay tuned and we will let you know. Kind of a bummer but we're learning how to go with the flow....
Meanwhile we have also been looking at the transportation logistics. Odds are, one of us (probably Roger) would fly out to (wherever) initially with Charlotte and we would switch places about every two weeks. Whoever is in VA would cover RNR and hold down the fort. The other person would handle Charlotte and all the medical stuff. Oh joy. It really doesn't make me happy as I know that part of why and how we have survived all of this so far is because Roger and I make a great team. This goes for parenting as well as all the business stuff. Potentially, Roger and I may go over 6 weeks without some quality time together and we haven't done that since before we got married (let alone had our lives in crisis). Yes, we know we will need lots of support and we will plan to seek it out!!!
Fortunately we have some airline credits saved up on AirTran that will probably help with tickets and the fundraising efforts will definitely help with travel expenses. We will be investigating lodging options (apartments, Ronald McDonald House, etc.) once we make a final decision.
So that's my update for now. More to come. I'm hungry and dinner (cooked by the 'rents) is calling...
Rachel
Sunday, June 28, 2009
A Great Day
I can't figure Charlotte out. She starts to look zombiesque and then turns around and has a great day.
We went to the Home-based Business Bazaar and she didn't seem to do that well. We made the rounds and saw a few friends and RNR members like the Flanagans, Bridget, Evan, Malia, Xavier. We ended up in the nursery where we stayed for a while. There were some very nice things for sale and I know Granny did her share to make it a successful event.
Then we made our exit and I promptly pulled something in my back somewhere between the front door and the end of the sidewalk. I have no idea what I did but it started really bothering me by the time we got to the car.
When we got home, I fed Charlotte lunch and took some Vitamine "I." Granny was merciful and took CJ over the Uncle Kolbey's house so I could get the ice going in best Dr. Anna style, "20 minutes on, 20 minutes off."
While I sat on the couch trying to find a comfortable position, I found myself watching, Farrah's Story. This is not a show to watch if you're emotionally fragile but if you want a real look into the life of a cancer patient, with all the ups and down, the side effects, the hopes, the impact on families, etc...then watch it.
It really ran me down though and I found myself slipping into Seriously Bummedsville a few times. Kinda ruined my day. I told Rachel tonight that it's my every 6-month funk which is actually happening once or twice a month these days.
Rachel went in to teach a class and lead Brithday Bashes today and I went in to help with the first ever Awesome Adventure Party! I was pretty much useless with my back/shoulder so I worked front desk and the regular crew wowed them. It was a pretty successful party from what I saw/heard.
When we got home, Charlotte was already saying she wanted to go to bed so we brought her back home and got her ready. She ended up having a great day, pooping, eating, drinking, and having lots of educational fun with Granny. She was just pooped.
Update:
Some of you have asked me to repeat Deb Harper's contact information. If you haven't seen yet, Deb did a photo shoot with us last week and took some FABULOUS pics of Charlotte (me and Roger too). She is doing a "Pictures for Charlotte" fundraiser where she will take pics of your family (wherever you wish) and give you an edited CD of the prints in exchange for a donation of your choice for Charlotte.
If you are on Facebook, you can take a look at the pics on either mine or Roger's sites. We should have some posted to the Caring Bridge site soon.
Her contact info is: Deb Harper (804) 273-0064
Harper3902@aol.com
Update:
Aunt B and Uncle Not-So-Hairy headed off to the Hawaiian Islands this morning and Reesestrong (the doll) went with them. Can't wait to hear the stories and see the pics.
Extra positive thoughts should go out to the Reilly family as their son, Liam, who we met at the Neslon Clinic, passed away on Monday the 22nd. I say again, cancer really, really sucks!
On a more positive note, Nile, the boy with sickle cell anemia I met in the MRI room, has had a good go of things lately as he got to meet the Super Bowl Champ Steelers and received a bunch of stuff from his favorite team, the Washington Redskins. He even got a call from Santanna Moss (wide receiver). The absolute BEST thing is that he will be receiving his bone marrow transplant next week (I think)!
Here's his CB site: http://www.caringbridge.org/visit/nileprice The Redskins visit (Howiette the Hoggett actually) was caught on film and his expression when he realized what was going on was priceless (no pun intended). It's part of Channel 12 About Town. I've asked Nile to forward a link to the video.
Just got notice that Rachel posted another new update to CJ's journal. Hope you don't mind the multiple posts. Don't forget to read Rachel's last post about Deb Harper's photo shoots!
CJ has had two "walks" around the neighbourhood today and is currently next door with Granny working on some of those cookies. She watched "Mary Poppins" again today and when I asked her if she would like Mary Poppins to visit again and bring her tea set, she said "Yes!"
Everything depends on her numbers but hopefully we can get it planned soon.
Tomorrow is a very long day because we're starting a new drug in the mix and they have to do some extra tests and such. Heard from the Klauers that they will be having a long day of it too. It'll be a Dad's day by the looks of it. The two families are conspiring to open a Tiki Bar at the Nelson Clinic as part of our new "Adult Life" department! :-)
So here's to everyone fighting the good fight past, present, and future. I raise a toast to you all.
Now on to an ice cream party!
We went to the Home-based Business Bazaar and she didn't seem to do that well. We made the rounds and saw a few friends and RNR members like the Flanagans, Bridget, Evan, Malia, Xavier. We ended up in the nursery where we stayed for a while. There were some very nice things for sale and I know Granny did her share to make it a successful event.
Then we made our exit and I promptly pulled something in my back somewhere between the front door and the end of the sidewalk. I have no idea what I did but it started really bothering me by the time we got to the car.
When we got home, I fed Charlotte lunch and took some Vitamine "I." Granny was merciful and took CJ over the Uncle Kolbey's house so I could get the ice going in best Dr. Anna style, "20 minutes on, 20 minutes off."
While I sat on the couch trying to find a comfortable position, I found myself watching, Farrah's Story. This is not a show to watch if you're emotionally fragile but if you want a real look into the life of a cancer patient, with all the ups and down, the side effects, the hopes, the impact on families, etc...then watch it.
It really ran me down though and I found myself slipping into Seriously Bummedsville a few times. Kinda ruined my day. I told Rachel tonight that it's my every 6-month funk which is actually happening once or twice a month these days.
Rachel went in to teach a class and lead Brithday Bashes today and I went in to help with the first ever Awesome Adventure Party! I was pretty much useless with my back/shoulder so I worked front desk and the regular crew wowed them. It was a pretty successful party from what I saw/heard.
When we got home, Charlotte was already saying she wanted to go to bed so we brought her back home and got her ready. She ended up having a great day, pooping, eating, drinking, and having lots of educational fun with Granny. She was just pooped.
Update:
Some of you have asked me to repeat Deb Harper's contact information. If you haven't seen yet, Deb did a photo shoot with us last week and took some FABULOUS pics of Charlotte (me and Roger too). She is doing a "Pictures for Charlotte" fundraiser where she will take pics of your family (wherever you wish) and give you an edited CD of the prints in exchange for a donation of your choice for Charlotte.
If you are on Facebook, you can take a look at the pics on either mine or Roger's sites. We should have some posted to the Caring Bridge site soon.
Her contact info is: Deb Harper (804) 273-0064
Harper3902@aol.com
Update:
Aunt B and Uncle Not-So-Hairy headed off to the Hawaiian Islands this morning and Reesestrong (the doll) went with them. Can't wait to hear the stories and see the pics.
Extra positive thoughts should go out to the Reilly family as their son, Liam, who we met at the Neslon Clinic, passed away on Monday the 22nd. I say again, cancer really, really sucks!
On a more positive note, Nile, the boy with sickle cell anemia I met in the MRI room, has had a good go of things lately as he got to meet the Super Bowl Champ Steelers and received a bunch of stuff from his favorite team, the Washington Redskins. He even got a call from Santanna Moss (wide receiver). The absolute BEST thing is that he will be receiving his bone marrow transplant next week (I think)!
Here's his CB site: http://www.caringbridge.org/visit/nileprice The Redskins visit (Howiette the Hoggett actually) was caught on film and his expression when he realized what was going on was priceless (no pun intended). It's part of Channel 12 About Town. I've asked Nile to forward a link to the video.
Just got notice that Rachel posted another new update to CJ's journal. Hope you don't mind the multiple posts. Don't forget to read Rachel's last post about Deb Harper's photo shoots!
CJ has had two "walks" around the neighbourhood today and is currently next door with Granny working on some of those cookies. She watched "Mary Poppins" again today and when I asked her if she would like Mary Poppins to visit again and bring her tea set, she said "Yes!"
Everything depends on her numbers but hopefully we can get it planned soon.
Tomorrow is a very long day because we're starting a new drug in the mix and they have to do some extra tests and such. Heard from the Klauers that they will be having a long day of it too. It'll be a Dad's day by the looks of it. The two families are conspiring to open a Tiki Bar at the Nelson Clinic as part of our new "Adult Life" department! :-)
So here's to everyone fighting the good fight past, present, and future. I raise a toast to you all.
Now on to an ice cream party!
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