Some fun facts about Proton Radiation:
1. The first attempts to use proton radiation for cancer/medical treatment began in the 1950s but it was only in the last decade that it has become possible to develop proton beam facilities in conjunction with established medical centers.
2. Radiation is delivered through large gantries. Each gantry weighs 190 tons, sits three stories tall, and is 35 feet in diameter.
3. 2/3 of the proton therapy center is build below ground level. The walls are 8 feet thick and 50 feet high. A 20-story building could be constructed with the amount of concrete poured for the proton therapy center (and it's only 3 stories tall!).
4. The equipment for the machinery weighed 1600 tons when it arrived from Japan at the Port of Houston and it took a 31-truck caravan to bring it to the construction site.
******************************************
On a more personal note:
She's had a good day. She did start losing her hair today. Lots of little hairs on the pillow this morning when she woke up. It's falling out in little bits and clumps, and there is obviously not a whole lot to fall out anyway.
The major issue of the day seems to be getting her accutane prescription filled. For those who do not know, Accutane is usually an acne drug and it is HIGHLY dangerous to unborn babies. Causes very severe birth defects. For that reason, any female of childbearing age who is on the drug must be on TWO forms of birth control AND must take a pregnancy test each month. In order to prescribe the drug, physicians must be registered through this system called iPledge and you can't get the prescription except through an approved provider. Furthermore, as a patient you have to register on this iPledge site. If you're of childbearing age, you have to take a test so that they know that you understand the risks of pregnancy, etc. Obviously, we don't have to do that for Charlotte but we do still have to follow all the other rules. Well, we ran into a few glitches trying to get her prescription refilled here:
Glitch #1: The prescription was originally written in VA under Dr. Khan so in order to transfer the prescription and have Dr. Wolff write the script, I had to go on to the iPledge site and transfer to Dr. Wolff as my primary doctor. It took us forever just to figure out that we had to do this.
Glitch #2: When Dr. Wolff went in to approve me (well, Charlotte) as a patient, he couldn't find her in the system. We worked on this all day (in and out of treatments) and while the system kept telling me my application was in process and awaiting doctor approval, Dr. Wolff couldn't seem to find Charlotte as his patient waiting approval. We were lost in cyberspace. It only took me coming back to the clinic after radiation and both of us getting on the telephone help line with the iPledge folks to get it resolved.
Glitch #3: I took the prescription to the MD Anderson pharmacy to get it filled. At this point, it was after 4 PM. They said if I wanted the prescription compounded into liquid form (I did) it would take almost 2 hours. So we headed back to RMH to wait. Meanwhile, Charlotte ate some dinner and we've been relaxing. I go to call the pharmacy about quarter to 6 to see if it's almost ready so we can walk back to MDA and the pharmacist tells me that she tried to call me (obviously called the home number which doesn't help much) and the insurance is not approving the prescription. No idea why since they approved it before. It may be because we are trying to get it compounded into liquid form. Needless to say, it will cost $300+. Basically, I don't care about the cost at this point, I just want the meds. She says, "Do you need this today?" and I said, "YES!!!". She didn't get her morning dose and I'm not waiting any longer to get this stuff into her. So she said it would be another hour...or so. Sheesh.
So we will be heading back over to MDA in a bit. At least the weather will have cooled a bit so we can walk. Fresh air and exercise will do us good.
Otherwise, everything is ok. As ok as it can be. Thanks for all the positive vibes and support we have been getting. It really means a lot. One step. One day at a time. That's all I can do. Dr. Bitsko called me this morning and we talked so that was helpful. One more day of treatment till the weekend. And two more days till we get to see DADDY! Yay!
Showing posts with label Proton Center. Show all posts
Showing posts with label Proton Center. Show all posts
Thursday, August 6, 2009
Tuesday, August 4, 2009
Update and Quirky Charlotte Observations and Sayings
It's been an emotional couple of days for me, but in a subdued way. I'm not totally upset or anything and I'm not really in a bad place. It's weird and difficult to explain. Like everything else with this journey, running the marathon is exhausting. And this jaunt in Houston is like a mini-marathon within the marathon. It's weird to be out of familiar surroundings (although after a while everything here starts to look familiar and "feel" like home). It's strange to not have access to a car 24/7 (and yet strangely liberating). It's unusual for me not to be uber-busy and always running to one thing or another. Yet that is probably a good change. If it weren't for the fact that I'm hanging out in medical facilities almost every day, this would almost be a vacation. It's definitely an opportunity for me to relax a little. I still have to think about work but that only takes up about 10% of my day (as opposed to the 60-70% of my day when I'm in Richmond). I've done more "reading for pleasure" in the last few weeks than I've done all year. And that's a very good thing.
Then there's the cancer factor. You meet families every day. We meet some at the RMH. We meet others in clinic. There's overlap (those who are living at RMH AND getting treatment at MDA). You hear their stories and you can empathize. Some have been on the journey much longer than you, others are just starting (and six months in, I feel like such a veteran). Many are here because (like us) something wasn't working and they've come here for answers. Their hospitals and medical teams back home did all they can with their resources and sent them here. Some stories are inspirational and others seem so bleak that your heart breaks. And you worry if down the line your story could echo theirs. I met a 16 year old girl yesterday who has been battling medulloblastoma with remissions and recurrences for over 8 years. Scary.
Everyone seems to deal with their own personal trauma in their own way (of course) and we slug along. The parents exchange knowing looks, sighs, and smiles. Awake at 7 AM...off to the grind of the clinic...shuttling around to appointments all day...home to dinner. And the kids play and laugh...and cry. Like I said, it's surreal and almost hard to explain.
I very much miss Roger. It's difficult for us to be apart. We are usually each other's sounding boards and even though we can talk/skype every night and text throughout the day, it's not the same as being there. Fortunately, Aunt B, Aunt Lynn, and Uncle Terry will be here Saturday, closely followed by Roger, and I am planning a date for just the two of us Saturday night. We just need some together time.
yesterday, Charlotte actually broke down crying as we were waiting for proton therapy because she (finally) decided she was hungry. I told her she couldn't eat and she just bawled. Today was better. I let her sleep as long as she wanted and she didn't get up till after 9 AM. She also ate some cheddar bunnies (thanks Aunt Rebecca!) right before bed so I think/hope that helped. She's been very tired and clingy. Still cries at the least little thing but she is eating ok and her weight is still stable. Nothing major in the way of symptoms. The medical teams just marvel at her every step of the way. Surprisingly, her hair is not thinning and her skin still looks ok (it can get burned/red or very thin and translucent) but that can be stable for a while and then change pretty rapdly. Good progress on the regularity front too. PLUS, miracle of miracles, we actually got in and out of radiation on time today!
I made the mistake of trying to walk to the proton center this morning. It really didn't seem that hot at 10 AM but halfway there, I was soaking in sweat. Didn't help that I was carrying a pretty heavy backpack and pushing a stroller. I needed the exercise and the shuttle schedule wasn't really jiving with our schedule so I figured it wouldn't be too bad. It was less than a mile walk. I made it but I was DRENCHED by the time I got there. That was my workout. Charlotte was fine (she got to ride...in the shade, no less). Needless to say, we took the shuttle home. Heard on the radio we might set a record for temp her today. Somewhere near 100. Geez!
So that's all the news I have for today. We're just hanging around waiting for dinner. Thanks for all the cards, letters, and care packages. Charlotte enjoys reading all the cards. We got a very funny Hawaiian postcard yesterday from her friend Bridget and it made her laugh.
Just heard that the Bonitas made it back to Tennessee safely. Good to hear! Love to everyone!
Rachel and CJ
Update:
And now it's time for "quirky Charlotte observations and sayings":
1. She likes adding a -k to the end of words, particularly saying "O-cake" instead of "O-K". She also likes playing with word sounds so if I say "mish mash" she'll say "bish bash", etc. What good phonological skills!
2. As mentioned before, she LOVES to retell the plots of some of her favorite TV shows and movies. As she is falling asleep some nights, she will be quiet for the longest time (you'll think she's asleep) and then out of the blue she will tell you some plot point from Diego or Blue's latest adventure.
3. She has developed this odd habit of not wanting to eat any "broken" food. She won't eat goldfish that are missing pieces (not whole) and does the same with the cheddar bunnies. She always gives the broken pieces to me ("You can eat these mommy"). This applies to both anthropomorphic food (i.e., goldfish, bunnies) and other food (pieces of cheese).
4. The other day, out of the blue, she said, "Mommy, I really liked it when I was a baby in your tummy." Too funny! She also added, "After that, I was born and drank from your ninnies." As long as I don't have to explain to her how she got IN my tummy, we're good.
5. She has gotten REALLY good at pressing the buttons for the elevator when we go up and down at RMH and at the proton center. As daddy likes to say, "She's a born button pusher!"
6. Today, we were working on stretching her leg muscles and the doctor had recommended adding warm towels and/or lotion to the mix. I was working on her stretches and massaging her legs with the lotion and she says, "Mom, is this my spa treatment??". I told her that yes, indeed, it was and only princesses get to go to the spa!! She loved it!
So there is your amusement for the day. never a dull moment with this chick!!
Then there's the cancer factor. You meet families every day. We meet some at the RMH. We meet others in clinic. There's overlap (those who are living at RMH AND getting treatment at MDA). You hear their stories and you can empathize. Some have been on the journey much longer than you, others are just starting (and six months in, I feel like such a veteran). Many are here because (like us) something wasn't working and they've come here for answers. Their hospitals and medical teams back home did all they can with their resources and sent them here. Some stories are inspirational and others seem so bleak that your heart breaks. And you worry if down the line your story could echo theirs. I met a 16 year old girl yesterday who has been battling medulloblastoma with remissions and recurrences for over 8 years. Scary.
Everyone seems to deal with their own personal trauma in their own way (of course) and we slug along. The parents exchange knowing looks, sighs, and smiles. Awake at 7 AM...off to the grind of the clinic...shuttling around to appointments all day...home to dinner. And the kids play and laugh...and cry. Like I said, it's surreal and almost hard to explain.
I very much miss Roger. It's difficult for us to be apart. We are usually each other's sounding boards and even though we can talk/skype every night and text throughout the day, it's not the same as being there. Fortunately, Aunt B, Aunt Lynn, and Uncle Terry will be here Saturday, closely followed by Roger, and I am planning a date for just the two of us Saturday night. We just need some together time.
yesterday, Charlotte actually broke down crying as we were waiting for proton therapy because she (finally) decided she was hungry. I told her she couldn't eat and she just bawled. Today was better. I let her sleep as long as she wanted and she didn't get up till after 9 AM. She also ate some cheddar bunnies (thanks Aunt Rebecca!) right before bed so I think/hope that helped. She's been very tired and clingy. Still cries at the least little thing but she is eating ok and her weight is still stable. Nothing major in the way of symptoms. The medical teams just marvel at her every step of the way. Surprisingly, her hair is not thinning and her skin still looks ok (it can get burned/red or very thin and translucent) but that can be stable for a while and then change pretty rapdly. Good progress on the regularity front too. PLUS, miracle of miracles, we actually got in and out of radiation on time today!
I made the mistake of trying to walk to the proton center this morning. It really didn't seem that hot at 10 AM but halfway there, I was soaking in sweat. Didn't help that I was carrying a pretty heavy backpack and pushing a stroller. I needed the exercise and the shuttle schedule wasn't really jiving with our schedule so I figured it wouldn't be too bad. It was less than a mile walk. I made it but I was DRENCHED by the time I got there. That was my workout. Charlotte was fine (she got to ride...in the shade, no less). Needless to say, we took the shuttle home. Heard on the radio we might set a record for temp her today. Somewhere near 100. Geez!
So that's all the news I have for today. We're just hanging around waiting for dinner. Thanks for all the cards, letters, and care packages. Charlotte enjoys reading all the cards. We got a very funny Hawaiian postcard yesterday from her friend Bridget and it made her laugh.
Just heard that the Bonitas made it back to Tennessee safely. Good to hear! Love to everyone!
Rachel and CJ
Update:
And now it's time for "quirky Charlotte observations and sayings":
1. She likes adding a -k to the end of words, particularly saying "O-cake" instead of "O-K". She also likes playing with word sounds so if I say "mish mash" she'll say "bish bash", etc. What good phonological skills!
2. As mentioned before, she LOVES to retell the plots of some of her favorite TV shows and movies. As she is falling asleep some nights, she will be quiet for the longest time (you'll think she's asleep) and then out of the blue she will tell you some plot point from Diego or Blue's latest adventure.
3. She has developed this odd habit of not wanting to eat any "broken" food. She won't eat goldfish that are missing pieces (not whole) and does the same with the cheddar bunnies. She always gives the broken pieces to me ("You can eat these mommy"). This applies to both anthropomorphic food (i.e., goldfish, bunnies) and other food (pieces of cheese).
4. The other day, out of the blue, she said, "Mommy, I really liked it when I was a baby in your tummy." Too funny! She also added, "After that, I was born and drank from your ninnies." As long as I don't have to explain to her how she got IN my tummy, we're good.
5. She has gotten REALLY good at pressing the buttons for the elevator when we go up and down at RMH and at the proton center. As daddy likes to say, "She's a born button pusher!"
6. Today, we were working on stretching her leg muscles and the doctor had recommended adding warm towels and/or lotion to the mix. I was working on her stretches and massaging her legs with the lotion and she says, "Mom, is this my spa treatment??". I told her that yes, indeed, it was and only princesses get to go to the spa!! She loved it!
So there is your amusement for the day. never a dull moment with this chick!!
Friday, July 31, 2009
Busy Couple of Days
It's been a busy couple of days. The rest of Thursday went off without a hitch (so to speak) and she actually got in to Proton Therapy only 15 minutes later than her appointment time. A new record, I think. After that, we went over to the Galleria Mall again so Charlotte could watch the ice skaters. She really enjoys this. Plus it's nice and cool by the ice rink. We also found a Sanrio store (home of Hello Kitty!!) and had dinner at Rainforest Cafe. It was good food and Charlotte liked watching the animatronic "wild" animals putting on a show with their noises and antics.
After that, we went back to the camping truck because Juanita's son Phillip was going to appear on the Speed Channel on the show Pinks All Out. It's a drag racing show and this episode was in Texas (he lives in Lubbock). He raced his green pickup truck (most of these cars are classic, souped up dragsters) and actually made it into the top 8.
Went back "home" and Charlotte wound down with an evening of books, videos, and playing with her horses. That has become a favorite diversion. She puts them in the green drawstring bag. Then she takes them out and puts them in the "barn" (the wooden shadow box they came in). Then she takes them out and moves them around the room. Then she puts them back in the bag. It's like the shoelaces but a new obsession.
We got some great packages in the mail including a set of about 30 craft projects with all the materials (conveniently placed in individual ziploc bags) from my Aunt Shelley. Just have to get her interested in those. She did like that they came in a plastic container with a pink and purple lid!!
She refused to take her accutane last night (I didn't do a very good job of hiding it). Oh well. This morning I had to wake her up and she started the day kind of grumpy. Again, I couldn't get her to take the medicine (this time in applesauce) and about the time Grandpa showed up, she had gone into a full-blown crying jag. Just very emotional. She screamed, "I MISS MY DADDY!!" and just sobbed. Poor thing. She has been so much more emotional lately. Some of that is actually a side effect of treatment (especially the accutane) but I think it is more a side effect of just STRESS. Her life is so out of control and I think that a lot of it catches up with her at odd moments so that the least little thing sets her off. It's become kind of a pattern. She usually calms down after a little while but I've learned not to push her to do something unless it's really vital.
We decided to head off to the Science Museum anyway and see how the day went. She definitely calmed after getting in the car and once we were to the museum, she was fine. Thanks to our Houston connections, we pretty much had free tickets to the exhibits we wanted to see. We spent the morning checking out the main exhibits (dinosaurs, other animals, a great Native American exhibit, a fantastic seashell collection, and a gem and mineral collection that was beautiful). We also went to see the butterflies. Very impressive as well and I think this was her favorite part. Charlotte was tolerant of most of the events but if I stopped at any one exhibit for too long she would say (from the stroller) "Keep pushing, mom!".
We left the museum after a huge rainstorm (that we thankfully missed) and headed over to the PTC. One of the patients (an older gentleman) who was having his last treatment was treating the other patients and their guests to a concert. He and his wife are musicians. She played piano and he played saxophone and fiddle and sang with a drum track behind them. It was pretty good and the crowd was lively. Charlotte even bopped to the music a bit. She went in kinda late again today (not too bad) and we did our "old routine": Go get some lunch, run a few errands at Target, etc. and head back to the PTC. She woke about 4 and we went back to the camping truck for dinner. I did manage to get BOTH doses of accutane into her by the day's end so that was good. Now she's reading her books and settling in for the night. I think we're going to head to Galveston tomorrow while we have family and a car available.
Good night all!! One week down, one more to go (for me) and 4 more to go (for all of us).
PS: Charlotte Says, "HAPPY BIRTHDAY AUNT B!!!!"
Rachel
After that, we went back to the camping truck because Juanita's son Phillip was going to appear on the Speed Channel on the show Pinks All Out. It's a drag racing show and this episode was in Texas (he lives in Lubbock). He raced his green pickup truck (most of these cars are classic, souped up dragsters) and actually made it into the top 8.
Went back "home" and Charlotte wound down with an evening of books, videos, and playing with her horses. That has become a favorite diversion. She puts them in the green drawstring bag. Then she takes them out and puts them in the "barn" (the wooden shadow box they came in). Then she takes them out and moves them around the room. Then she puts them back in the bag. It's like the shoelaces but a new obsession.
We got some great packages in the mail including a set of about 30 craft projects with all the materials (conveniently placed in individual ziploc bags) from my Aunt Shelley. Just have to get her interested in those. She did like that they came in a plastic container with a pink and purple lid!!
She refused to take her accutane last night (I didn't do a very good job of hiding it). Oh well. This morning I had to wake her up and she started the day kind of grumpy. Again, I couldn't get her to take the medicine (this time in applesauce) and about the time Grandpa showed up, she had gone into a full-blown crying jag. Just very emotional. She screamed, "I MISS MY DADDY!!" and just sobbed. Poor thing. She has been so much more emotional lately. Some of that is actually a side effect of treatment (especially the accutane) but I think it is more a side effect of just STRESS. Her life is so out of control and I think that a lot of it catches up with her at odd moments so that the least little thing sets her off. It's become kind of a pattern. She usually calms down after a little while but I've learned not to push her to do something unless it's really vital.
We decided to head off to the Science Museum anyway and see how the day went. She definitely calmed after getting in the car and once we were to the museum, she was fine. Thanks to our Houston connections, we pretty much had free tickets to the exhibits we wanted to see. We spent the morning checking out the main exhibits (dinosaurs, other animals, a great Native American exhibit, a fantastic seashell collection, and a gem and mineral collection that was beautiful). We also went to see the butterflies. Very impressive as well and I think this was her favorite part. Charlotte was tolerant of most of the events but if I stopped at any one exhibit for too long she would say (from the stroller) "Keep pushing, mom!".
We left the museum after a huge rainstorm (that we thankfully missed) and headed over to the PTC. One of the patients (an older gentleman) who was having his last treatment was treating the other patients and their guests to a concert. He and his wife are musicians. She played piano and he played saxophone and fiddle and sang with a drum track behind them. It was pretty good and the crowd was lively. Charlotte even bopped to the music a bit. She went in kinda late again today (not too bad) and we did our "old routine": Go get some lunch, run a few errands at Target, etc. and head back to the PTC. She woke about 4 and we went back to the camping truck for dinner. I did manage to get BOTH doses of accutane into her by the day's end so that was good. Now she's reading her books and settling in for the night. I think we're going to head to Galveston tomorrow while we have family and a car available.
Good night all!! One week down, one more to go (for me) and 4 more to go (for all of us).
PS: Charlotte Says, "HAPPY BIRTHDAY AUNT B!!!!"
Rachel
Wednesday, July 29, 2009
Another Good Day
Another good day...except NO POOP (I feel like I'm becoming a broken record).
She slept in again this morning and barely got up when we were jetting off to the clinic. Had a nice walk over to MDA and they got us in almost immediately (plus we were early!). Dr. Wolff spent a great deal of time with us following up on things. We are still trying to track down the MRI that Joann sent so while we were talking with Dr. Wolff, he zipped an email off to Dr. Khan, Joann, Dr. Mahajan...pretty much anyone involved in her care...trying to track down the MRI. Also found out that she should have been on the accutane over the weekend. Again, typical hospital miscommunication where we thought we were waiting for the meds to be compounded and they assumed we would give it to her ourselves with our stash. I told him we would start giving her the meds this afternoon and he wants to see us again tomorrow to get the Accutane situation straightened out. He also said that he wants to get her blood drawn at least 3 times a week instead of just once per week (just in case). He was concerned about the non-poop issue and wanted to order an enema. He said I could give it myself but I didnt' feel comfortable doing that for multiple reasons:
1. I'd never given her one myself (just witnessed and assisted the nurses when she'd had them before) AND (more importantly)
2. I don't need her associating MOMMY with any more negative procedures.
The only problem was, we were only about an hour away from her proton radiation time and they didn't want to give her an enema and then have her "lose it all" on the radiation table. That could cause a whole host of problems. So we left with an appointment for 8 AM tomorrow and a prescription for lactulose which she started this afternoon. Fortunately, she took all her meds (the accutane went in the applesauce and the lactulose went into the chocolate milk) so we're good for tonight. Who knows. Maybe she'll poop before tomorrow (we can only hope...)
After the clinic, we headed over to proton center and didn't have to wait TOO long. They only took her 15 minutes late today. That's progress. Unfortunately, someone was celebrating the end of their treatment. Good for them, I guess, but there was food EVERYWHERE in the lobby. Charlotte didn't seem to mind but I really just about lost it when this very chatty woman who was waiting for her husband came over with cookies and some kind of pudding in her hand. She not only offered food but when I politely told her WHY Charlotte couldn't have any food, she continued to hold the food in front of her face and engage me in a huge conversation about her life. Oh joy. No offense to her, but I didn't really want to hear her life story and I REALLY didn't want her hanging food in front of my daughter's face (or mine for that matter since I was hungry myself).
Sometimes I really understand Charlotte's seemingly antisocial behavior. She's really not antisocial, per say, but she definitely likes her alone time. And I can totally understand that. Sometimes it's nice just to sit there with a book or a puzzle and not talk about cancer or medical treatment, or...whatever.
Anyway, after she was called in to the gantry and put to sleep, Grandpa and I went to get her prescription filled and get me some lunch. We timed it all just right and came back to find her in recovery. We were out of there by four pm. I think that's a record.
We came back to the house and she took all her meds (as mentioned) and ate some good lunch/dinner. Now it should be my turn for dinner soon. Rumor has it Ronald McDonald is coming to visit tonight!
Update:
POOOP!!!!
Yes, ladies and gentlemen, Charlotte has pooped. Maybe the lactulose finally kicked things into gear. (Plus all the "prayers for poop"!) It was kind of small (considering the amount she's consumed in the past week) but NOT hard (yay) and things are finally moving again. Maybe we can even avoid the enema tomorrow. See what the doc says.
She also ate even more tonight, having some cheese, chocolate milk, and bread crusts from the garlic toast (she likes the crust, not the soft middle). She watched the Ronald McDonald magic show from a distance but didn't want to get a picture with him or meet him.
On a slightly concerning note (it's always something, ain't it?), she is having trouble bending her knees. She's refusing to bend down to pick anything up or bend down to be changed. Have to check again with the doc about that. Apparently, pediatric PT services are hard to come by at MDA so I'm not sure what we can expect.
Have a good evening, y'all!!
Rachel
She slept in again this morning and barely got up when we were jetting off to the clinic. Had a nice walk over to MDA and they got us in almost immediately (plus we were early!). Dr. Wolff spent a great deal of time with us following up on things. We are still trying to track down the MRI that Joann sent so while we were talking with Dr. Wolff, he zipped an email off to Dr. Khan, Joann, Dr. Mahajan...pretty much anyone involved in her care...trying to track down the MRI. Also found out that she should have been on the accutane over the weekend. Again, typical hospital miscommunication where we thought we were waiting for the meds to be compounded and they assumed we would give it to her ourselves with our stash. I told him we would start giving her the meds this afternoon and he wants to see us again tomorrow to get the Accutane situation straightened out. He also said that he wants to get her blood drawn at least 3 times a week instead of just once per week (just in case). He was concerned about the non-poop issue and wanted to order an enema. He said I could give it myself but I didnt' feel comfortable doing that for multiple reasons:
1. I'd never given her one myself (just witnessed and assisted the nurses when she'd had them before) AND (more importantly)
2. I don't need her associating MOMMY with any more negative procedures.
The only problem was, we were only about an hour away from her proton radiation time and they didn't want to give her an enema and then have her "lose it all" on the radiation table. That could cause a whole host of problems. So we left with an appointment for 8 AM tomorrow and a prescription for lactulose which she started this afternoon. Fortunately, she took all her meds (the accutane went in the applesauce and the lactulose went into the chocolate milk) so we're good for tonight. Who knows. Maybe she'll poop before tomorrow (we can only hope...)
After the clinic, we headed over to proton center and didn't have to wait TOO long. They only took her 15 minutes late today. That's progress. Unfortunately, someone was celebrating the end of their treatment. Good for them, I guess, but there was food EVERYWHERE in the lobby. Charlotte didn't seem to mind but I really just about lost it when this very chatty woman who was waiting for her husband came over with cookies and some kind of pudding in her hand. She not only offered food but when I politely told her WHY Charlotte couldn't have any food, she continued to hold the food in front of her face and engage me in a huge conversation about her life. Oh joy. No offense to her, but I didn't really want to hear her life story and I REALLY didn't want her hanging food in front of my daughter's face (or mine for that matter since I was hungry myself).
Sometimes I really understand Charlotte's seemingly antisocial behavior. She's really not antisocial, per say, but she definitely likes her alone time. And I can totally understand that. Sometimes it's nice just to sit there with a book or a puzzle and not talk about cancer or medical treatment, or...whatever.
Anyway, after she was called in to the gantry and put to sleep, Grandpa and I went to get her prescription filled and get me some lunch. We timed it all just right and came back to find her in recovery. We were out of there by four pm. I think that's a record.
We came back to the house and she took all her meds (as mentioned) and ate some good lunch/dinner. Now it should be my turn for dinner soon. Rumor has it Ronald McDonald is coming to visit tonight!
Update:
POOOP!!!!
Yes, ladies and gentlemen, Charlotte has pooped. Maybe the lactulose finally kicked things into gear. (Plus all the "prayers for poop"!) It was kind of small (considering the amount she's consumed in the past week) but NOT hard (yay) and things are finally moving again. Maybe we can even avoid the enema tomorrow. See what the doc says.
She also ate even more tonight, having some cheese, chocolate milk, and bread crusts from the garlic toast (she likes the crust, not the soft middle). She watched the Ronald McDonald magic show from a distance but didn't want to get a picture with him or meet him.
On a slightly concerning note (it's always something, ain't it?), she is having trouble bending her knees. She's refusing to bend down to pick anything up or bend down to be changed. Have to check again with the doc about that. Apparently, pediatric PT services are hard to come by at MDA so I'm not sure what we can expect.
Have a good evening, y'all!!
Rachel
Tuesday, July 28, 2009
She is Doing Pretty Well
Another good day...except NO POOP!! Otherwise, she is doing pretty well. She slept about 11 hours last night. I let her sleep as long as she wanted to reduce the amount of time that she is NPO and she got up a little after 9. That gave me the morning to write a few thank you notes, read my book, and toodle around on the internet. Plus, I got to eat my breakfast without having her watch me.
We got up and decided to walk over to the MDA main building for the shuttle to the proton center. She walked over a block all by herself (her choice). While she was slow, she did a great job. It actually wasn't unbearably hot as there has been a steady breeze blowing for the last 24 hours. Still hot but at least breezy and the walk from RMH to MDA is pretty well shaded. We caught the shuttle and made it over to the proton center with plenty of time and they got her right in for her appointment with Dr. Woo. The ladies at the center (all the nurses and assistants) make such a big deal over her. Today she was extra cute with her superstar sunglasses. Dr. Woo didn't seem ultra concerned with her lack of poop and was happy that her weight was stable and she doesn't seem to have any other aversive symptoms related to the proton therapy. After he was happy seeing her, we were given the option to go back to the lobby or hang out in the exam room. CJ chose to stay put so I read my book while she read books and watched videos and was greeted intermittently by the proton therapy staff.
Grandpa and Juanita arrived around 12:30/1 PM and she went out to greet them. Then she decided she wanted to go upstairs and check out the playroom there. Boy, was our timing good. The child life specialist had just arrived with some new toys, one of which was a pink and purple doodle-pro that she said she picked out "with Charlotte in mind". Charlotte played with that for quite a while and then read a few books. Finally, around 2:30 (an hour late...again) they came to get her. Off to lunch again for mommy and she went to be irradiated.
We came back and she had just gone into the recovery room and woke up about a half hour later. We went back to the "camping truck" at the RV park for dinner and Charlotte ate a whole ear of corn, some chicken, and some chocolate pie. She was pretty talkative and has been in a relatively good mood (despite the constipation).
While exploring the camping truck, Charlotte found a honeydew melon and decided it would be fun to put a hat on it. Then we found some markers and decorated it. Result: Grandpa Honeydew. Pretty cute and we all had a good laugh.
We came back to RMH and a gift was waiting for us: Aunt Lynn had donated one of those Koala Care diaper changing tables for the RMH and the company had matched it with an additional gift (and covered the shipping). Hooray and thanks, Aunt Lynn. I am sure the folks at RMH will be appreciative.
Now Charlotte and I just finished having a heart to heart about pooping. I am becoming more and more convinced that she is holding in her poop as she talks about "I don't like to poop. I only like to pee.". We have talked about how necessary it is to poop to stay healthy and that if she doesn't poop she's going to end up back in the hospital. Sigh. We'll see if it works.
Talked to Roger briefly but it sounds like he has had a good day. We are back to the clinic and then back to proton therapy tomorrow. At least we have a routine.
Rachel
We got up and decided to walk over to the MDA main building for the shuttle to the proton center. She walked over a block all by herself (her choice). While she was slow, she did a great job. It actually wasn't unbearably hot as there has been a steady breeze blowing for the last 24 hours. Still hot but at least breezy and the walk from RMH to MDA is pretty well shaded. We caught the shuttle and made it over to the proton center with plenty of time and they got her right in for her appointment with Dr. Woo. The ladies at the center (all the nurses and assistants) make such a big deal over her. Today she was extra cute with her superstar sunglasses. Dr. Woo didn't seem ultra concerned with her lack of poop and was happy that her weight was stable and she doesn't seem to have any other aversive symptoms related to the proton therapy. After he was happy seeing her, we were given the option to go back to the lobby or hang out in the exam room. CJ chose to stay put so I read my book while she read books and watched videos and was greeted intermittently by the proton therapy staff.
Grandpa and Juanita arrived around 12:30/1 PM and she went out to greet them. Then she decided she wanted to go upstairs and check out the playroom there. Boy, was our timing good. The child life specialist had just arrived with some new toys, one of which was a pink and purple doodle-pro that she said she picked out "with Charlotte in mind". Charlotte played with that for quite a while and then read a few books. Finally, around 2:30 (an hour late...again) they came to get her. Off to lunch again for mommy and she went to be irradiated.
We came back and she had just gone into the recovery room and woke up about a half hour later. We went back to the "camping truck" at the RV park for dinner and Charlotte ate a whole ear of corn, some chicken, and some chocolate pie. She was pretty talkative and has been in a relatively good mood (despite the constipation).
While exploring the camping truck, Charlotte found a honeydew melon and decided it would be fun to put a hat on it. Then we found some markers and decorated it. Result: Grandpa Honeydew. Pretty cute and we all had a good laugh.
We came back to RMH and a gift was waiting for us: Aunt Lynn had donated one of those Koala Care diaper changing tables for the RMH and the company had matched it with an additional gift (and covered the shipping). Hooray and thanks, Aunt Lynn. I am sure the folks at RMH will be appreciative.
Now Charlotte and I just finished having a heart to heart about pooping. I am becoming more and more convinced that she is holding in her poop as she talks about "I don't like to poop. I only like to pee.". We have talked about how necessary it is to poop to stay healthy and that if she doesn't poop she's going to end up back in the hospital. Sigh. We'll see if it works.
Talked to Roger briefly but it sounds like he has had a good day. We are back to the clinic and then back to proton therapy tomorrow. At least we have a routine.
Rachel
Monday, July 27, 2009
An Update
Doing a whole lotta nuthin' sure makes me tired!
Charlotte didn't settle in to sleep until after midnight last night (sheesh). I did manage to get her to eat a few veggie straws before bed in hopes that it would sustain her a little longer during the day. I woke up and got myself ready, going downstairs while she was still sleeping to eat breakfast. I figured a hearty breakfast would help me hold out till proton therapy so I ate the leftovers from Roger's Mexican lunch the day before. They were good....and filling!
Then I roused the princess and we set off for the children's cancer center. We didn't have an appointment but Roger insisted that I should just "show up" and they'd work us in. About 10 AM they got our labs (we had come in about 8:30) and about 11:30 Reh, our nurse, let us know that her labs looked pretty good and instead of seeing a doc at the clinic we should just go ahead over to the proton center. Her weekly "checkup" with the radiation oncologist was scheduled for 11:30 and Reh figured as long as some medical professional was following up with her, they didn't need to see her till Wednesday.
So we trudged over to the proton center. The shuttle ride was not bad, actually. Got there, checked in, they took her vitals, and we waited.
And waited.
And waited.
Finally I asked someone what was up and they looked into it. Turns out that Dr. Mahajan is out this week and so Charlotte is supposed to see Dr. Woo and HE is seeing all his patients on Tuesday. Nobody had told us this, but it was on our newly revised schedule. BUT the newly revised scheduled had not been posted online. I was told the solution to this is to get a new printout of the schedule every Monday morning to assure accuracy. I'm not sure how I can get a printout before coming TO the proton center for my Monday appointment but somehow that has escaped everyone else's logic. Maybe the radiation gets to their brains a little in this place.
Anyway, so we were just MEGA early for her proton appointment that was scheduled at 1:30 (and of course, in true form, they didn't see her till 2:30). I did ask about moving up her time slot but they don't have anything available earlier for two weeks when she will then have a 10:30 AM slot.
Through all this, Charlotte never complained once. She never asked for food. Never said she was hungry. We did snuggle and cuddle a few times, which was nice given the cold shoulder she usually passes my way. We read some books and she entertained herself in the play areas. Finally it was her turn and Grandpa and I headed off in search of lunch for me (at 3 PM). She finally roused around 5-ish and we headed back to RMH for dinner. She did eat some cheese slices, applesauce, and a bunch of crackers tonight. And some chocolate milk. Her belly is getting VERY full and kind of rigid. She has not been able to bend down all day and she tells me that it hurts her tummy. the kid needs to POOP!! We keep giving her mag citrate and getting her to walk as much as possible. She told me that she "doesn't like to poop" so I hope she's not holding it in voluntarily. That could be a problem. I told her that she doesn't get to watch her "new favorite" goodnight video until she goes poopie so hopefully we will get results soon.
Other than that, she doesn't seem to be demonstrating any ill effects from the radiation (knock on wood). She is full of storytelling today and the bulk of our conversations revolve around her retelling some facts or plot points from Dora, Diego, Sid the Science Kid, SuperWhy, etc. It's very cute! Especially when she says things like, "Condors are the largest flying birds in the world."
Today I was the chauffer (stroller pusher), chaperone, and master chef. Plus I got in some light reading. Nabbed a book from the book exchange that has been very good so far. It's the newest Wally Lamb book and I've enjoyed his other two novels. We'll see. Oh, and I did payroll. The romp n' roll employees will be happy. Thank goodness for remote internet and quickbooks online. So I actually did some "work" today too.
Charlotte looked absolutely ADORABLE in the dress Aunt Phyllis sent. She wore it today and wowed everyone. She was a purple princess today. I will attach a photo. In this picture, she is making a grilled cheese sandwich using an iron. Very creative, I thought!
We did get to end our day with a skype chat with Daddy. That was fun and Charlotte was actually engaging for a few minutes. Seems like things are going well in VA as well. One day down....how many more to go? September seems a LONG way away.
Charlotte didn't settle in to sleep until after midnight last night (sheesh). I did manage to get her to eat a few veggie straws before bed in hopes that it would sustain her a little longer during the day. I woke up and got myself ready, going downstairs while she was still sleeping to eat breakfast. I figured a hearty breakfast would help me hold out till proton therapy so I ate the leftovers from Roger's Mexican lunch the day before. They were good....and filling!
Then I roused the princess and we set off for the children's cancer center. We didn't have an appointment but Roger insisted that I should just "show up" and they'd work us in. About 10 AM they got our labs (we had come in about 8:30) and about 11:30 Reh, our nurse, let us know that her labs looked pretty good and instead of seeing a doc at the clinic we should just go ahead over to the proton center. Her weekly "checkup" with the radiation oncologist was scheduled for 11:30 and Reh figured as long as some medical professional was following up with her, they didn't need to see her till Wednesday.
So we trudged over to the proton center. The shuttle ride was not bad, actually. Got there, checked in, they took her vitals, and we waited.
And waited.
And waited.
Finally I asked someone what was up and they looked into it. Turns out that Dr. Mahajan is out this week and so Charlotte is supposed to see Dr. Woo and HE is seeing all his patients on Tuesday. Nobody had told us this, but it was on our newly revised schedule. BUT the newly revised scheduled had not been posted online. I was told the solution to this is to get a new printout of the schedule every Monday morning to assure accuracy. I'm not sure how I can get a printout before coming TO the proton center for my Monday appointment but somehow that has escaped everyone else's logic. Maybe the radiation gets to their brains a little in this place.
Anyway, so we were just MEGA early for her proton appointment that was scheduled at 1:30 (and of course, in true form, they didn't see her till 2:30). I did ask about moving up her time slot but they don't have anything available earlier for two weeks when she will then have a 10:30 AM slot.
Through all this, Charlotte never complained once. She never asked for food. Never said she was hungry. We did snuggle and cuddle a few times, which was nice given the cold shoulder she usually passes my way. We read some books and she entertained herself in the play areas. Finally it was her turn and Grandpa and I headed off in search of lunch for me (at 3 PM). She finally roused around 5-ish and we headed back to RMH for dinner. She did eat some cheese slices, applesauce, and a bunch of crackers tonight. And some chocolate milk. Her belly is getting VERY full and kind of rigid. She has not been able to bend down all day and she tells me that it hurts her tummy. the kid needs to POOP!! We keep giving her mag citrate and getting her to walk as much as possible. She told me that she "doesn't like to poop" so I hope she's not holding it in voluntarily. That could be a problem. I told her that she doesn't get to watch her "new favorite" goodnight video until she goes poopie so hopefully we will get results soon.
Other than that, she doesn't seem to be demonstrating any ill effects from the radiation (knock on wood). She is full of storytelling today and the bulk of our conversations revolve around her retelling some facts or plot points from Dora, Diego, Sid the Science Kid, SuperWhy, etc. It's very cute! Especially when she says things like, "Condors are the largest flying birds in the world."
Today I was the chauffer (stroller pusher), chaperone, and master chef. Plus I got in some light reading. Nabbed a book from the book exchange that has been very good so far. It's the newest Wally Lamb book and I've enjoyed his other two novels. We'll see. Oh, and I did payroll. The romp n' roll employees will be happy. Thank goodness for remote internet and quickbooks online. So I actually did some "work" today too.
Charlotte looked absolutely ADORABLE in the dress Aunt Phyllis sent. She wore it today and wowed everyone. She was a purple princess today. I will attach a photo. In this picture, she is making a grilled cheese sandwich using an iron. Very creative, I thought!
We did get to end our day with a skype chat with Daddy. That was fun and Charlotte was actually engaging for a few minutes. Seems like things are going well in VA as well. One day down....how many more to go? September seems a LONG way away.
Saturday, July 25, 2009
Charlotte has Done So Well today!
Charlotte has done so well today! She didn’t eat much of anything this morning before she had to go NPO but she did drink a container of apple juice at a little after 11. (fudged the 11 o’clock cut-off just a little). The sugar in the apple juice must have set her off because she came alive after that. Chatting and telling everyone plots of shows/books, who in our family is related to whom, and general CJ stuff like that. When the Bonitas came by, I walked to The House and did some domestic stuff including making CJ’s bed, check the mail, stuff like that. Also got a change of clothes for me. The Bayer folks were providing lunch today and were handing out bags with little teddy bears in them. They also gave out little squeezy stressball eagles. Who would need something like that? :-P
When I got back to CJ’s room, I heard that she had taken the Bonitas on quite the little jaunt. She had been on a ride around the floor in the wagon already but when they took her out to go back into the room, they found she wasn’t quite done and she led them off on a walking tour of the floor this time, followed by yet another ride in the wagon.
Then it was time for the ambulance ride to the proton center which has already become old hat for her. The crew was different and the woman could have been our neighbor, Abby’s, big sister. Charlotte didn’t see the resemblance.
At the proton center, Charlotte played in the toy area and made me give up my shoe for “lace time.” She has the most disgustingly sweet, Shirley Temple, cavities for the rest of your life way of asking, “Daddy may I PLEASE play with your shoestring?” Then after she completely deconstructs my shoe, she turns around and asks, “Is it ok if I play with your shoestring?” I mean, who can resist it. The police should isolate it and use it as a non-lethal weapon. “Mr. Bad Guy, would you PLEASE freeze?” “If done right, no can defend.” (Movie trivia time…)
After a while of great playtime, she ran out of steam and just wanted me to hold her on the couch in the lobby. But not just any couch, mind you. It HAD to be the couch we had chilled on (“on which we had chilled?”) every day we had been there. So we got settled with her wrapped up in the sheet we got from the recovery room and I must admit, I don’t mind doing it. Unfortunately, we had been settled no more than 10 minutes when they called us in.
The traditional singing of Frosty ensued. They’re starting to get pretty good at it and CJ sang along. Of course, it’s all about making her going to sleep a good experience. “If they go to sleep well, they wake up well.” It’s kind of a mantra here. All these treatment places have traditions and ways for patients and their families to stay focused on the end like the bell that chemo patients ring at the end of treatment (Dog! Dog! Dog!) Anyway, the proton center has a gong and they make these calendars for the patients that count down to the last treatment and they made a beautiful one for Charlotte.
Side note: That was actually the second time Frosty had been sung to her today. The other ambu-guy, Doug, had an earworm going that was really odd. “Santa Clause Is Coming To Town” was going through his head so I decided to manipulate him a little. I told him about Frosty and CJ and I sang the first verse. Buy the time we were done with the first set of “thumpity thump thump”s, we were at the center and Doug had a new earworm! (how does one do an evil face?) Olive Sacs would have a field day with this guy!
Treatment #4 (29 to go) went very well and we headed back to the hospital.
Then the munchy flood gates opened! After we got resettled, I pulled out mac n cheese, she ate it. Mandarin oranges? Gone! Snuck in some magnesium citrate. No hesitation. She ate pretzels, brownies, an entire chocolate milkshakeshake, a tortilla and she took her senna with almost no trouble!
This is a tale of two Charlotte’s. The difference between three days ago and now is so profound, even Dr. Wolf was forced to reconsider things. He came by last night (does the guy ever go home?) to see about CJ and was very happy with her progress. The neck is still stiff but whatever was making her nauseous and not interested in eating has passed. Yea! Looks like we may get out tomorrow (Saturday).
(It’s now Saturday and I will see my wife in just a few hours!)
Accutane is definitely the chemo drug happening starting Sat (today). Dr. Wolff wanted to start it last night but there wasn’t any in the hospital. Also, they’re going to compound it so we don’t have to worry about cutting the top off the pill and mixing it with something. The MRI from just after the third surgery hasn’t showed up yet so it’ll have to wait until next week to do the comparison.
Off to left field…Watching Pres. Obama talk about the newest education initiative. Lots of big ideas and fancy talk but I have yet to hear him say much about music. When is everyone going to realize how essential the arts, music in particular, are to education? More and more research comes out all the time saying how important music is to brain development, socialization, gross and fine motor skills, you name it. Multiple areas of the brain are utilized when experiencing/making music, parts of the brain actually grow larger when one studies music. You want a cause to support, get school boards and other LOCAL government officials to make the arts a priority in public schools instead of always making them the first thing to go.
OK, I’m done. Have a nice day. Fly safe and comfy, Dear.
When I got back to CJ’s room, I heard that she had taken the Bonitas on quite the little jaunt. She had been on a ride around the floor in the wagon already but when they took her out to go back into the room, they found she wasn’t quite done and she led them off on a walking tour of the floor this time, followed by yet another ride in the wagon.
Then it was time for the ambulance ride to the proton center which has already become old hat for her. The crew was different and the woman could have been our neighbor, Abby’s, big sister. Charlotte didn’t see the resemblance.
At the proton center, Charlotte played in the toy area and made me give up my shoe for “lace time.” She has the most disgustingly sweet, Shirley Temple, cavities for the rest of your life way of asking, “Daddy may I PLEASE play with your shoestring?” Then after she completely deconstructs my shoe, she turns around and asks, “Is it ok if I play with your shoestring?” I mean, who can resist it. The police should isolate it and use it as a non-lethal weapon. “Mr. Bad Guy, would you PLEASE freeze?” “If done right, no can defend.” (Movie trivia time…)
After a while of great playtime, she ran out of steam and just wanted me to hold her on the couch in the lobby. But not just any couch, mind you. It HAD to be the couch we had chilled on (“on which we had chilled?”) every day we had been there. So we got settled with her wrapped up in the sheet we got from the recovery room and I must admit, I don’t mind doing it. Unfortunately, we had been settled no more than 10 minutes when they called us in.
The traditional singing of Frosty ensued. They’re starting to get pretty good at it and CJ sang along. Of course, it’s all about making her going to sleep a good experience. “If they go to sleep well, they wake up well.” It’s kind of a mantra here. All these treatment places have traditions and ways for patients and their families to stay focused on the end like the bell that chemo patients ring at the end of treatment (Dog! Dog! Dog!) Anyway, the proton center has a gong and they make these calendars for the patients that count down to the last treatment and they made a beautiful one for Charlotte.
Side note: That was actually the second time Frosty had been sung to her today. The other ambu-guy, Doug, had an earworm going that was really odd. “Santa Clause Is Coming To Town” was going through his head so I decided to manipulate him a little. I told him about Frosty and CJ and I sang the first verse. Buy the time we were done with the first set of “thumpity thump thump”s, we were at the center and Doug had a new earworm! (how does one do an evil face?) Olive Sacs would have a field day with this guy!
Treatment #4 (29 to go) went very well and we headed back to the hospital.
Then the munchy flood gates opened! After we got resettled, I pulled out mac n cheese, she ate it. Mandarin oranges? Gone! Snuck in some magnesium citrate. No hesitation. She ate pretzels, brownies, an entire chocolate milkshakeshake, a tortilla and she took her senna with almost no trouble!
This is a tale of two Charlotte’s. The difference between three days ago and now is so profound, even Dr. Wolf was forced to reconsider things. He came by last night (does the guy ever go home?) to see about CJ and was very happy with her progress. The neck is still stiff but whatever was making her nauseous and not interested in eating has passed. Yea! Looks like we may get out tomorrow (Saturday).
(It’s now Saturday and I will see my wife in just a few hours!)
Accutane is definitely the chemo drug happening starting Sat (today). Dr. Wolff wanted to start it last night but there wasn’t any in the hospital. Also, they’re going to compound it so we don’t have to worry about cutting the top off the pill and mixing it with something. The MRI from just after the third surgery hasn’t showed up yet so it’ll have to wait until next week to do the comparison.
Off to left field…Watching Pres. Obama talk about the newest education initiative. Lots of big ideas and fancy talk but I have yet to hear him say much about music. When is everyone going to realize how essential the arts, music in particular, are to education? More and more research comes out all the time saying how important music is to brain development, socialization, gross and fine motor skills, you name it. Multiple areas of the brain are utilized when experiencing/making music, parts of the brain actually grow larger when one studies music. You want a cause to support, get school boards and other LOCAL government officials to make the arts a priority in public schools instead of always making them the first thing to go.
OK, I’m done. Have a nice day. Fly safe and comfy, Dear.
Friday, July 24, 2009
All is Much Better
We all had a much better night last night and day today. We keep getting rides in ambulances and I think Charlotte is developing a thing for one of the "Ambu-Guys," Isreal. It must be the ponytail, goatee and earring. Hey, wait a minute!!! ::-)
The Bonitas are uber-helpful as usual. When we got settled in the hospital room, Juanita stayed with Charlotte and Dad and I went to get dinner downstairs. It was wonderful because I got to have Chick-fil-a for the first time in 2 weeks or so. It was also bad because I haven’t had hardly any fast food in that amount of time so the fried food sure did a number on me! Still working that out (so to speak).
Sitting down with Dad was so strange. Mostly because I wasn’t sitting next to Charlotte and I wasn’t freaking out about anything. And boy, did I feel tired!
So this am she ate a little and we had a relatively quiet morning. She still seemed a little sullen but her fluids sure are "fluiding."
The ambulance folk showed up at about 1:30 to take CJ to the proton center this time Isreal came with Laura (who reminded me a huge amount of one of our fellow Romp n’ Roll franchise owners). This time we got there very early and waited for about an hour until our appointment time. Grandpa held her on his lap for most of that time. She sure loves her Grandpa!
After she went in (with the accompanying rendition of Frosty. I hope she doesn’t get sick of it but her little hand out for “STOP!” just tickles the staff to no end) the Bonitas and I went back to The House so I could check mail (stuff keeps coming in, thanks), get a few things, and eat. Juanita made me some amazingly good stew and we were treated to another big o’ hairy thunderstorm that dumped a large amount of rain on our area.
Radiation treatment #3 went fine and CJ was in the recovery room when we got back. The Bonitas (isn’t that a kind of sport fish?) had to go check on the dog and awnings on the RV so they left planning to meet back up at the hospital.
Not much else happened until the ambu-guys showed up to take us back. It was Laura and Isreal again (that guy keeps showing up! Gotta go clean my shotgun! If I had one, that is). One thing I’m going to say about the drivers, they have to have super senses of direction because the maze that is MDAnderson Cancer Center is mind boggling. I do pretty well with directions and I’ve been so turned around multiple times, if I had been alone, I would have ended up like Jack Nicholson in The Shining.
Charlotte was actually feeling much better and was chatting up a storm. Laura had never seen the real Charlotte and was amazed.
So after we got resettled in the hospital room, Dr. Wolff came by to do what he does and work out what he thought might be a good plan of action. The short-term plan is to keep watching her at least one more day, do the new routine of hang out here, ride the ambulance ( Isreal is off tomorrow so I don’t have to worry about him! ), and see how she improves. He was happy with the looseness of her legs but her neck is still stiff. She interacted with him pretty well and smiled for him. It definitely helps that he’s a friend of Dr. Kahn, “one of my favorite doctors!”
As far as the chemo goes, he is deferring to Dr. Mahajan (radiation oncologist) who feels uncomfortable having her on the multiple drugs for which her protocol calls so I think they will only be doing one. Dr. Wolff mentioned Acutane but that’s the one that really dries out the skin so that may not end up being the one.
After Dr. Wolff left, the Bonitas came back and Dad and I turned right around and went to the Target for sinus headache stuff for me (nothing happening now but just in case) and a Clifford video. We didn’t find one but I found a cheap Thomas video and one with several Nick Jr. characters doing bedtime stories including, but not limited to, Wonder Pets, Blue, and Dora. Perfect.
We got back to Juanita teaching CJ about swimming in chocolate pools (not a bad thing at all) and to say “AWESOME!” (could be a bad thing). She was feeling restless so we went for a walk!!! She was raring to go and didn’t have to asked twice. It’s the first walking she’d done since Wednesday and that wasn’t much. I guess it was the first real walking since Tuesday night.
The rest is actually nice and boring. The Bonitas left, Charlotte and I snuggled on the bed for a bit, I got into my jammies, and here I am typing the update. I can deal with boring for a few days.
There! Got it done in under 3 pages!
The Bonitas are uber-helpful as usual. When we got settled in the hospital room, Juanita stayed with Charlotte and Dad and I went to get dinner downstairs. It was wonderful because I got to have Chick-fil-a for the first time in 2 weeks or so. It was also bad because I haven’t had hardly any fast food in that amount of time so the fried food sure did a number on me! Still working that out (so to speak).
Sitting down with Dad was so strange. Mostly because I wasn’t sitting next to Charlotte and I wasn’t freaking out about anything. And boy, did I feel tired!
So this am she ate a little and we had a relatively quiet morning. She still seemed a little sullen but her fluids sure are "fluiding."
The ambulance folk showed up at about 1:30 to take CJ to the proton center this time Isreal came with Laura (who reminded me a huge amount of one of our fellow Romp n’ Roll franchise owners). This time we got there very early and waited for about an hour until our appointment time. Grandpa held her on his lap for most of that time. She sure loves her Grandpa!
After she went in (with the accompanying rendition of Frosty. I hope she doesn’t get sick of it but her little hand out for “STOP!” just tickles the staff to no end) the Bonitas and I went back to The House so I could check mail (stuff keeps coming in, thanks), get a few things, and eat. Juanita made me some amazingly good stew and we were treated to another big o’ hairy thunderstorm that dumped a large amount of rain on our area.
Radiation treatment #3 went fine and CJ was in the recovery room when we got back. The Bonitas (isn’t that a kind of sport fish?) had to go check on the dog and awnings on the RV so they left planning to meet back up at the hospital.
Not much else happened until the ambu-guys showed up to take us back. It was Laura and Isreal again (that guy keeps showing up! Gotta go clean my shotgun! If I had one, that is). One thing I’m going to say about the drivers, they have to have super senses of direction because the maze that is MDAnderson Cancer Center is mind boggling. I do pretty well with directions and I’ve been so turned around multiple times, if I had been alone, I would have ended up like Jack Nicholson in The Shining.
Charlotte was actually feeling much better and was chatting up a storm. Laura had never seen the real Charlotte and was amazed.
So after we got resettled in the hospital room, Dr. Wolff came by to do what he does and work out what he thought might be a good plan of action. The short-term plan is to keep watching her at least one more day, do the new routine of hang out here, ride the ambulance ( Isreal is off tomorrow so I don’t have to worry about him! ), and see how she improves. He was happy with the looseness of her legs but her neck is still stiff. She interacted with him pretty well and smiled for him. It definitely helps that he’s a friend of Dr. Kahn, “one of my favorite doctors!”
As far as the chemo goes, he is deferring to Dr. Mahajan (radiation oncologist) who feels uncomfortable having her on the multiple drugs for which her protocol calls so I think they will only be doing one. Dr. Wolff mentioned Acutane but that’s the one that really dries out the skin so that may not end up being the one.
After Dr. Wolff left, the Bonitas came back and Dad and I turned right around and went to the Target for sinus headache stuff for me (nothing happening now but just in case) and a Clifford video. We didn’t find one but I found a cheap Thomas video and one with several Nick Jr. characters doing bedtime stories including, but not limited to, Wonder Pets, Blue, and Dora. Perfect.
We got back to Juanita teaching CJ about swimming in chocolate pools (not a bad thing at all) and to say “AWESOME!” (could be a bad thing). She was feeling restless so we went for a walk!!! She was raring to go and didn’t have to asked twice. It’s the first walking she’d done since Wednesday and that wasn’t much. I guess it was the first real walking since Tuesday night.
The rest is actually nice and boring. The Bonitas left, Charlotte and I snuggled on the bed for a bit, I got into my jammies, and here I am typing the update. I can deal with boring for a few days.
There! Got it done in under 3 pages!
Monday, July 13, 2009
Interesting Day Yesterday
I never heard from the media folks at the Houston Astros so we decided to just go and buy tickets. They have a cool deal for the summer that children get in free. We drove down to Minute Maid Park and found a tremendous parking spot right across from the Left Field entrance. Cancer really, really sucks but some of the percs are very nice, like handicapped parking!
We got in an got settled in our very nice seats. The weather is extremely hot and humid and we were "angsting" about where we would sit so the sun wouldn't be shining right on Charlotte and where we could retreat from the heat if it got too overwhelming. We held up the line at the box office trying to get just the right seat. Turns out we didn't need to worry; the roof was closed and the weather inside was fine.
All morning long, CJ had been kind of lethargic and I was starting to get worried that maybe she was getting sick or something. The "or something" part was actually really worrying me. It's been a brutal couple of weeks within the Caringbridge community and several of the children whose stories I've been following have passed away. Whenever I hear of a child passing, I go back in the journals and read several of the posts leading up to the passing annpouncement to see what happened and how things progressed. Yesterday that practice kind of haunted me as Charlotte's energy level kept going down and I got more and more worried about what might be happening to make it happen.
At the Astros game, we went into the store to get her a hat or jersey (pink, of course) but she would have none of it. She just wanted to be held and bury her head in my shoulder.
She had no fever, she wasn't feeling sick, she wasn't in pain, and she was eating (certainly helped make a dent in a bag of popcorn and some ice cream). She even wanted to walk after a bit (bored I guess) and we walked about 3/4 of the way around the stadium before she petered out and made me carry her.
So I was at a loss to figure out what was wrong and the fear was threatening to take over.
We lasted until the 7th inning stretch and then headed home. Charlotte conked out on the way back to the house (the only other warning sign) and I took a nap too. When we got up we headed over to our hosts, the Beasley's, home for dinner. Charlotte was STILL lethargic and I was wondering if we were going to have to take her to the emergency room. The thing was, other than the low energy and the nap, nothing else stood out.
So my habit of checking out the lead-up posts on all those other Caringbridge sites was backfiring on me because I was starting to go through worst-case scenarios.
Then, all of a sudden, she seemed to brighten up remarkably and told me, "Daddy, I pooped!"
That was it. Rachel remembered her mother saying something about that kind of pattern before and we also realized that it had been multiple days since her last BM. It all made sense.
So it all comes back to poop. The theme of our lives.
After that, Charlotte was like a different kid. She was sitting on the couch, entertaining herself like usual, singing to Mickey, rading stories to herself, watching the occasional video...
We headed back to the other house (where their daughter lives) and tried to get to bed at a decent time because we had early Monday appointments. Of course CJ was now wired and we had to set her up with books and videos while we rested. Fortunately, she took my word for it that we needed to go to sleep so she let me clear things off the bed and pull up the covers.
This morning we headed out early and got the MD Anderson in plenty of time for our whirlwind day of waiting.
I keep trying to put my "day of fear" into some kind of perspective and I just can't right now. It was mostly irrational fear fed by looking at other kids' sites, most of whom had conditions not related to the PNET in Charlotte's head. I need to digest it a while longer. I also don't think I'm describing it adequately. I don't even think Rachel has a clear idea of how I was feeling. Guess she will now, sort of.
The best news of the day is that we called Ronald McDonald House and they have room for us!!! We'll be heading over tonight to get settled in. SO that means we need to contact the Hoston Ground Angels to see if they can give Rachel a ride to the airport tomorrow on very short notice.
I'm on it!
Update:
Welcome to our new home away from home. We have been admitted to the Ronald McDonald House and can be here for the next 45 days if needed. At only $25 a day, you can't beat the accommodations! It is fabulous with a play area, lots of space for cooking, we have our own room with 2 beds and a bathroom, and even the "house dog"...a labradoodle named Mogie.
We can receive mail while we are here. The address is:
1907 Holcombe Blvd
Room 27
Houston, TX 77030
The morning was pretty much spent with paperwork and an anethesia assessment and now we are just resting before our trip over to the proton center at 3 PM. Charlotte had to be NPO at 5 this morning because of the anesthesia they will use and, of course, she did not get up at 5 AM to eat so we are all trying not to eat in front of her. But mommy and daddy have to keep their strength up so we are sneaking bits of cracker and granola bar here and there. She is holding up pretty well. We will have to FEAST tonight.
I'm very glad that we have the housing settled before I have to leave tomorrow morning. I am not looking forward to leaving the 2 most important people in my life for almost 2 weeks but we do what we gotta do!
I think we're off to play and explore so we'll talk to everyone soon.
Rachel
Update:
What a long day. A good day. A productive day. But a L-O-N-G day.
As mentioned earlier, we have found our lodgings here at the Ronald McDonald House. It's such a great place for families in our situation. We are about a mile from the main MD Anderson campus and the shuttle can take us pretty much anywhere we need to go. It even goes to the grocery store once a day. They have full kitchen facilities for us to use and lots of community items like seasonings, eggs, condiments, etc. so that cooking is pretty easy and doesn't always have to be ramen noodles!
Plus, almost every night, a community group comes in to provide dinner and sometimes even additional activities. Southwest Airlines is bringing a group tomorrow and rumor has it that their events are not to be missed. Some of their volunteers are already here starting to roast the brisket for tomorrow night (can you tell we're in Texas?).
After we left RMH (as we will probably refer to it in future posts), we took the shuttle over to the proton center which is pretty much on the other side of the hospital area. It's about a 20-30 minute ride by shuttle. Charlotte was pretty quiet and mellow most of the day. She hadn't had anything to eat since last night and they'd only allowed her about 4 oz of juice after 10:30. Amazingly, she only told daddy one time that she was hungry. When he told her she couldn't eat until after she saw the doctor, she never asked again. What a trooper. I, on the other hand, was famished!! But didn't want to eat in front of my NPO child.
We got to the proton center and had very little wait. We immediately met a string of professionals including our Nurse Practitioner, the oncology fellow, and then Dr. Mahajan who is her radiation oncologist. We discussed the treatment plan, they went over all the possible side effects, and then we discussed the fact that she would be having whole brain and spine radiation after all. Roger and I were confused for a little while, mainly because Dr. Wolff and Dr. Khan had maintained that proton therapy was not necessary for whole head and spine radiation and that we were going to focus on the tumor area. Turns out that's not exactly the case and in fact, she stands to benefit more from whole head/spine radiation due to the location of her tumor and should receive less effects from the radiation on areas such as her thyroid gland and other vital organs by receiving the proton therapy.
After we met with the radiation oncologist, the anesthesiology crew came in. Dr. Porche is her primary anesthesiologist and she is such a sweetheart. She just swooped Charlotte up in her arms and began to sing to her and ooh and ahh over her. So nice! The nurse anesthetist (sp?) also informed us that while she was receiving proton therapy, they would change her dressing twice a week, do all the line flushes, and basically take care of anything else that needs to be done with her lines. Hooray.
Finally it was off to the simulation. Charlotte got to actually "administer" her own juice by starting the pump and pushing the syringe to flush the line. As tired as she was, she was out in no time. Then we got to meet with the research nurse to go over permissions for them to study Charlotte's blood and DNA as well as participate in a longitudinal data study for basically the rest of Charlotte's life to help them study long-term outcomes of proton therapy. This means that data such as hormone levels, cognitive tests, etc. will all be collected at regular intervals on her. Anything that will help kids down the road, that's what I say!
We also met the Child Life Specialist who told us about some upcoming kid's events and offered some ways that their services could be helpful.
Did I miss anyone? There were a lot of people to meet. Soon enough, Charlotte's procedure was finished and we went to meet her in recovery. It took her FOREVER to wake up but she finally roused (with some assistance from us) and we shuttled her back to RMH with some dinner. Roger took Merrilee's car (she had left it for us at the proton center) back to their home in Jersey Village and collected all of our belongings and made his way back to RMH all in one piece.
We must make yet another (although I'm sure it will not be final) note of thanks to the Beazley family for their most gracious hosptiality and help with this process. they have gone above and beyond and we are grateful to them as well as to Mitch and Meredith Hayes for making the connection.
So we are basically "moved in" and settled. Clothes are unpacked and put in dresser drawers. We have a moderate supply of groceries and snacks that will last until the next grocery trip. I have given Roger many final instructions and reminders on her appointments, etc. (I tend to be the "manager" of all that information. Surprised?). I am leaving early tomorrow morning and only taking my big purse/tote bag with me. No clothes (they can stay here for my return trip), no diaper bag (whoopee), no stroller. Just me, myself and I.
See many of y'all back in Richmond. I've got a lot of work ahead of me and Charlotte and Roger have quite the adventure ahead of them.
Rachel
We got in an got settled in our very nice seats. The weather is extremely hot and humid and we were "angsting" about where we would sit so the sun wouldn't be shining right on Charlotte and where we could retreat from the heat if it got too overwhelming. We held up the line at the box office trying to get just the right seat. Turns out we didn't need to worry; the roof was closed and the weather inside was fine.
All morning long, CJ had been kind of lethargic and I was starting to get worried that maybe she was getting sick or something. The "or something" part was actually really worrying me. It's been a brutal couple of weeks within the Caringbridge community and several of the children whose stories I've been following have passed away. Whenever I hear of a child passing, I go back in the journals and read several of the posts leading up to the passing annpouncement to see what happened and how things progressed. Yesterday that practice kind of haunted me as Charlotte's energy level kept going down and I got more and more worried about what might be happening to make it happen.
At the Astros game, we went into the store to get her a hat or jersey (pink, of course) but she would have none of it. She just wanted to be held and bury her head in my shoulder.
She had no fever, she wasn't feeling sick, she wasn't in pain, and she was eating (certainly helped make a dent in a bag of popcorn and some ice cream). She even wanted to walk after a bit (bored I guess) and we walked about 3/4 of the way around the stadium before she petered out and made me carry her.
So I was at a loss to figure out what was wrong and the fear was threatening to take over.
We lasted until the 7th inning stretch and then headed home. Charlotte conked out on the way back to the house (the only other warning sign) and I took a nap too. When we got up we headed over to our hosts, the Beasley's, home for dinner. Charlotte was STILL lethargic and I was wondering if we were going to have to take her to the emergency room. The thing was, other than the low energy and the nap, nothing else stood out.
So my habit of checking out the lead-up posts on all those other Caringbridge sites was backfiring on me because I was starting to go through worst-case scenarios.
Then, all of a sudden, she seemed to brighten up remarkably and told me, "Daddy, I pooped!"
That was it. Rachel remembered her mother saying something about that kind of pattern before and we also realized that it had been multiple days since her last BM. It all made sense.
So it all comes back to poop. The theme of our lives.
After that, Charlotte was like a different kid. She was sitting on the couch, entertaining herself like usual, singing to Mickey, rading stories to herself, watching the occasional video...
We headed back to the other house (where their daughter lives) and tried to get to bed at a decent time because we had early Monday appointments. Of course CJ was now wired and we had to set her up with books and videos while we rested. Fortunately, she took my word for it that we needed to go to sleep so she let me clear things off the bed and pull up the covers.
This morning we headed out early and got the MD Anderson in plenty of time for our whirlwind day of waiting.
I keep trying to put my "day of fear" into some kind of perspective and I just can't right now. It was mostly irrational fear fed by looking at other kids' sites, most of whom had conditions not related to the PNET in Charlotte's head. I need to digest it a while longer. I also don't think I'm describing it adequately. I don't even think Rachel has a clear idea of how I was feeling. Guess she will now, sort of.
The best news of the day is that we called Ronald McDonald House and they have room for us!!! We'll be heading over tonight to get settled in. SO that means we need to contact the Hoston Ground Angels to see if they can give Rachel a ride to the airport tomorrow on very short notice.
I'm on it!
Update:
Welcome to our new home away from home. We have been admitted to the Ronald McDonald House and can be here for the next 45 days if needed. At only $25 a day, you can't beat the accommodations! It is fabulous with a play area, lots of space for cooking, we have our own room with 2 beds and a bathroom, and even the "house dog"...a labradoodle named Mogie.
We can receive mail while we are here. The address is:
1907 Holcombe Blvd
Room 27
Houston, TX 77030
The morning was pretty much spent with paperwork and an anethesia assessment and now we are just resting before our trip over to the proton center at 3 PM. Charlotte had to be NPO at 5 this morning because of the anesthesia they will use and, of course, she did not get up at 5 AM to eat so we are all trying not to eat in front of her. But mommy and daddy have to keep their strength up so we are sneaking bits of cracker and granola bar here and there. She is holding up pretty well. We will have to FEAST tonight.
I'm very glad that we have the housing settled before I have to leave tomorrow morning. I am not looking forward to leaving the 2 most important people in my life for almost 2 weeks but we do what we gotta do!
I think we're off to play and explore so we'll talk to everyone soon.
Rachel
Update:
What a long day. A good day. A productive day. But a L-O-N-G day.
As mentioned earlier, we have found our lodgings here at the Ronald McDonald House. It's such a great place for families in our situation. We are about a mile from the main MD Anderson campus and the shuttle can take us pretty much anywhere we need to go. It even goes to the grocery store once a day. They have full kitchen facilities for us to use and lots of community items like seasonings, eggs, condiments, etc. so that cooking is pretty easy and doesn't always have to be ramen noodles!
Plus, almost every night, a community group comes in to provide dinner and sometimes even additional activities. Southwest Airlines is bringing a group tomorrow and rumor has it that their events are not to be missed. Some of their volunteers are already here starting to roast the brisket for tomorrow night (can you tell we're in Texas?).
After we left RMH (as we will probably refer to it in future posts), we took the shuttle over to the proton center which is pretty much on the other side of the hospital area. It's about a 20-30 minute ride by shuttle. Charlotte was pretty quiet and mellow most of the day. She hadn't had anything to eat since last night and they'd only allowed her about 4 oz of juice after 10:30. Amazingly, she only told daddy one time that she was hungry. When he told her she couldn't eat until after she saw the doctor, she never asked again. What a trooper. I, on the other hand, was famished!! But didn't want to eat in front of my NPO child.
We got to the proton center and had very little wait. We immediately met a string of professionals including our Nurse Practitioner, the oncology fellow, and then Dr. Mahajan who is her radiation oncologist. We discussed the treatment plan, they went over all the possible side effects, and then we discussed the fact that she would be having whole brain and spine radiation after all. Roger and I were confused for a little while, mainly because Dr. Wolff and Dr. Khan had maintained that proton therapy was not necessary for whole head and spine radiation and that we were going to focus on the tumor area. Turns out that's not exactly the case and in fact, she stands to benefit more from whole head/spine radiation due to the location of her tumor and should receive less effects from the radiation on areas such as her thyroid gland and other vital organs by receiving the proton therapy.
After we met with the radiation oncologist, the anesthesiology crew came in. Dr. Porche is her primary anesthesiologist and she is such a sweetheart. She just swooped Charlotte up in her arms and began to sing to her and ooh and ahh over her. So nice! The nurse anesthetist (sp?) also informed us that while she was receiving proton therapy, they would change her dressing twice a week, do all the line flushes, and basically take care of anything else that needs to be done with her lines. Hooray.
Finally it was off to the simulation. Charlotte got to actually "administer" her own juice by starting the pump and pushing the syringe to flush the line. As tired as she was, she was out in no time. Then we got to meet with the research nurse to go over permissions for them to study Charlotte's blood and DNA as well as participate in a longitudinal data study for basically the rest of Charlotte's life to help them study long-term outcomes of proton therapy. This means that data such as hormone levels, cognitive tests, etc. will all be collected at regular intervals on her. Anything that will help kids down the road, that's what I say!
We also met the Child Life Specialist who told us about some upcoming kid's events and offered some ways that their services could be helpful.
Did I miss anyone? There were a lot of people to meet. Soon enough, Charlotte's procedure was finished and we went to meet her in recovery. It took her FOREVER to wake up but she finally roused (with some assistance from us) and we shuttled her back to RMH with some dinner. Roger took Merrilee's car (she had left it for us at the proton center) back to their home in Jersey Village and collected all of our belongings and made his way back to RMH all in one piece.
We must make yet another (although I'm sure it will not be final) note of thanks to the Beazley family for their most gracious hosptiality and help with this process. they have gone above and beyond and we are grateful to them as well as to Mitch and Meredith Hayes for making the connection.
So we are basically "moved in" and settled. Clothes are unpacked and put in dresser drawers. We have a moderate supply of groceries and snacks that will last until the next grocery trip. I have given Roger many final instructions and reminders on her appointments, etc. (I tend to be the "manager" of all that information. Surprised?). I am leaving early tomorrow morning and only taking my big purse/tote bag with me. No clothes (they can stay here for my return trip), no diaper bag (whoopee), no stroller. Just me, myself and I.
See many of y'all back in Richmond. I've got a lot of work ahead of me and Charlotte and Roger have quite the adventure ahead of them.
Rachel
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
Subscribe to:
Posts (Atom)