I promise that when we publish the book, we’ll fix all the atrocious spellings and grammatical errors!
Yesterday, the New Mexico trio headed back to Farmington/La Plata but not before showering Charlotte with gifts, taxiing us around all over the place, paying for lunch, and revealing that they (Uncle Notsohairy actually) had caps made in purple and pink with Charlotte’s name stitched into them. Pink stitching on the purple hats and visa versa.
Aunt B has agreed to shave her head for a cancer walk they are doing in September but only if I can get Charlotte there for the event. Hmmm…MAN! I really would love to see that. We’ll see.
After we made our goodbyes and they left for the airport, Charlotte and I spent most of the late afternoon in the room with me catching a cat nap here and there and CJ watching videos and waking me up every time one section ended to tell me plot highlights. She got her legs back after a while and we headed back downstairs. Southwest Airlines was serving dinner so it was smelling pretty good down there.
We also met up with a new family with 3 boys and a 9-year old girl (the patient) named Mikayla. Mikayla has become a new bff (dear God, I didn’t really say that, did I?). She and Charlotte seemed to really hit it off. Charlotte doesn’t seem to mind the attention Mikayla gives her and Mikayla really seems to like looking out for CJ. It gave me the chance to get dinner, play a little piano, read a little, stuff like that. The rest of the family seems great too. Dad and the three boys all have their heads shaved in support of Mikayla.
We had a very early (7:30) appointment with the eye doctor Wednesday (yesterday) morning so I had to get CJ into bed as early as possible. It was still well after 10pm.
I slept like doggie doo doo. Not getting enough sleep this week. I’ll try to do better.
So I got her up early and decided to try to dress her in the Dora and Diego scrubs Grandma Bonita made for her. I understand she wouldn’t wear them earlier so I didn’t have much hope. I accidentally happened on the way to get her to wear almost anything: threaten to leave her in her nightgown to go see the Drs. She’s developing such a sense of “style” and fashion that going out in jammies is a complete fauxpas! She left wearing the custom scrubs, surgical cap and all!
I hadn’t actually walked the two blocks to the main hospital since I’ve been back so I forgot that it only take 5-10 minutes to get there which means we arrived at around 7:15 for our 7:30am appointment. Then we waited. The hours on the door said the office didn’t even open until 7:30. Why book a 7:30 appointment when it’s obviously never going to happen at that time? The staff was a little late opening the office so I was a little growly when I went in. Not too bad, though.
We eventually went into the office around 8:05. The “techs” got so much more out of Charlotte this time than the Dr. got last time. We even got dilating drop into her eyes with a minimum of drama. Then when the Dr. actually did come in, my theory was proven correct. CJ remembered her and really wanted nothing to do with her. We ended up having to hold her and force her eyes open so they could look at the optic nerves. That was pretty traumatic. In hindsight, I can’t believe I even allowed it let alone participated in it. Remember, this is the same Dr that asked all the bad questions last time. This time she kept saying things like, “Just do this one thing and we’ll be done.” And then she would do more, making Charlotte realize the next time she heard that phrase that the Dr. was full of crap. I finally had to be a bit rude and tell her in no uncertain terms not to do that anymore. I tell you, she knows a ton about the eye but not much about kids. I told Nurse Rhe about it and she said she’d check into it. The end result is that they left eye still has some very slight swelling around the optic nerve which may just be leftover from everything so no one is too worried about it right now.
There just has to be a better way to do that sort of stuff.
Next on the printed schedule was supposed to be proton therapy at 12:30 with a follow-up visit back to Dr. Wolff at 1:30. Hopefully you can see this wasn’t going to happen. Treatments are about an hour long with 30-45 minute recovery times.
With that in mind, I went into the Children’s Center hoping to get squeezed in before we had to leave for proton. That place is always such a breath of fresh air. Both Rhe and Nurse Carmen came out to talk to her and oogle her scrubs. Charlotte LOVES Nurse Carmen and I guess they have a little ritual conversation/routine they do getting back to the room. Unfortunately, my showing up early put Nurse Carmen at a disadvantage since before, CJ always got there after proton and they could talk about food. Carmen was quick on the uptake when I coughed out “NPO!” and she steered the small talk elsewhere.
Then Dr. Wolff came in and did a masterful job of filtering the crap (most of it mine). When he asked me what was new, what had happened lately, I started grousing about the eye doc and he quickly redirected my energy onto more constructive paths. “Ok, BESIDES the eye doctor, what has happened.” “OH! You actually want me to talk about Charlotte?!? I rarely have felt better about being scolded for being stupid. Especially as an adult. The decision was to start topotecan on Friday
I messed up the schedule yet another way because the blood draws/counts he would have used to decide what to do with the next type of chemo drugs would have been drawn by the proton center and since I hadn’t been there yet, there were no draws to study. Not to worry, we got blood drawn right there and then and we headed off to the proton center. We timed it just right and the MDAnderson shuttle was just starting to pull away when one of the volunteers (God bless ‘em!) ran out and placed her body down in front of the tires to stop the bus.
(OK, so I might be exaggerating just a little.)
The bus driver remembered CJ and I learned his name was Walter Johnson. He mentioned he shared a name with the old-time baseball player. Being more ignorant about baseball than I care to admit, I had no idea who he meant so, in perfect form, I googled him and when the bio came up, I felt even worse about my ignorance. Walter Johnson was arguably the best major league pitcher in history! 115 shutouts! Over 3,000 strikeouts!! Over 400 wins!!! Good name, I told Walter Johnson the shuttle bus driver.
We got to the proton center perfectly on time. I just walked right in, they got vitals real quick, and into the gantry we went. She was really tired already so no Frosty this time.
The other not so good thing was that when she was done recovering, I called The House to make sure the shuttle would stop to pick us up. They said the next shuttle leave at 2:30 and would be there to get us. Just to make sure I called about 2:30 to confirm and they said, yes, you’re on the list. We’ll about 3:30 I called and they had somehow forgotten me. Grumblegrumblegrumble. So they called a cab for me and I took a $4.00 ride. Not too bad. I got over my ruffled feathers pretty quickly.
The rest of the night was pretty standard…CJ read books in the room while I dozed here and there. We went back down and Mikayla was there. FREEDOM! Even if to eat in a smidgen of peace. CJ got her appetite back and devoured a bunch of animal crackers, two cups of Mandarin oranges (one of which had her accutane in it), and three slices of turkey coldcuts.
Then up for Madagascar 2, books, and bed.
So that’s where we are. Tomorrow’s proton appointment is blissfully scheduled for 10:30am!
Take care,
Rog
Update:
Well, I'm not exactly sure how things are out in TX but I know that I have had a GREAT day.
It started early with an 8 AM appointment with Dr. Bitsko but we had to do some flexing with the schedule so that I could see him before I left again for Texas. I'd been having kind of a rough time emotionally since some of Charlotte's recent medical developments and I think coming home (and being by myself to ruminate over it) just makes things worse. Anyway, we had a good talk and he helped me get some perspective on things. Always very helpful and encouraging.
From there, I went to Divas for my SPA DAY! Thanks to the many people who helped make this possible, including Jackie, Meredith, Walter, Sherry, my parents, Becky, Tracy...who did I forget? Anyway, they got me a full day experience at Divas and I had a manicure, pedicure, facial, hydrotherapy treatment, lunch, and a one-hour massage. It was so relaxing and very nice to do something that was just for me.
I did actually go in to work for a bit (Thanks Annette for covering a few extra hours) and then met up with some old work friends for drinks and dinner.
So overall, I really couldn't ask for a better day. I really have work to get done that must get accomplished before I leave again on Saturday but I guess I will get there eventually. Big day at work tomorrow and then I'm on the 24 hour countdown again. Time is flying by and I guess that's a good thing.
So Roger is calling me so I must go talk to my family.
Rachel
Showing posts with label proton therapy. Show all posts
Showing posts with label proton therapy. Show all posts
Thursday, August 13, 2009
Friday, August 7, 2009
Another Good Day
More FUN facts about proton radiation therapy:
1. Protons are injected via a vacuum tube into a linear accelerator and in a few microseconds, the energy equals 7 million volts!!
2. The energy increases to 70-250 million volts which allows the beam to enter the body at various points.
3. Protons move through a series of magnets that shape, focus and direct the beam.
4. At maximum energy, a proton beam travels 125,000 miles per second (or 2/3 the speed of light)!!!
5. From the Hydrogen canister to the patient, a proton travels 313,000 miles!!!
And we thought the trip from Virginia to Houston was far!
***************************
Another good day. Today started out early because of our check-in at the clinic with Dr. Wolff. He is very happy with her progress so we are down to 1x/week checking in with the radiation oncologist and 1x/week checking in with the the oncologist. Plus the daily proton treatments. We will discuss further chemo next week and he is going to begin working on her plan for when we leave and go back to MCV.
The hair just keeps falling out but in typical Charlotte fashion, it doesn't seem to bother her. She was really hungry when we got out of radiation today so we stopped at MDA for a snack (cheetos and apple juice) and then headed back to RMH. I cleaned our room and did some laundry and Charlotte was actually pretty social today.
My friend Kim sent her a farm animal lacing set and she is LOVING it. A good replacement for those shoelaces. Her OT practice is going very well and today she spent a LOT of time lacing and unlacing the horse and the pig. The other kids were really interested in what she was doing too and we had a bunch of the RMH kids working on their fine motor skills. I'll just hang out a shingle and open a clinic here.
The evening was fun because the University of Miami Alumni
Association (Houston Chapter) hosted an ice cream social for the kids here at RMH. Got to meet some fellow 'Canes (none of whom went to school during mine or Roger's tenure). Lots of recent grads. Charlotte ate a LOT of ice cream (chocolate in a pink cone with sprinkles!! and she socialized with everyone.
By the way, she keeps telling everyone "I have two boyfriends...Larson and Wyatt." Depending on the day, she changes who her "favorite" is. Of course, if anyone asks if she has brothers or sisters, she tells them that her two "brothers" are also Larson and Wyatt so I guess she's a little confused. I get lots of weird looks when she says she has 2 brothers but I say she's an only child. She also says she has "two girlfriends" but doesn't say their names.
She also has developed this adorable habit of getting my attention by saying "Tweet Tweet mommy!" That means she wants to tell me something. She's my baby bird!!
So we are settling in for the evening and getting ready for the family to come tomorrow. Hooray! I know she will be very happy to see Daddy and we are looking forward to the visit from Aunt B, Aunt Lynn, and Uncle Terry too.
OH! I learned a very good thing tonight: proton therapy patients get to stay at RMH for up to 60 days before having to vacate so we won't have to worry about appealing for more time or finding another place to stay. I also talked to one of the other moms whose kid is getting proton radiation and she said that their last treatment was supposed to be on a Monday but they are "concentrating" his last 5 treatments so that they can finish on a Friday. I'm going to have to ask about that as her current schedule has her finishing on a Monday. It would be really nice to finish on a Friday and spend the weekend packing up for home...
Lots to do and must rest too (hey, that rhymes).
Happy weekend, y'all!
Rachel
1. Protons are injected via a vacuum tube into a linear accelerator and in a few microseconds, the energy equals 7 million volts!!
2. The energy increases to 70-250 million volts which allows the beam to enter the body at various points.
3. Protons move through a series of magnets that shape, focus and direct the beam.
4. At maximum energy, a proton beam travels 125,000 miles per second (or 2/3 the speed of light)!!!
5. From the Hydrogen canister to the patient, a proton travels 313,000 miles!!!
And we thought the trip from Virginia to Houston was far!
***************************
Another good day. Today started out early because of our check-in at the clinic with Dr. Wolff. He is very happy with her progress so we are down to 1x/week checking in with the radiation oncologist and 1x/week checking in with the the oncologist. Plus the daily proton treatments. We will discuss further chemo next week and he is going to begin working on her plan for when we leave and go back to MCV.
The hair just keeps falling out but in typical Charlotte fashion, it doesn't seem to bother her. She was really hungry when we got out of radiation today so we stopped at MDA for a snack (cheetos and apple juice) and then headed back to RMH. I cleaned our room and did some laundry and Charlotte was actually pretty social today.
My friend Kim sent her a farm animal lacing set and she is LOVING it. A good replacement for those shoelaces. Her OT practice is going very well and today she spent a LOT of time lacing and unlacing the horse and the pig. The other kids were really interested in what she was doing too and we had a bunch of the RMH kids working on their fine motor skills. I'll just hang out a shingle and open a clinic here.
The evening was fun because the University of Miami Alumni
Association (Houston Chapter) hosted an ice cream social for the kids here at RMH. Got to meet some fellow 'Canes (none of whom went to school during mine or Roger's tenure). Lots of recent grads. Charlotte ate a LOT of ice cream (chocolate in a pink cone with sprinkles!! and she socialized with everyone.
By the way, she keeps telling everyone "I have two boyfriends...Larson and Wyatt." Depending on the day, she changes who her "favorite" is. Of course, if anyone asks if she has brothers or sisters, she tells them that her two "brothers" are also Larson and Wyatt so I guess she's a little confused. I get lots of weird looks when she says she has 2 brothers but I say she's an only child. She also says she has "two girlfriends" but doesn't say their names.
She also has developed this adorable habit of getting my attention by saying "Tweet Tweet mommy!" That means she wants to tell me something. She's my baby bird!!
So we are settling in for the evening and getting ready for the family to come tomorrow. Hooray! I know she will be very happy to see Daddy and we are looking forward to the visit from Aunt B, Aunt Lynn, and Uncle Terry too.
OH! I learned a very good thing tonight: proton therapy patients get to stay at RMH for up to 60 days before having to vacate so we won't have to worry about appealing for more time or finding another place to stay. I also talked to one of the other moms whose kid is getting proton radiation and she said that their last treatment was supposed to be on a Monday but they are "concentrating" his last 5 treatments so that they can finish on a Friday. I'm going to have to ask about that as her current schedule has her finishing on a Monday. It would be really nice to finish on a Friday and spend the weekend packing up for home...
Lots to do and must rest too (hey, that rhymes).
Happy weekend, y'all!
Rachel
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
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.
Thursday, July 23, 2009
Charlotte Admitted to the Hospital
I know everyone is probably chomping at the bit for some kind of update. I can't do it justice so Roger will need to give the full rundown but suffice it to say it's been a rough 24-48 hours or so for Roger and Charlotte.
Here's the brief update:
First day of radiation ran late and really long.
She got nauseous and started vomiting about 1 AM.
Had second day of radiation BUT also saw oncology doc and there were concerns that she might have some kind of bug. She got admitted to the hospital so they could give her fluids and monitor her progress. Hopefully won't be admitted for long.
That's about as much as I know.
Also (fortunately) Bob and Juanita are now in Houston so Roger has some backup support.
I will let him supply further details. Last time I talked to him, he was really tired. I'm hoping he got some rest.
As for me, I'm hanging in there. Working a lot and can't believe it's almost my turn to go to TX. Had a really good meeting with Dr. Matt yesterday (always helps) and work has been going well. I've had some great angels bringing me meals, flowers, and other bits of sunshine to brighten my days.
Gotta go get ready for another busy day.
Rachel
Update:
Guess what? This one’s tipping 5 pages in Word! Rachel's post was pretty much IT in a nutshell so if you only want shells, that's all you need. Go get some coffee. If you want nuts keep reading. And go get a whole pot!
MAN! I hate it when I'm right (and I'm right so rarely I should appreciate it).
The last couple of days have been brutal. I haven't felt awake enough, or had enough free time while awake to post on CB but hopefully my little blurbs on Facebook helped some of you get at least a partial fix. Not sure I can make it long tonight. (Actually I didn’t. I had to put down the laptop and sleep. It’s now 4:45am)
So we're in the hospital. I mean the actual hospital, admitted for observation because Charlotte isn't eating and threw up four times today. including once right in front of Dr. Wolff.
But I'm getting ahead of myself.
Yesterday (Tuesday) started her proton therapy treatments and Charlotte had trouble from the start. We had to wake up at the buttcrack of dawn to try and get her to eat something before she went NPO at 5:30am. No-go. She wasn’t interested and I don’t blame her. My problem at the time (and there were many on Monday) was that she wasn’t going to get to eat all day and there is always food floating around The House. I wanted to minimize CJ’s suffering by at least getting her to eat something. As I Said, no-go.
So I let her sleep and she didn’t eat all day. It really wasn’t an issue because she hasn’t been eating much and she didn’t ask for anything. Her appointment at the proton therapy clinic was (supposedly) at 2:30pm. On MYMDAnderson.com, it actually said 2pm and, as I have since found out, the clinic had 3:30. But I didn’t know that so let’s not taint the post too early.
She slept in again and I didn’t disturb her to make the time between awake and food as small as possible. When we finally got up, we did the usual, watch a video, go downstairs, play with shoestrings, etc.
I mentioned her “stiffening up” before and it has been slowly but steadily getting worse. I was going to mention it to the Drs. at Wednesday’s appointment. She’s getting to the point that she doesn’t like to sit up. She’s also very lethargic which isn’t a good sign.
There are shuttles that go around the medical center from The House and the only one that would get us to the proton center on time for the 2:30 appt. leaves at 12:45 so we had to take that one and get there early. Not a problem, I always have stuff for her to do. She hasn’t really been the mood to do anything except be held or play with shoestrings anyway.
So we got there very early and checked in. Who knows? Maybe they could get her in early. (Writing that now I think to myself, “you silly, naïve little man.”) At least they got her in to get the vitals. Then we went out the lobby and waited. And waited. And waited…(Remember the John Houston version of the story of Noah?)
Finally, at about 3:30, I asked someone to go check and they came back and told me they were backed up (REALLY?!?) and Charlotte is up next. Well in proton radiation-speak, that could mean a long time. Most of these treatments are at least an hour long, the place has a steady flow of patients, and there are three “gantries.” The hours stack up. Which is why we were sitting there at 4pm waiting for what was originally supposed to be a 2:30pm appointment. Charlotte never complained or told me she was hungry the whole time. She was not feeling well I could tell and I just bundled her up and held her on my lap while she slept and I stewed. It was a very hard time sitting there letting my thoughts spiral around like they will do when I get riled. It also let in the “what if” demons and a couple times I just about lost it right there in the lobby. What really bugged me was that no one seemed concerned enough about us to at least keep us informed.
And then, with a lobby scattered with patients, many of whom are almost assuredly NPO (couldn’t eat), one of the doctors actually comes out and starts offering people chocolate! WHAT?!? I’m sure it was a gesture made with the best of intentions but incredibly unenlightened.
FINALLY after 4:30 (Charlotte was going on 20 hours since she ate last), they took her in and hardly anyone apologized for the delay and the sorries I got were superficial and insincere. I was livid by the time I carried her in to the Gantry that I had a hard time even talking to anyone. I wanted to break stuff, call people names, and write nasty emails. They know from before that CJ love Frosty so they had the lyrics already printed out and waiting and even that didn’t help. Charlotte wasn’t feeling great anyway so we didn’t sing. I really wanted to appreciate the scope of what was about to happen to her but I just took a couple pictures and left. Man! I was mad.
Now that she was in, I could eat something and when I went to get a snack, insult was added to injury. In retrospect, I realize this is a very silly thing to get upset over and a waste of energy but here’s where my head was at the time: In a rare attempt to eat healthy, I was going to get something other than the honey bun I got last time and realized the only thing remotely healthy was a little bag of peanuts and I just didn’t want that. I noticed anything of any “heft” was $1.25 so I stuck my $1 in and pulled out another dollar to chase but the machine wouldn’t take more than one dollar at a time. I didn’t have a quarter. Apparently neither did anyone else around me. It didn’t take $5s. There was no change machine. Internally, I blew up. My thoughts went from dark to biggest, meanest, hurricane storm cloud black. Had anyone spoken to me, or worse, asked me how I was, I think I would have just screamed in their face uncontrollably. I mean, these guys are supposed to be the absolute best IN THE WORLD at what they do and they have taken pains to make the environment as calm and “healing” as possible but they couldn’t think of a little detail like a freaking change machine or machines that take more than a dollar?!?
THEN! Noone called me back to the recovery room once she was done so it was almost two hours later (reminded of the time by my lovely wife) before I popped my head in to ask what was up. She had already woken up in the back and was getting her wits back. Talk about “when it rains it pours!” Things kept piling up so much I was beginning to think I had been set up.
Breathe. In-out-in-out
OK. Now you know how my annual freakout works. As I’ve said in a previous post, it’s turned into a monthly occurrence. I’m actually keeping a close eye on myself to make sure I’m not seriously losing it. That in itself is probably a warning sign, eh. Need to ask Matt about that. I’m doing “guitar therapy” on myself, staying very focused on CJ (once she was out of my control was when I melted down so I will need there distraction of working at Romp n’ Roll all the time) and trying to stay connected to everyone. Not doing regular CB updates takes its toll too. I’m telling you, it’s therapy.
Moving on, I did write that nasty email to MDAnderson and actually got results. They actually have a patient advocate and she filed a complaint in our name which is fine especially if they refine their policies.
OK, I said moving on. Charlotte went through her first therapy with no hitches and when I got back to her, she ate a fruit cup. The process had taken so long, we missed the last shuttle back to The House so they called us a cab. It’s not far and only cost $5 or so. I’m not sure but the woman (and her little boy) who rode back with us paid the fare and wouldn’t take any money from me. “Next time,” she said.
When we got back, they were playing BINGO and giving out some really amazing donated prizes. Charlotte wasn’t interested of course and just wanted to go into the playroom. That didn’t last long and it was off to bed. Good because we had an early appointment in the morning at the main hospital. I was feeling pretty wrung out so I just closed everything up and was asleep by 10.
Now there are few sounds in the world that strike fear into the heart of a parent than the tell-tale gurgling of a child about to throw up; especially in the middle of the night. I heard those sounds at around 1am. It yanked me from my sleep but I wasn’t fast enough with the bucket it went on the bed. I held her up, let her finish, and then got her cleaned up and gave her a zofran. I also stripped the bed and started a late night load of laundry (Man, is THAT a nice perc of The House.)
She threw up again about 4:45 and once more at around 6 but there was no fever and I figured it was just a little side effect of the proton therapy. I think in the end might have been part right. After the last episode, we just got up and got ready.
We walked to the main hospital because for some reason, CJ refused to get out of her stroller to get into the bus. No biggie, I need the exercise. When we got there, what I thought was a regular Dr.s visit ended up being an opthomology assessment. It was a bust because by now, CJ has become the most anti-social, uncooperative patient ever. It didn’t help that the eye doc kept shaking toys in her face and asking her 5 questions in a row without waiting for an answer and she asked “bad” questions at that. Rachel would have had a field day with her. Finally, I had had enough of it and ended the pointless berating telling her we would have to reschedule. My observation: a drawer full of toys doesn’t make you good with kids.
Can you tell I’m becoming disillusioned with MD Anderson at this point?
Next I went next door full of my daddy self determined to get some answers and see some people who, for some reason, weren’t communicating with us after we made it abundantly clear multiple times that we needed that. I checked in, told the receptionist that I really needed to find out what was going on with the chemo schedule and what we needed to do next. She got us squeezed in to see one of the nurses who took blood from CJ and then they put us in a room to wait for Dr. Wolff whom I had already seen running around looking very busy. I wasn’t feeling optimistic.
Then Dr. Wolff went and spoiled my mood. He single handedly renewed my faith in our purpose by coming in relatively soon, bringing his crew including Nurse Reh, who is his version of Dr. Tye’s Joanne, and did what I like second best about him (the best being that he’s a darn good oncologist), he sifted through the crap around the story, compiled information in his brain out loud right in front of us, and in a very short time, convinced me that CJ was actually dehydrated, had a bug that was probably easily treated, decided to admit her for observation and noticed the stiffness without my help. He actually said it was a classic sign of meningitis or a related condition although he said if it were really full blown meningitis, she would be a lot sicker.
He also asked me questions about what I think! Imagine that! I told him the impression I had gotten from my discussion from Dr. Vats about the tumor growing and the cancer cells in the spine. I think what I said jibed with his discussions with Dr. Vats so he finally told me what he thinks. He doesn’t think the tumor has grown but he needs the previous scan to tell for sure. Dr. Kahn was supposed to have sent it but no one can find it. Rachel is going to try to get a copy on disc to bring with her on Saturday.
(And now for something completely different: my belly makes a great laptop table!)
OK, I’m back. Dr. Wolff also suspects the cells in the spine have been there longer than everyone thinks. Another clue that it probably isn’t growing. He also said something interesting. He had mentioned how busy they were and the lack of rooms and I said I was sorry for throwing a monkey wrench into his day.
“Nonsence!” he said. "She’s a sick child, I love to treat sick children. The sicker they are the better.” I don’t think it came out quite right but I know what he meant. He’s up for it.
He didn’t want to interrupt the proton treatments because if it was actually something caused by the tumor, he didn’t want to get in the way of that. So Nurse Reh arranged an ambulance ride for us! Charlotte got to ride on a gurney through the halls and then in an ambulance to the proton center. First time I’ve ever been in an ambulance too. No lights or siren though. Oh well, I’m actually thankful we didn’t need them.
Before we left however, they hooked up a bag o’ fluids to her and she got rehydrated. Talk about a difference! She perked up and became quite chatty. By the way, she can see fine. She can see tiny pictures up close and identified pictures out in the hall from inside the room.
Day two at the proton center was like Charlotte after she poops (I just couldn’t have a post with no poop references!), completely different. We actually got there a bit after we were supposed to be there but right on time for the appointment and they rolled her right in. I carried her in to the Gantry and this time she was into the singing of Frosty (me too). She even did the “STOP!” with her hand when we got to that part. Then the happy juice kicked in and the last I heard was, ”That’s my favorite {zonk!}
In anticipation of the upcoming slumber party, I took the MDAnderson shuttle back to the main hospital intending to walk over to The House to get provisions from the room. I called my dad to see where they were in terms of getting into town and they said they were just getting ready to park at the main hospital! That was handy. So we met up, drove over to The House and I got stuff. We drove back to the proton center just in time to go see Charlotte in the recovery room. When she woke up and saw Grandpa KATIE BAR THE DOOR! I hadn’t seen that much energy out of that girl in a week. She sure loves her men. Grandma Juanita Bonita was all over her too “gettin’ lots o’ sugar.”
We got another ambulance ride back to the hospital and got settled in to our private room with shower. By the time we got here, she had closed back down and I don’t think she’s very happy to be here. Nice facilities, though. That’s another post.
Last night she had some juice and this morning she ate 4 crackers, a large pretzel, and most of a bag of 100 calorie pack Girl Scout cookies so at least something is going in.
So here we are at 8:15am, she went back to sleep pretty easily after some Blue’s Clues. Can’t wait to show her the playroom here. Pretty boss dude! Think she may need a diaper change.
Update:
A relatively short update:
The end
Here's the brief update:
First day of radiation ran late and really long.
She got nauseous and started vomiting about 1 AM.
Had second day of radiation BUT also saw oncology doc and there were concerns that she might have some kind of bug. She got admitted to the hospital so they could give her fluids and monitor her progress. Hopefully won't be admitted for long.
That's about as much as I know.
Also (fortunately) Bob and Juanita are now in Houston so Roger has some backup support.
I will let him supply further details. Last time I talked to him, he was really tired. I'm hoping he got some rest.
As for me, I'm hanging in there. Working a lot and can't believe it's almost my turn to go to TX. Had a really good meeting with Dr. Matt yesterday (always helps) and work has been going well. I've had some great angels bringing me meals, flowers, and other bits of sunshine to brighten my days.
Gotta go get ready for another busy day.
Rachel
Update:
Guess what? This one’s tipping 5 pages in Word! Rachel's post was pretty much IT in a nutshell so if you only want shells, that's all you need. Go get some coffee. If you want nuts keep reading. And go get a whole pot!
MAN! I hate it when I'm right (and I'm right so rarely I should appreciate it).
The last couple of days have been brutal. I haven't felt awake enough, or had enough free time while awake to post on CB but hopefully my little blurbs on Facebook helped some of you get at least a partial fix. Not sure I can make it long tonight. (Actually I didn’t. I had to put down the laptop and sleep. It’s now 4:45am)
So we're in the hospital. I mean the actual hospital, admitted for observation because Charlotte isn't eating and threw up four times today. including once right in front of Dr. Wolff.
But I'm getting ahead of myself.
Yesterday (Tuesday) started her proton therapy treatments and Charlotte had trouble from the start. We had to wake up at the buttcrack of dawn to try and get her to eat something before she went NPO at 5:30am. No-go. She wasn’t interested and I don’t blame her. My problem at the time (and there were many on Monday) was that she wasn’t going to get to eat all day and there is always food floating around The House. I wanted to minimize CJ’s suffering by at least getting her to eat something. As I Said, no-go.
So I let her sleep and she didn’t eat all day. It really wasn’t an issue because she hasn’t been eating much and she didn’t ask for anything. Her appointment at the proton therapy clinic was (supposedly) at 2:30pm. On MYMDAnderson.com, it actually said 2pm and, as I have since found out, the clinic had 3:30. But I didn’t know that so let’s not taint the post too early.
She slept in again and I didn’t disturb her to make the time between awake and food as small as possible. When we finally got up, we did the usual, watch a video, go downstairs, play with shoestrings, etc.
I mentioned her “stiffening up” before and it has been slowly but steadily getting worse. I was going to mention it to the Drs. at Wednesday’s appointment. She’s getting to the point that she doesn’t like to sit up. She’s also very lethargic which isn’t a good sign.
There are shuttles that go around the medical center from The House and the only one that would get us to the proton center on time for the 2:30 appt. leaves at 12:45 so we had to take that one and get there early. Not a problem, I always have stuff for her to do. She hasn’t really been the mood to do anything except be held or play with shoestrings anyway.
So we got there very early and checked in. Who knows? Maybe they could get her in early. (Writing that now I think to myself, “you silly, naïve little man.”) At least they got her in to get the vitals. Then we went out the lobby and waited. And waited. And waited…(Remember the John Houston version of the story of Noah?)
Finally, at about 3:30, I asked someone to go check and they came back and told me they were backed up (REALLY?!?) and Charlotte is up next. Well in proton radiation-speak, that could mean a long time. Most of these treatments are at least an hour long, the place has a steady flow of patients, and there are three “gantries.” The hours stack up. Which is why we were sitting there at 4pm waiting for what was originally supposed to be a 2:30pm appointment. Charlotte never complained or told me she was hungry the whole time. She was not feeling well I could tell and I just bundled her up and held her on my lap while she slept and I stewed. It was a very hard time sitting there letting my thoughts spiral around like they will do when I get riled. It also let in the “what if” demons and a couple times I just about lost it right there in the lobby. What really bugged me was that no one seemed concerned enough about us to at least keep us informed.
And then, with a lobby scattered with patients, many of whom are almost assuredly NPO (couldn’t eat), one of the doctors actually comes out and starts offering people chocolate! WHAT?!? I’m sure it was a gesture made with the best of intentions but incredibly unenlightened.
FINALLY after 4:30 (Charlotte was going on 20 hours since she ate last), they took her in and hardly anyone apologized for the delay and the sorries I got were superficial and insincere. I was livid by the time I carried her in to the Gantry that I had a hard time even talking to anyone. I wanted to break stuff, call people names, and write nasty emails. They know from before that CJ love Frosty so they had the lyrics already printed out and waiting and even that didn’t help. Charlotte wasn’t feeling great anyway so we didn’t sing. I really wanted to appreciate the scope of what was about to happen to her but I just took a couple pictures and left. Man! I was mad.
Now that she was in, I could eat something and when I went to get a snack, insult was added to injury. In retrospect, I realize this is a very silly thing to get upset over and a waste of energy but here’s where my head was at the time: In a rare attempt to eat healthy, I was going to get something other than the honey bun I got last time and realized the only thing remotely healthy was a little bag of peanuts and I just didn’t want that. I noticed anything of any “heft” was $1.25 so I stuck my $1 in and pulled out another dollar to chase but the machine wouldn’t take more than one dollar at a time. I didn’t have a quarter. Apparently neither did anyone else around me. It didn’t take $5s. There was no change machine. Internally, I blew up. My thoughts went from dark to biggest, meanest, hurricane storm cloud black. Had anyone spoken to me, or worse, asked me how I was, I think I would have just screamed in their face uncontrollably. I mean, these guys are supposed to be the absolute best IN THE WORLD at what they do and they have taken pains to make the environment as calm and “healing” as possible but they couldn’t think of a little detail like a freaking change machine or machines that take more than a dollar?!?
THEN! Noone called me back to the recovery room once she was done so it was almost two hours later (reminded of the time by my lovely wife) before I popped my head in to ask what was up. She had already woken up in the back and was getting her wits back. Talk about “when it rains it pours!” Things kept piling up so much I was beginning to think I had been set up.
Breathe. In-out-in-out
OK. Now you know how my annual freakout works. As I’ve said in a previous post, it’s turned into a monthly occurrence. I’m actually keeping a close eye on myself to make sure I’m not seriously losing it. That in itself is probably a warning sign, eh. Need to ask Matt about that. I’m doing “guitar therapy” on myself, staying very focused on CJ (once she was out of my control was when I melted down so I will need there distraction of working at Romp n’ Roll all the time) and trying to stay connected to everyone. Not doing regular CB updates takes its toll too. I’m telling you, it’s therapy.
Moving on, I did write that nasty email to MDAnderson and actually got results. They actually have a patient advocate and she filed a complaint in our name which is fine especially if they refine their policies.
OK, I said moving on. Charlotte went through her first therapy with no hitches and when I got back to her, she ate a fruit cup. The process had taken so long, we missed the last shuttle back to The House so they called us a cab. It’s not far and only cost $5 or so. I’m not sure but the woman (and her little boy) who rode back with us paid the fare and wouldn’t take any money from me. “Next time,” she said.
When we got back, they were playing BINGO and giving out some really amazing donated prizes. Charlotte wasn’t interested of course and just wanted to go into the playroom. That didn’t last long and it was off to bed. Good because we had an early appointment in the morning at the main hospital. I was feeling pretty wrung out so I just closed everything up and was asleep by 10.
Now there are few sounds in the world that strike fear into the heart of a parent than the tell-tale gurgling of a child about to throw up; especially in the middle of the night. I heard those sounds at around 1am. It yanked me from my sleep but I wasn’t fast enough with the bucket it went on the bed. I held her up, let her finish, and then got her cleaned up and gave her a zofran. I also stripped the bed and started a late night load of laundry (Man, is THAT a nice perc of The House.)
She threw up again about 4:45 and once more at around 6 but there was no fever and I figured it was just a little side effect of the proton therapy. I think in the end might have been part right. After the last episode, we just got up and got ready.
We walked to the main hospital because for some reason, CJ refused to get out of her stroller to get into the bus. No biggie, I need the exercise. When we got there, what I thought was a regular Dr.s visit ended up being an opthomology assessment. It was a bust because by now, CJ has become the most anti-social, uncooperative patient ever. It didn’t help that the eye doc kept shaking toys in her face and asking her 5 questions in a row without waiting for an answer and she asked “bad” questions at that. Rachel would have had a field day with her. Finally, I had had enough of it and ended the pointless berating telling her we would have to reschedule. My observation: a drawer full of toys doesn’t make you good with kids.
Can you tell I’m becoming disillusioned with MD Anderson at this point?
Next I went next door full of my daddy self determined to get some answers and see some people who, for some reason, weren’t communicating with us after we made it abundantly clear multiple times that we needed that. I checked in, told the receptionist that I really needed to find out what was going on with the chemo schedule and what we needed to do next. She got us squeezed in to see one of the nurses who took blood from CJ and then they put us in a room to wait for Dr. Wolff whom I had already seen running around looking very busy. I wasn’t feeling optimistic.
Then Dr. Wolff went and spoiled my mood. He single handedly renewed my faith in our purpose by coming in relatively soon, bringing his crew including Nurse Reh, who is his version of Dr. Tye’s Joanne, and did what I like second best about him (the best being that he’s a darn good oncologist), he sifted through the crap around the story, compiled information in his brain out loud right in front of us, and in a very short time, convinced me that CJ was actually dehydrated, had a bug that was probably easily treated, decided to admit her for observation and noticed the stiffness without my help. He actually said it was a classic sign of meningitis or a related condition although he said if it were really full blown meningitis, she would be a lot sicker.
He also asked me questions about what I think! Imagine that! I told him the impression I had gotten from my discussion from Dr. Vats about the tumor growing and the cancer cells in the spine. I think what I said jibed with his discussions with Dr. Vats so he finally told me what he thinks. He doesn’t think the tumor has grown but he needs the previous scan to tell for sure. Dr. Kahn was supposed to have sent it but no one can find it. Rachel is going to try to get a copy on disc to bring with her on Saturday.
(And now for something completely different: my belly makes a great laptop table!)
OK, I’m back. Dr. Wolff also suspects the cells in the spine have been there longer than everyone thinks. Another clue that it probably isn’t growing. He also said something interesting. He had mentioned how busy they were and the lack of rooms and I said I was sorry for throwing a monkey wrench into his day.
“Nonsence!” he said. "She’s a sick child, I love to treat sick children. The sicker they are the better.” I don’t think it came out quite right but I know what he meant. He’s up for it.
He didn’t want to interrupt the proton treatments because if it was actually something caused by the tumor, he didn’t want to get in the way of that. So Nurse Reh arranged an ambulance ride for us! Charlotte got to ride on a gurney through the halls and then in an ambulance to the proton center. First time I’ve ever been in an ambulance too. No lights or siren though. Oh well, I’m actually thankful we didn’t need them.
Before we left however, they hooked up a bag o’ fluids to her and she got rehydrated. Talk about a difference! She perked up and became quite chatty. By the way, she can see fine. She can see tiny pictures up close and identified pictures out in the hall from inside the room.
Day two at the proton center was like Charlotte after she poops (I just couldn’t have a post with no poop references!), completely different. We actually got there a bit after we were supposed to be there but right on time for the appointment and they rolled her right in. I carried her in to the Gantry and this time she was into the singing of Frosty (me too). She even did the “STOP!” with her hand when we got to that part. Then the happy juice kicked in and the last I heard was, ”That’s my favorite {zonk!}
In anticipation of the upcoming slumber party, I took the MDAnderson shuttle back to the main hospital intending to walk over to The House to get provisions from the room. I called my dad to see where they were in terms of getting into town and they said they were just getting ready to park at the main hospital! That was handy. So we met up, drove over to The House and I got stuff. We drove back to the proton center just in time to go see Charlotte in the recovery room. When she woke up and saw Grandpa KATIE BAR THE DOOR! I hadn’t seen that much energy out of that girl in a week. She sure loves her men. Grandma Juanita Bonita was all over her too “gettin’ lots o’ sugar.”
We got another ambulance ride back to the hospital and got settled in to our private room with shower. By the time we got here, she had closed back down and I don’t think she’s very happy to be here. Nice facilities, though. That’s another post.
Last night she had some juice and this morning she ate 4 crackers, a large pretzel, and most of a bag of 100 calorie pack Girl Scout cookies so at least something is going in.
So here we are at 8:15am, she went back to sleep pretty easily after some Blue’s Clues. Can’t wait to show her the playroom here. Pretty boss dude! Think she may need a diaper change.
Update:
A relatively short update:
The end
Thursday, July 16, 2009
Some Bad, But Not Unexpected News
Hi all,
Huge post ahead.
Some bad, but not unexpected news: While Charlotte was in her neurocognitive assessment playing games with the two ladies (whose names I've already forgotten, sorry), I got to look at the latest MRI scans with Dr. Vats (Dr. Wolfe's colleague). We didn't have the post-3rd surgery scan for comparison but the tumor is definitely still there in bits and pieces and possibly still growing. I'm going on the assumption that it's growing.
Dr. Vats also said that there was evidence that it has spread into the upper spine (again, not altogether unexpected) although the computer he used to show me the scans didn't have enough resolution to pick up what he saw on his own computer so I didn’t actually see it. I’ll take his word for it.
Now, before anyone totally freaks out, it's certainly not good news by any stretch of the imagination but the proton radiation protocol has already accounted for the possibility and now we know that it was necessary to plan for head and spine after all. That starts next Tuesday.
Dr. Vats was still very positive and confident that we’re headed down the right path. He did say that he would bring Charlotte’s case before the “tumor board” on Monday to elicit opinions and also that he would explore the possibility of injecting chemo drugs directly into her spine via an LP once every two weeks, adding to Dr. Tye’s recommendation of “throwing the book at it.”
On a good note, CJ wowed them in the assessment with her vocabulary. They’ll get back to us with the official results of the testing as soon as they tally up everything. Dr. Vats was also happy with the recovery of CJ’s left side.
I’ve had several messages from people worrying about how I’m doing emotionally and all that. First off, thanks for the concern. It does mean a lot to me to have so many folks concerned about us.
I’m hanging in there. I’m nowhere close to thriving and I have my off moments but I feel like I’m dealing pretty well. I’ve been thinking very deep and hard about my/our situation and I feel about as focused as I’ve ever felt in my entire life. Crisis sure brings perspective down to a pinpoint, doesn’t it? Nothing else matters besides my daughter’s fight against the cancer. If I have any concerns for myself, it’s how I will deal with things after everything plays out (however it plays out). Different scenarios (best and worst) run through my head all the time but so far they haven’t distracted me from the here and now. I guess I’ll have to figure that out when I get there.
I can’t really speak for Rachel but I think she’s doing a little better. Today’s news didn’t help but she’s using her resources at home, MCV (mostly Dr. Matt), and within the circle of friends & family, and finding more solid footing. Romp n’ Roll is keeping her occupied (my turn when we switch) and Meredith orchestrated a day at Diva’s for her so that will help too! Anyone wanting to donate to that cause can send checks to me.
We will need support in Houston as the proton therapy and chemo kicks in and leaves CJ less functional. My dad has offered to come out as early as next Wednesday and stay for about a week. If anyone was planning to come out, we could use someone after that. Don’t ask me when we want you; tell me when you’re available and willing to come out between then and the end of August and I’ll plug you into the schedule.
The Beazleys have been fabulous and will continue to be. Merrilee is watching CJ tonight so I can go see Harry Potter (Brought my “Muggle” t-shirt and everything, just in case!) and they’re letting me borrow a car this weekend in the guise of having me take them to the airport tomorrow.
Now back to the important stuff, Charlotte. We went to the circus last night and although she liked the pretty horses and she got downright excited to see the elephants, she didn’t make it to the intermission. She was pretty mellow through the pre-show stuff but perked up when the lights went down. Unfortunately they were definitely trying to be Cirque de Parfait which didn’t work in such a large venue and they lost CJ pretty early on. The ringmaster was actually a pretty good Broadway-style singer from Houston who had been with the circus for a couple years now. There was a lot more song and dance stuff than I remember from the one time I saw Ringling Bros. before. There was a moderately silly Jets vs Sharks thing during the Act I finale but one thing really grabbed me. One group of clown “henchmen” came out bouncing on what I can only describe as innertubes with saddles. They did some very cool flips and such off and onto them and now I want one for my own. They also did the motorcycles in the ball trick but they kept adding more and more riders until there were 7 in there. I can’t for the life of me figure out how they all fit in there without knocking each other’s ankles.
Throughout Act I, Charlotte became more and more clingy and finally just climbed onto my lap facing me, put her head on my shoulder and zonked. She slept through the extremely loud finale so I just grabbed everything and headed out when the lights came up for intermission. I was quite the site heading up the stairs with CJ’s unconscious body in one hand, the stroller in the other, and the backpack on my back. At least she was awake on the way down to the seats.
I was going to just call a cab and go back to The House but I just happened to run into the manager of the outing and she called the bus to come get us.
A nice side line, the bus driver told me her story as we rode back to The House last night. Her son was diagnosed with leukemia back in 2000 and spent the next 4 years being treated at MDAnderson. She lived in The House for 4 years while he was treated. She gave up everything to be with him including a successful business and most of her friends and family back home. He’s now 18 and going into college and she now drives the bus for The House. She feels such a connection to the families here that she’s always willing to come in on her day off to help or cover shifts or whatever it takes to make the families’ lives just a little easier. Yet another inspirational story out of a sea of them.
So keep the positive vibes aimed at Houston (with a little left over for Richmond). We’re keeping up the good fight from our end.
Love to everyone,
Rog, Rach, & CJ
p.s. I'm using Facebook for photos and Caringbridge for updates (mostly). If you don't have Facebook and want to see pics, please have someone show you. I don't want to fool with photobucket or the others.
Huge post ahead.
Some bad, but not unexpected news: While Charlotte was in her neurocognitive assessment playing games with the two ladies (whose names I've already forgotten, sorry), I got to look at the latest MRI scans with Dr. Vats (Dr. Wolfe's colleague). We didn't have the post-3rd surgery scan for comparison but the tumor is definitely still there in bits and pieces and possibly still growing. I'm going on the assumption that it's growing.
Dr. Vats also said that there was evidence that it has spread into the upper spine (again, not altogether unexpected) although the computer he used to show me the scans didn't have enough resolution to pick up what he saw on his own computer so I didn’t actually see it. I’ll take his word for it.
Now, before anyone totally freaks out, it's certainly not good news by any stretch of the imagination but the proton radiation protocol has already accounted for the possibility and now we know that it was necessary to plan for head and spine after all. That starts next Tuesday.
Dr. Vats was still very positive and confident that we’re headed down the right path. He did say that he would bring Charlotte’s case before the “tumor board” on Monday to elicit opinions and also that he would explore the possibility of injecting chemo drugs directly into her spine via an LP once every two weeks, adding to Dr. Tye’s recommendation of “throwing the book at it.”
On a good note, CJ wowed them in the assessment with her vocabulary. They’ll get back to us with the official results of the testing as soon as they tally up everything. Dr. Vats was also happy with the recovery of CJ’s left side.
I’ve had several messages from people worrying about how I’m doing emotionally and all that. First off, thanks for the concern. It does mean a lot to me to have so many folks concerned about us.
I’m hanging in there. I’m nowhere close to thriving and I have my off moments but I feel like I’m dealing pretty well. I’ve been thinking very deep and hard about my/our situation and I feel about as focused as I’ve ever felt in my entire life. Crisis sure brings perspective down to a pinpoint, doesn’t it? Nothing else matters besides my daughter’s fight against the cancer. If I have any concerns for myself, it’s how I will deal with things after everything plays out (however it plays out). Different scenarios (best and worst) run through my head all the time but so far they haven’t distracted me from the here and now. I guess I’ll have to figure that out when I get there.
I can’t really speak for Rachel but I think she’s doing a little better. Today’s news didn’t help but she’s using her resources at home, MCV (mostly Dr. Matt), and within the circle of friends & family, and finding more solid footing. Romp n’ Roll is keeping her occupied (my turn when we switch) and Meredith orchestrated a day at Diva’s for her so that will help too! Anyone wanting to donate to that cause can send checks to me.
We will need support in Houston as the proton therapy and chemo kicks in and leaves CJ less functional. My dad has offered to come out as early as next Wednesday and stay for about a week. If anyone was planning to come out, we could use someone after that. Don’t ask me when we want you; tell me when you’re available and willing to come out between then and the end of August and I’ll plug you into the schedule.
The Beazleys have been fabulous and will continue to be. Merrilee is watching CJ tonight so I can go see Harry Potter (Brought my “Muggle” t-shirt and everything, just in case!) and they’re letting me borrow a car this weekend in the guise of having me take them to the airport tomorrow.
Now back to the important stuff, Charlotte. We went to the circus last night and although she liked the pretty horses and she got downright excited to see the elephants, she didn’t make it to the intermission. She was pretty mellow through the pre-show stuff but perked up when the lights went down. Unfortunately they were definitely trying to be Cirque de Parfait which didn’t work in such a large venue and they lost CJ pretty early on. The ringmaster was actually a pretty good Broadway-style singer from Houston who had been with the circus for a couple years now. There was a lot more song and dance stuff than I remember from the one time I saw Ringling Bros. before. There was a moderately silly Jets vs Sharks thing during the Act I finale but one thing really grabbed me. One group of clown “henchmen” came out bouncing on what I can only describe as innertubes with saddles. They did some very cool flips and such off and onto them and now I want one for my own. They also did the motorcycles in the ball trick but they kept adding more and more riders until there were 7 in there. I can’t for the life of me figure out how they all fit in there without knocking each other’s ankles.
Throughout Act I, Charlotte became more and more clingy and finally just climbed onto my lap facing me, put her head on my shoulder and zonked. She slept through the extremely loud finale so I just grabbed everything and headed out when the lights came up for intermission. I was quite the site heading up the stairs with CJ’s unconscious body in one hand, the stroller in the other, and the backpack on my back. At least she was awake on the way down to the seats.
I was going to just call a cab and go back to The House but I just happened to run into the manager of the outing and she called the bus to come get us.
A nice side line, the bus driver told me her story as we rode back to The House last night. Her son was diagnosed with leukemia back in 2000 and spent the next 4 years being treated at MDAnderson. She lived in The House for 4 years while he was treated. She gave up everything to be with him including a successful business and most of her friends and family back home. He’s now 18 and going into college and she now drives the bus for The House. She feels such a connection to the families here that she’s always willing to come in on her day off to help or cover shifts or whatever it takes to make the families’ lives just a little easier. Yet another inspirational story out of a sea of them.
So keep the positive vibes aimed at Houston (with a little left over for Richmond). We’re keeping up the good fight from our end.
Love to everyone,
Rog, Rach, & CJ
p.s. I'm using Facebook for photos and Caringbridge for updates (mostly). If you don't have Facebook and want to see pics, please have someone show you. I don't want to fool with photobucket or the others.
Wednesday, July 15, 2009
Good Appointments Today
Oi! I keep not learning my lesson.
Had a really long post done and I had even highlighted and copied it just in case but the computer updated itself when I was doing something with Charlotte and restarted, which I guess reset the clipboard. Drat!
Suffice to say we had good appointments today including audiology and a followup with the Children's Cancer Center.
Charlotte will NOT have to be NPO for chemo which means she can eat breakfast.
Her topotecan will be administered via IV just like at MCV.
Her temazolamide (sp?) will be compounded into liquid form. (More chocolate for breakfast!)
She won't have to tace accutane while on proton therapy due to its effect on the skin.
They hadn't read the MRI scans as of her appointment time but it should be available on Mymdanderson.org very soon if not already.
Tonight we are going to the circus at Reliant Stadium courtesy of THE HOUSE. The tree huggin hippie in me says we shouldn't go because of animal rights issues but the exhausted dad in me says my daughter will love it so we're going. I'll try to re-compose the long update later.
Had a really long post done and I had even highlighted and copied it just in case but the computer updated itself when I was doing something with Charlotte and restarted, which I guess reset the clipboard. Drat!
Suffice to say we had good appointments today including audiology and a followup with the Children's Cancer Center.
Charlotte will NOT have to be NPO for chemo which means she can eat breakfast.
Her topotecan will be administered via IV just like at MCV.
Her temazolamide (sp?) will be compounded into liquid form. (More chocolate for breakfast!)
She won't have to tace accutane while on proton therapy due to its effect on the skin.
They hadn't read the MRI scans as of her appointment time but it should be available on Mymdanderson.org very soon if not already.
Tonight we are going to the circus at Reliant Stadium courtesy of THE HOUSE. The tree huggin hippie in me says we shouldn't go because of animal rights issues but the exhausted dad in me says my daughter will love it so we're going. I'll try to re-compose the long update later.
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