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
Showing posts with label Houston. Show all posts
Showing posts with label Houston. Show all posts
Friday, August 7, 2009
Tuesday, August 4, 2009
Update and Quirky Charlotte Observations and Sayings
It's been an emotional couple of days for me, but in a subdued way. I'm not totally upset or anything and I'm not really in a bad place. It's weird and difficult to explain. Like everything else with this journey, running the marathon is exhausting. And this jaunt in Houston is like a mini-marathon within the marathon. It's weird to be out of familiar surroundings (although after a while everything here starts to look familiar and "feel" like home). It's strange to not have access to a car 24/7 (and yet strangely liberating). It's unusual for me not to be uber-busy and always running to one thing or another. Yet that is probably a good change. If it weren't for the fact that I'm hanging out in medical facilities almost every day, this would almost be a vacation. It's definitely an opportunity for me to relax a little. I still have to think about work but that only takes up about 10% of my day (as opposed to the 60-70% of my day when I'm in Richmond). I've done more "reading for pleasure" in the last few weeks than I've done all year. And that's a very good thing.
Then there's the cancer factor. You meet families every day. We meet some at the RMH. We meet others in clinic. There's overlap (those who are living at RMH AND getting treatment at MDA). You hear their stories and you can empathize. Some have been on the journey much longer than you, others are just starting (and six months in, I feel like such a veteran). Many are here because (like us) something wasn't working and they've come here for answers. Their hospitals and medical teams back home did all they can with their resources and sent them here. Some stories are inspirational and others seem so bleak that your heart breaks. And you worry if down the line your story could echo theirs. I met a 16 year old girl yesterday who has been battling medulloblastoma with remissions and recurrences for over 8 years. Scary.
Everyone seems to deal with their own personal trauma in their own way (of course) and we slug along. The parents exchange knowing looks, sighs, and smiles. Awake at 7 AM...off to the grind of the clinic...shuttling around to appointments all day...home to dinner. And the kids play and laugh...and cry. Like I said, it's surreal and almost hard to explain.
I very much miss Roger. It's difficult for us to be apart. We are usually each other's sounding boards and even though we can talk/skype every night and text throughout the day, it's not the same as being there. Fortunately, Aunt B, Aunt Lynn, and Uncle Terry will be here Saturday, closely followed by Roger, and I am planning a date for just the two of us Saturday night. We just need some together time.
yesterday, Charlotte actually broke down crying as we were waiting for proton therapy because she (finally) decided she was hungry. I told her she couldn't eat and she just bawled. Today was better. I let her sleep as long as she wanted and she didn't get up till after 9 AM. She also ate some cheddar bunnies (thanks Aunt Rebecca!) right before bed so I think/hope that helped. She's been very tired and clingy. Still cries at the least little thing but she is eating ok and her weight is still stable. Nothing major in the way of symptoms. The medical teams just marvel at her every step of the way. Surprisingly, her hair is not thinning and her skin still looks ok (it can get burned/red or very thin and translucent) but that can be stable for a while and then change pretty rapdly. Good progress on the regularity front too. PLUS, miracle of miracles, we actually got in and out of radiation on time today!
I made the mistake of trying to walk to the proton center this morning. It really didn't seem that hot at 10 AM but halfway there, I was soaking in sweat. Didn't help that I was carrying a pretty heavy backpack and pushing a stroller. I needed the exercise and the shuttle schedule wasn't really jiving with our schedule so I figured it wouldn't be too bad. It was less than a mile walk. I made it but I was DRENCHED by the time I got there. That was my workout. Charlotte was fine (she got to ride...in the shade, no less). Needless to say, we took the shuttle home. Heard on the radio we might set a record for temp her today. Somewhere near 100. Geez!
So that's all the news I have for today. We're just hanging around waiting for dinner. Thanks for all the cards, letters, and care packages. Charlotte enjoys reading all the cards. We got a very funny Hawaiian postcard yesterday from her friend Bridget and it made her laugh.
Just heard that the Bonitas made it back to Tennessee safely. Good to hear! Love to everyone!
Rachel and CJ
Update:
And now it's time for "quirky Charlotte observations and sayings":
1. She likes adding a -k to the end of words, particularly saying "O-cake" instead of "O-K". She also likes playing with word sounds so if I say "mish mash" she'll say "bish bash", etc. What good phonological skills!
2. As mentioned before, she LOVES to retell the plots of some of her favorite TV shows and movies. As she is falling asleep some nights, she will be quiet for the longest time (you'll think she's asleep) and then out of the blue she will tell you some plot point from Diego or Blue's latest adventure.
3. She has developed this odd habit of not wanting to eat any "broken" food. She won't eat goldfish that are missing pieces (not whole) and does the same with the cheddar bunnies. She always gives the broken pieces to me ("You can eat these mommy"). This applies to both anthropomorphic food (i.e., goldfish, bunnies) and other food (pieces of cheese).
4. The other day, out of the blue, she said, "Mommy, I really liked it when I was a baby in your tummy." Too funny! She also added, "After that, I was born and drank from your ninnies." As long as I don't have to explain to her how she got IN my tummy, we're good.
5. She has gotten REALLY good at pressing the buttons for the elevator when we go up and down at RMH and at the proton center. As daddy likes to say, "She's a born button pusher!"
6. Today, we were working on stretching her leg muscles and the doctor had recommended adding warm towels and/or lotion to the mix. I was working on her stretches and massaging her legs with the lotion and she says, "Mom, is this my spa treatment??". I told her that yes, indeed, it was and only princesses get to go to the spa!! She loved it!
So there is your amusement for the day. never a dull moment with this chick!!
Then there's the cancer factor. You meet families every day. We meet some at the RMH. We meet others in clinic. There's overlap (those who are living at RMH AND getting treatment at MDA). You hear their stories and you can empathize. Some have been on the journey much longer than you, others are just starting (and six months in, I feel like such a veteran). Many are here because (like us) something wasn't working and they've come here for answers. Their hospitals and medical teams back home did all they can with their resources and sent them here. Some stories are inspirational and others seem so bleak that your heart breaks. And you worry if down the line your story could echo theirs. I met a 16 year old girl yesterday who has been battling medulloblastoma with remissions and recurrences for over 8 years. Scary.
Everyone seems to deal with their own personal trauma in their own way (of course) and we slug along. The parents exchange knowing looks, sighs, and smiles. Awake at 7 AM...off to the grind of the clinic...shuttling around to appointments all day...home to dinner. And the kids play and laugh...and cry. Like I said, it's surreal and almost hard to explain.
I very much miss Roger. It's difficult for us to be apart. We are usually each other's sounding boards and even though we can talk/skype every night and text throughout the day, it's not the same as being there. Fortunately, Aunt B, Aunt Lynn, and Uncle Terry will be here Saturday, closely followed by Roger, and I am planning a date for just the two of us Saturday night. We just need some together time.
yesterday, Charlotte actually broke down crying as we were waiting for proton therapy because she (finally) decided she was hungry. I told her she couldn't eat and she just bawled. Today was better. I let her sleep as long as she wanted and she didn't get up till after 9 AM. She also ate some cheddar bunnies (thanks Aunt Rebecca!) right before bed so I think/hope that helped. She's been very tired and clingy. Still cries at the least little thing but she is eating ok and her weight is still stable. Nothing major in the way of symptoms. The medical teams just marvel at her every step of the way. Surprisingly, her hair is not thinning and her skin still looks ok (it can get burned/red or very thin and translucent) but that can be stable for a while and then change pretty rapdly. Good progress on the regularity front too. PLUS, miracle of miracles, we actually got in and out of radiation on time today!
I made the mistake of trying to walk to the proton center this morning. It really didn't seem that hot at 10 AM but halfway there, I was soaking in sweat. Didn't help that I was carrying a pretty heavy backpack and pushing a stroller. I needed the exercise and the shuttle schedule wasn't really jiving with our schedule so I figured it wouldn't be too bad. It was less than a mile walk. I made it but I was DRENCHED by the time I got there. That was my workout. Charlotte was fine (she got to ride...in the shade, no less). Needless to say, we took the shuttle home. Heard on the radio we might set a record for temp her today. Somewhere near 100. Geez!
So that's all the news I have for today. We're just hanging around waiting for dinner. Thanks for all the cards, letters, and care packages. Charlotte enjoys reading all the cards. We got a very funny Hawaiian postcard yesterday from her friend Bridget and it made her laugh.
Just heard that the Bonitas made it back to Tennessee safely. Good to hear! Love to everyone!
Rachel and CJ
Update:
And now it's time for "quirky Charlotte observations and sayings":
1. She likes adding a -k to the end of words, particularly saying "O-cake" instead of "O-K". She also likes playing with word sounds so if I say "mish mash" she'll say "bish bash", etc. What good phonological skills!
2. As mentioned before, she LOVES to retell the plots of some of her favorite TV shows and movies. As she is falling asleep some nights, she will be quiet for the longest time (you'll think she's asleep) and then out of the blue she will tell you some plot point from Diego or Blue's latest adventure.
3. She has developed this odd habit of not wanting to eat any "broken" food. She won't eat goldfish that are missing pieces (not whole) and does the same with the cheddar bunnies. She always gives the broken pieces to me ("You can eat these mommy"). This applies to both anthropomorphic food (i.e., goldfish, bunnies) and other food (pieces of cheese).
4. The other day, out of the blue, she said, "Mommy, I really liked it when I was a baby in your tummy." Too funny! She also added, "After that, I was born and drank from your ninnies." As long as I don't have to explain to her how she got IN my tummy, we're good.
5. She has gotten REALLY good at pressing the buttons for the elevator when we go up and down at RMH and at the proton center. As daddy likes to say, "She's a born button pusher!"
6. Today, we were working on stretching her leg muscles and the doctor had recommended adding warm towels and/or lotion to the mix. I was working on her stretches and massaging her legs with the lotion and she says, "Mom, is this my spa treatment??". I told her that yes, indeed, it was and only princesses get to go to the spa!! She loved it!
So there is your amusement for the day. never a dull moment with this chick!!
Monday, August 3, 2009
ASK Article in Boomerlife Magazine
Very quick note before I head in to the most energetic class of the year...:-)
I'm feeling pretty detached from the events in Houston. Looking forward to getting back on Saturday.
The ASK article in Boomerlife Magazine came out. Here's the link:
http://boomerlifemagazine.com/ver2/index.php?option=com_content&view=article&id=260:kids-cancer-group-is-my-passion-whats-yours&catid=58:giving-back&Itemid=58
There is a great picture of Charlotte and other kids in there. The Houston Area U of Miami Alumni Assoc is doing Ice Cream on Friday. Sorry I'm missing it!
I'm feeling pretty detached from the events in Houston. Looking forward to getting back on Saturday.
The ASK article in Boomerlife Magazine came out. Here's the link:
http://boomerlifemagazine.com/ver2/index.php?option=com_content&view=article&id=260:kids-cancer-group-is-my-passion-whats-yours&catid=58:giving-back&Itemid=58
There is a great picture of Charlotte and other kids in there. The Houston Area U of Miami Alumni Assoc is doing Ice Cream on Friday. Sorry I'm missing it!
Sunday, August 2, 2009
Our Trip to Galveston
She slept in today (past 9) and woke up pretty happy. The Bonitas came to get us and we headed towards Galveston. It was still hot but cloudy. We enjoyed the drive and got there just about lunch time. We had a picnic lunch in the car and then ventured down to the beach. Of course, we kept her extra shaded and doubly sunscreened but we had a nice big umbrella so Charlotte could make sandcastles with Grandpa. She even ventured out into the water for a little wading. (just up to her ankles or so...
Pretty soon she got tired and we got hot so we headed back towards Houston. There is still a LOT of hurricane damage (from Ike) leftover in Galveston. Lots of damaged buildings, blue tarp roofs, and abandoned businesses and homes. Very sad. Lots of leafless trees too. They will come back in time.
We stopped at the grocery store on the way into town to "load up" for the week. Grandpa and Bonita leave tomorrow morning to head back to Tennessee. They've been on the road for one thing or another since early July so we are very grateful for their visit to Houston. Safe travels!
One of the little girls that Charlotte plays with had a birthday today (she turned 3) so Charlotte got her a little present (some hair clips) and we broke out the craft kit that Aunt Shelley sent us and made her a ziploc bag and crepe paper butterfly. Then Charlotte really started getting into the crafts so we did about 3 of them. My Aunt sent us this box with about 30 different crafts all "ready to go" in individual ziploc bags with instructions, materials, etc. Charlotte wasn't too interested at first but today she was all into it. We made the Old Lady Who Swallowed a Fly craft by coloring the animals and the lady and then gluing a clear "skirt" in front of the lady. The animals go into the skirt as we sing the song. Charlotte thought that was funny. We also made a "spaghetti bowl" out of yarn and glue: wrapping it round and round a balloon in layers. We are supposed to let it dry overnight and then we take it out of the balloon mold. It's supposed to make a small, stiff bowl. We'll see how it turns out. So anyway, we were crafty today...
This evening, dinner was Indian food (YUM!). It was really good. Of course, Charlotte didn't have any but there was a magician on after dinner and Charlotte really enjoyed that. He did a lot of sleight of hand tricks and his finale was a levitation trick (he levitated about a foot into the air). She was captivated by the whole show and laughed at a lot of his jokes.
Now she's watching her "stories" and relaxing. Charlotte and I are back to the grind tomorrow morning. Labs, doctor appointment, and proton therapy. Another busy week.
Pretty soon she got tired and we got hot so we headed back towards Houston. There is still a LOT of hurricane damage (from Ike) leftover in Galveston. Lots of damaged buildings, blue tarp roofs, and abandoned businesses and homes. Very sad. Lots of leafless trees too. They will come back in time.
We stopped at the grocery store on the way into town to "load up" for the week. Grandpa and Bonita leave tomorrow morning to head back to Tennessee. They've been on the road for one thing or another since early July so we are very grateful for their visit to Houston. Safe travels!
One of the little girls that Charlotte plays with had a birthday today (she turned 3) so Charlotte got her a little present (some hair clips) and we broke out the craft kit that Aunt Shelley sent us and made her a ziploc bag and crepe paper butterfly. Then Charlotte really started getting into the crafts so we did about 3 of them. My Aunt sent us this box with about 30 different crafts all "ready to go" in individual ziploc bags with instructions, materials, etc. Charlotte wasn't too interested at first but today she was all into it. We made the Old Lady Who Swallowed a Fly craft by coloring the animals and the lady and then gluing a clear "skirt" in front of the lady. The animals go into the skirt as we sing the song. Charlotte thought that was funny. We also made a "spaghetti bowl" out of yarn and glue: wrapping it round and round a balloon in layers. We are supposed to let it dry overnight and then we take it out of the balloon mold. It's supposed to make a small, stiff bowl. We'll see how it turns out. So anyway, we were crafty today...
This evening, dinner was Indian food (YUM!). It was really good. Of course, Charlotte didn't have any but there was a magician on after dinner and Charlotte really enjoyed that. He did a lot of sleight of hand tricks and his finale was a levitation trick (he levitated about a foot into the air). She was captivated by the whole show and laughed at a lot of his jokes.
Now she's watching her "stories" and relaxing. Charlotte and I are back to the grind tomorrow morning. Labs, doctor appointment, and proton therapy. Another busy week.
Saturday, August 1, 2009
A Wet Saturday
The morning started...wet. I let Charlotte sleep in as long as she wanted and she woke up with a very full and leaking diaper. Oh well. So it was off to the laundry again. She still took some time waking up but we were ready by the time the Bonitas arrived. On the advice of a "local", we delayed the Galveston trip as word had it that a local radio station was organizing a Volunteer "Mission Trip" to the Galveston area today helping with cleanup from last year's Hurricane Ike. The estimate was that 700+ volunteers would be descending on the tiny island so traffic would probably be worse than usual.
We decided, instead, to check out the aquarium. Something nice and cool and (mostly) indoors. The aquarium was pretty good. As usual, Charlotte didn't want to linger many places but we did eat lunch in a restaurant that surrounded a HUGE tank with lots of sharks, tuna, grouper, eels, etc. That really piqued her interest. They also had a train ride that took the riders through a shark filled tunnel and a carousel that had aquatic life (rather than horses). Charlotte rode the dolphin.
After that, we drove around Houston, checking out some of Grandpa's old stomping grounds and then we drove out towards Pasadena to see the San Jacinto monument. This is a large obelisk (12 feet taller than the Washington Monument) dedicated to the Texas War of Independence in 1836. There was a museum inside and I actually got to go to the top for free because Bank of America customers get FREE admission to many national museums on the first weekend of the month (when you show your Bank of America card and ID). So that was neat. The view from the top was pretty spectacular. Charlotte couldn't have cared a bit...
Anyway, after a light dinner (lunch was HUGE), we are now back at the RMH. Charlotte is watching Babe. She says, "My two favorite pigs are Babe and Wilbur!". Can somebody out there tell me if they have a top 5 or top 10 list for pigs?? It cracks me up that she has "two favorite pigs". She's funny.
I think that's all I have to report. I think we are going to brave the Galveston trip tomorrow even though it may mean horrendous traffic. You only live once, right?
Happy weekend, all.
Rachel
We decided, instead, to check out the aquarium. Something nice and cool and (mostly) indoors. The aquarium was pretty good. As usual, Charlotte didn't want to linger many places but we did eat lunch in a restaurant that surrounded a HUGE tank with lots of sharks, tuna, grouper, eels, etc. That really piqued her interest. They also had a train ride that took the riders through a shark filled tunnel and a carousel that had aquatic life (rather than horses). Charlotte rode the dolphin.
After that, we drove around Houston, checking out some of Grandpa's old stomping grounds and then we drove out towards Pasadena to see the San Jacinto monument. This is a large obelisk (12 feet taller than the Washington Monument) dedicated to the Texas War of Independence in 1836. There was a museum inside and I actually got to go to the top for free because Bank of America customers get FREE admission to many national museums on the first weekend of the month (when you show your Bank of America card and ID). So that was neat. The view from the top was pretty spectacular. Charlotte couldn't have cared a bit...
Anyway, after a light dinner (lunch was HUGE), we are now back at the RMH. Charlotte is watching Babe. She says, "My two favorite pigs are Babe and Wilbur!". Can somebody out there tell me if they have a top 5 or top 10 list for pigs?? It cracks me up that she has "two favorite pigs". She's funny.
I think that's all I have to report. I think we are going to brave the Galveston trip tomorrow even though it may mean horrendous traffic. You only live once, right?
Happy weekend, all.
Rachel
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
Sunday, July 26, 2009
Rachel is in Houston Too!
My turn!
The trip out to Houston was mostly uneventful. The flight coming into Richmond was late so I made my connection in Atlanta (to Houston) with only minutes to spare. Fortunately, I only had to walk about 8 gates to make the connection. I also upgraded to business class last minute (yee haw) so it was easy on/off the plane.
On the second leg of the flight, I sat next to a mom with a 3 1/2 week old (!!!) and across the aisle from a couple with a 10-month old. If I didn't miss my daughter before, MAN!!! I was getting some serious Charlotte withdrawal so I thought the plane couldn't land fast enough.
My Houston Ground Angel was waiting for me when I got down to the terminal and in just a few minutes, I was "home sweet home" at RMH. Roger and I left Charlotte with her grandparents and headed out for a last-minute date. we ended up just going out for some good ol' Texas BBQ and talking. These are the best dates, in my opinion, because we rarely get a chance to really just talk with each other without tons of distractions. Plus: major bonus when the restaurant served Fat Tire beer. We hardly ever can get that in VA. It's a Colorado favorite!!
We came home late and relieved our wonderful babysitters then settled down for a quiet evening together. It was SO nice to have all three of us under one roof...if only for an evening. We slept in late (if you consider 8 AM late...it is in our house) and then got up for breakfast. Roger made eggs and Charlotte didn't eat much. She explored the play area and walked around downstairs.
Then we decided to take advantage of the car we have for the weekend and headed over to the Galleria. This is a mall to behold! Quite the experience and a nice, cool indoor place to window shop. We did make a few purchases. I had a Godiva gift card burning a hole in my pocket so we bought some chocolate covered strawberries and a few yummy truffles. Charlotte did a good number on the strawberries. Yay calories! We also stopped in Borders and Charlotte found a Melissa and Doug horse playset with 12 different 3" felt horse figurines. We got this for her and she has spent the evening playing with them. She decided that I got to sleep with the "grown up horses" and she is going to sleep with the "baby horses" (the horses are all the same size but somehow she decided that some are grown ups while others are babies. Whatever!
So back to the mall...we made our way down to the ice skating rink where we met up for lunch with my friend Cara. Cara and I went to high school together and we have kept in touch loosely through the years. The "keeping in touch" part has been made immensely easier lately with Facebook so when we found out that she would be spending her family vacation in Houston about the same time that we would be here, we decided to try to meet up. She got to meet Charlotte and we got to chat while eating at a Mexican restaurant by the ice rink. I think Charlotte's favorite part of the day was watching the kids ice skate. We might make a return trip to the Galleria just to do that again.
Time was getting short so we made our way back to RMH so Roger could pack last minute essentials and get ready to meet his ride (another Houston Ground Angel...actually the same one that brought me in last night.) We said our goodbyes and as far as I know, Roger is making his way home.
Charlotte spent the rest of the afternoon in the playroom with me, Granpda, and Grandma Bonita. She spent a LOT of time resting on the giant stuffed cow (it's practically lifesize and very comfy). A youth group from a local church came in to make dinner (burgers, dogs, and salad and YUMMY brownies and cookies). Charlotte's dinner consisted of a hot dog bun, about a dozen pickle chips, and a brownie and a cookie. So nutritious but at least she's eating. We said goodnight to the grandparents and headed up to our room to settle in for the night. Now she's watching Diego and resting in bed. What a day!
Tomorrow will be full of follow up appointments, her next radiation treatment, and (of course) a day full of NPO. Let's see what I can get into her by 6 AM. Hopefully, she and I will find a rhythm soon enough.
I almost forgot to mention that we actually had "coordinated outfits" today. Miss Devon (or Charlotte's Devon as she is sometimes called) sent us a great care package with a purple Dora shirt for Charlotte (that says Princess Power), a pink Peace Frogs shirt for me that says "Faith, Hope, and Love" and a big pink shirt for daddy that says "Tough Guys Wear Pink". We couldn't resist the opportunity and decided to all wear our Devon shirts today. You can see our full ensemble in the picture.
So that's all I have to report.
The trip out to Houston was mostly uneventful. The flight coming into Richmond was late so I made my connection in Atlanta (to Houston) with only minutes to spare. Fortunately, I only had to walk about 8 gates to make the connection. I also upgraded to business class last minute (yee haw) so it was easy on/off the plane.
On the second leg of the flight, I sat next to a mom with a 3 1/2 week old (!!!) and across the aisle from a couple with a 10-month old. If I didn't miss my daughter before, MAN!!! I was getting some serious Charlotte withdrawal so I thought the plane couldn't land fast enough.
My Houston Ground Angel was waiting for me when I got down to the terminal and in just a few minutes, I was "home sweet home" at RMH. Roger and I left Charlotte with her grandparents and headed out for a last-minute date. we ended up just going out for some good ol' Texas BBQ and talking. These are the best dates, in my opinion, because we rarely get a chance to really just talk with each other without tons of distractions. Plus: major bonus when the restaurant served Fat Tire beer. We hardly ever can get that in VA. It's a Colorado favorite!!
We came home late and relieved our wonderful babysitters then settled down for a quiet evening together. It was SO nice to have all three of us under one roof...if only for an evening. We slept in late (if you consider 8 AM late...it is in our house) and then got up for breakfast. Roger made eggs and Charlotte didn't eat much. She explored the play area and walked around downstairs.
Then we decided to take advantage of the car we have for the weekend and headed over to the Galleria. This is a mall to behold! Quite the experience and a nice, cool indoor place to window shop. We did make a few purchases. I had a Godiva gift card burning a hole in my pocket so we bought some chocolate covered strawberries and a few yummy truffles. Charlotte did a good number on the strawberries. Yay calories! We also stopped in Borders and Charlotte found a Melissa and Doug horse playset with 12 different 3" felt horse figurines. We got this for her and she has spent the evening playing with them. She decided that I got to sleep with the "grown up horses" and she is going to sleep with the "baby horses" (the horses are all the same size but somehow she decided that some are grown ups while others are babies. Whatever!
So back to the mall...we made our way down to the ice skating rink where we met up for lunch with my friend Cara. Cara and I went to high school together and we have kept in touch loosely through the years. The "keeping in touch" part has been made immensely easier lately with Facebook so when we found out that she would be spending her family vacation in Houston about the same time that we would be here, we decided to try to meet up. She got to meet Charlotte and we got to chat while eating at a Mexican restaurant by the ice rink. I think Charlotte's favorite part of the day was watching the kids ice skate. We might make a return trip to the Galleria just to do that again.
Time was getting short so we made our way back to RMH so Roger could pack last minute essentials and get ready to meet his ride (another Houston Ground Angel...actually the same one that brought me in last night.) We said our goodbyes and as far as I know, Roger is making his way home.
Charlotte spent the rest of the afternoon in the playroom with me, Granpda, and Grandma Bonita. She spent a LOT of time resting on the giant stuffed cow (it's practically lifesize and very comfy). A youth group from a local church came in to make dinner (burgers, dogs, and salad and YUMMY brownies and cookies). Charlotte's dinner consisted of a hot dog bun, about a dozen pickle chips, and a brownie and a cookie. So nutritious but at least she's eating. We said goodnight to the grandparents and headed up to our room to settle in for the night. Now she's watching Diego and resting in bed. What a day!
Tomorrow will be full of follow up appointments, her next radiation treatment, and (of course) a day full of NPO. Let's see what I can get into her by 6 AM. Hopefully, she and I will find a rhythm soon enough.
I almost forgot to mention that we actually had "coordinated outfits" today. Miss Devon (or Charlotte's Devon as she is sometimes called) sent us a great care package with a purple Dora shirt for Charlotte (that says Princess Power), a pink Peace Frogs shirt for me that says "Faith, Hope, and Love" and a big pink shirt for daddy that says "Tough Guys Wear Pink". We couldn't resist the opportunity and decided to all wear our Devon shirts today. You can see our full ensemble in the picture.
So that's all I have to report.
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
Saturday, July 18, 2009
We Watched the Sunrise
Charlotte woke up bright and early this morning and we watched the sunrise through our window. It was pretty nice but already very hot so no chance of early morning playground activity.
A needs request: The Ronald McDonald House here is in need of fold-down, plastic, wall-mounted, Koala brand or similar diaper changing tables in at least the two downstairs bathrooms. All they have is a dresser in the hallway between the two that they call a diaper changing table but it has no rim or safety strap or anything. It's just a dresser.
I can probably install them myself and with my dad coming, I think I could probably enlist his help with that. If anyone knows of a company somewhere in the Houston area that supplies that sort of thing and would like to donate two, please let me know. I'll also work on it from this end.
Back to our story...After a while we went downstairs for applesauce and chocolate milk. We got a call from a friend of a friend who works at the Houston Museum of Natural Science and he offered to hook us up with some passes! HECK YEAH!
The Beazleys let me use their truck while they are out of town so I took the opportunity to head over to a nearby Target and spend some of the gift cards we've been given. some fresh books and videos for CJ and a new of cheap sunglasses for me since I can't find the ones I brought with me. I do that a lot. That's why I buy cheap ones.
Then it was off to the museum. (I'm getting to know my way around town pretty well!)
The museum was very cool and we got to see dinosaurs, a mammoth (maybe a mastodon - not sure), a giant sloth that makes the one in Daytona Beach look puny, animal displays that reminded me disturbingly of Night At The Museum, the very cool Terra Cotta Warriors, and the coolest of all, the butterfies. There were some amazing butterflies in there.
Charlotte pooped out before we could get to the Diamond display but she, surprizingly, liked the Terra Cotta Warriors mostly because of the horses they had. She also found the concept of someone made up like one of the statues and scaring the crap out of people as they walked by very amusing.
When we came back to The House, there was food being served by yet another organization and I chowed while she played in the toyroom. She's eating a little so I'm not hyper concerned but it ain't much. Applesauce, some dry cheerios, and she's drinking plenty. Stop obsessing Roger.
We came back to the room with our new found treasures and after a little Dora, she was out. For three hours.
We have most of the flights back and forth set with
Update:
Not sure what was up with the partial journal post. Must have gotten distracted. (Who, me???)
All I was going to say was that we got most of the flights booked with ride requests in to the Houston Ground Angels.
I wanted to let you know that it's now 11:45pm Houston time and Charlotte barely turned over to go to sleep 15 minutes ago! 3-hour naps will do that to ya. So she'll sleep in maybe.
I also wanted to share another story. A family of 4 daughters and their parents, the mother expecting her 5th(!) a boy this time, came to The House the day before us and we've been passing pleasantries and watching out for each other's kids and all that but tonight I finally met them.
The boy, Connor, is the patient! He has a blocked bladder and they have been perfoming surgeries (3 now) in utero to place shunts to help drain the bladder. Connor keeps pulling them out. Mom said the last sonogram was a pic of Connor with his eyes open, toungue sticking out, and the end of the tube dangling defiantly in his hand. I told her I want a copy of that one!
A needs request: The Ronald McDonald House here is in need of fold-down, plastic, wall-mounted, Koala brand or similar diaper changing tables in at least the two downstairs bathrooms. All they have is a dresser in the hallway between the two that they call a diaper changing table but it has no rim or safety strap or anything. It's just a dresser.
I can probably install them myself and with my dad coming, I think I could probably enlist his help with that. If anyone knows of a company somewhere in the Houston area that supplies that sort of thing and would like to donate two, please let me know. I'll also work on it from this end.
Back to our story...After a while we went downstairs for applesauce and chocolate milk. We got a call from a friend of a friend who works at the Houston Museum of Natural Science and he offered to hook us up with some passes! HECK YEAH!
The Beazleys let me use their truck while they are out of town so I took the opportunity to head over to a nearby Target and spend some of the gift cards we've been given. some fresh books and videos for CJ and a new of cheap sunglasses for me since I can't find the ones I brought with me. I do that a lot. That's why I buy cheap ones.
Then it was off to the museum. (I'm getting to know my way around town pretty well!)
The museum was very cool and we got to see dinosaurs, a mammoth (maybe a mastodon - not sure), a giant sloth that makes the one in Daytona Beach look puny, animal displays that reminded me disturbingly of Night At The Museum, the very cool Terra Cotta Warriors, and the coolest of all, the butterfies. There were some amazing butterflies in there.
Charlotte pooped out before we could get to the Diamond display but she, surprizingly, liked the Terra Cotta Warriors mostly because of the horses they had. She also found the concept of someone made up like one of the statues and scaring the crap out of people as they walked by very amusing.
When we came back to The House, there was food being served by yet another organization and I chowed while she played in the toyroom. She's eating a little so I'm not hyper concerned but it ain't much. Applesauce, some dry cheerios, and she's drinking plenty. Stop obsessing Roger.
We came back to the room with our new found treasures and after a little Dora, she was out. For three hours.
We have most of the flights back and forth set with
Update:
Not sure what was up with the partial journal post. Must have gotten distracted. (Who, me???)
All I was going to say was that we got most of the flights booked with ride requests in to the Houston Ground Angels.
I wanted to let you know that it's now 11:45pm Houston time and Charlotte barely turned over to go to sleep 15 minutes ago! 3-hour naps will do that to ya. So she'll sleep in maybe.
I also wanted to share another story. A family of 4 daughters and their parents, the mother expecting her 5th(!) a boy this time, came to The House the day before us and we've been passing pleasantries and watching out for each other's kids and all that but tonight I finally met them.
The boy, Connor, is the patient! He has a blocked bladder and they have been perfoming surgeries (3 now) in utero to place shunts to help drain the bladder. Connor keeps pulling them out. Mom said the last sonogram was a pic of Connor with his eyes open, toungue sticking out, and the end of the tube dangling defiantly in his hand. I told her I want a copy of that one!
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.
Saturday, July 11, 2009
We're in Houston!
Well, the flights were good, the weather is hot and humid, and the family putting us up for the time being is amazing. Thanks Meredith for this connection.
Charlotte was a dream and we couldn't have asked for a more well behaved girl.
We're currently staying in an area northwest of Houston called Jersey Village. Nice little neighbourhood, but oh, is Texas flat!
After we dropped off our bags at the house, we went to get some Italian food nearby. Then back to the house and some crashing.
I hate to admit it but I'm feeling a scratchyness in my throat that usually means a cold coming on. Great. There's also a gauntlet of pioson ivy just outside. Why are some of the coolest plants so dangerous?
As I said, our hosts have been wonderful, not letting us pay for any food or the Italian lunch. They also informed us that an "anonymous donor" heard our story and arranged a $1000 donation to the cause. WOW!
We had a great dinner of rotisserie (sp?) chicken (YUM!), fruit, and angelfood cake. Charlotte finally got to see the Tinkerbell Movie. Twice. It's actually moderately funny in places with some adult humor and good "bad" puns. CJ was glued to the TV for both viewings. Then she came into the bedroom, read several books we brought along and then zonked for the night.
Tomorrow looks like a Houston Astros-Washington Nationals game is in the works for us. Whether or not I cover it officially, we'll be there.
Thanks for everyone who came to the party last night. "Successful" is an understatement.
More positive vibes and supportive energy need to go out to another of the families I follow on CB. Zac Talley passed this week. Those DIPG tumors are wreaking havoc among the CB community. His site is www.caringbridge.org/visit/zactalley
Time for bed for me. Need my strength.
Rog
Charlotte was a dream and we couldn't have asked for a more well behaved girl.
We're currently staying in an area northwest of Houston called Jersey Village. Nice little neighbourhood, but oh, is Texas flat!
After we dropped off our bags at the house, we went to get some Italian food nearby. Then back to the house and some crashing.
I hate to admit it but I'm feeling a scratchyness in my throat that usually means a cold coming on. Great. There's also a gauntlet of pioson ivy just outside. Why are some of the coolest plants so dangerous?
As I said, our hosts have been wonderful, not letting us pay for any food or the Italian lunch. They also informed us that an "anonymous donor" heard our story and arranged a $1000 donation to the cause. WOW!
We had a great dinner of rotisserie (sp?) chicken (YUM!), fruit, and angelfood cake. Charlotte finally got to see the Tinkerbell Movie. Twice. It's actually moderately funny in places with some adult humor and good "bad" puns. CJ was glued to the TV for both viewings. Then she came into the bedroom, read several books we brought along and then zonked for the night.
Tomorrow looks like a Houston Astros-Washington Nationals game is in the works for us. Whether or not I cover it officially, we'll be there.
Thanks for everyone who came to the party last night. "Successful" is an understatement.
More positive vibes and supportive energy need to go out to another of the families I follow on CB. Zac Talley passed this week. Those DIPG tumors are wreaking havoc among the CB community. His site is www.caringbridge.org/visit/zactalley
Time for bed for me. Need my strength.
Rog
Tuesday, June 9, 2009
Staying Busy, Fundraising Update
Charlotte had a great day yesterday and a very good am this morning.
Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.
Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.
One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.
So I got to go back out to deliver some more posters/flyers to friendly local businesses.
Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.
I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.
This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.
Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.
The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.
Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.
Keep cruizin' the CB sites. There are lots of amazing stories goin on!
Rog
Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.
We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.
We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)
Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.
We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.
Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.
We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.
If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.
Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.
Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!
So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.
Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.
Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?
Signing off...
Rachel
Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.
Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.
One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.
So I got to go back out to deliver some more posters/flyers to friendly local businesses.
Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.
I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.
This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.
Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.
The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.
Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.
Keep cruizin' the CB sites. There are lots of amazing stories goin on!
Rog
Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.
We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.
We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)
Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.
We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.
Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.
We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.
If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.
Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.
Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!
So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.
Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.
Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?
Signing off...
Rachel
Friday, May 22, 2009
Letter to Caringbridge and Update from Houston
Here's an email I sent to the Caringbridge folks about the thermometer over there to the right. I realize that in the scheme of our lives, this is not that high on the list but it's kind of important to us.
Dear Caringbridge,
Thank you for your reply to my email concerning your "thermometer" on the website.
I have no problem with Caringbridge fundraising and as I've said, we and our support network have donated and (until recently) planned to continue our support past the end of Charlotte's treatment. My problem is with the use of Charlotte's name as if the donation will be going to help her directly. It is very misleading. This has already been a problem as a friend of ours clicked on the link and sent a donation to Caringbridge thinking it was going to Charlotte. He is not happy and several of our fellow Caringbridge users aren't either. We've heard that other users have complained and have also been refused by you. Not the way to garner loyalty.
Dear Caringbridge,
Thank you for your reply to my email concerning your "thermometer" on the website.
I have no problem with Caringbridge fundraising and as I've said, we and our support network have donated and (until recently) planned to continue our support past the end of Charlotte's treatment. My problem is with the use of Charlotte's name as if the donation will be going to help her directly. It is very misleading. This has already been a problem as a friend of ours clicked on the link and sent a donation to Caringbridge thinking it was going to Charlotte. He is not happy and several of our fellow Caringbridge users aren't either. We've heard that other users have complained and have also been refused by you. Not the way to garner loyalty.
I will make my request only once more, please take Charlotte's name off of the thermometer ad. Paying or not paying a fee for the service is not an issue for us. Having our name associated with an organization with questionable ethics is. The thermometer idea is great. Just take the names off of it and make it clear that it's for Caringbridge and not the user. It's especially confusing when the users (like us) are frequently in the middle of fundraising themselves.
In case you didn't notice, we have over 90,000 hits from about 700 independent viewers. How many more people are following other patients as well? I would say it's very bad business to piss off that many people at once.
I've been shouting the praises of CB all over the place. I even told someone about it this morning so I have not given up on you yet. Do right by us and it could be very good for you. Refuse us, and our friends, again and we're gone. Your choice. Personally, I really like CB and don't want to leave but I have discussed it with my family and we will.
Instead of forcing this on us, why not enlist our help? Obvoiusly, there is a great deal of organizational experience here.
Sincerely,
Roger Reynolds
Don't hate them yet. We'll give them a chance to work with us. CJ update later!
Alright, here it is now, your moment of Zen...
I will warn you that I have had a very long day (and two margaritas) so I apologize in advance for any typos or "crazy talk".
We made it to and through the behemoth that IS MD Anderson fairly well. The shuttle got us to the hospital without much ado and with the help of some handy greeters, we found our way to the children's clinic.
WOW! It's quite an operation. Similar in scope to the ASK clinic at MCV but even more impressive. There was a LARGE playroom and lots of books to keep CJ more than amused. While we were there, the music therapist stopped in for a session with the kids. It was well attended and Charlotte joined in the fun after some encouragement. She even got in a request for Frosty the Snowman.
The receptionists and all the staff just LOVED her bald chicks rock shirt that she wore proudly today. She made fast friends with everyone and charmed the pants off of just about everyone in breathing distance. That's our girl.
I filled out oodles of paperwork, summarizing for the umpteenth time Charlotte's birth history, health history, developmental milestones, etc. Seriously...can we not get electronic records that automatically transfer this stuff from doctor to doctor???
I also dropped a check for $2500 for the evaluation. Turns out we are out of network here in Houston so we will start paying down that $8K deductible. Thanks to the fundraisers...we couldn't be here without you!
Our appointment for paperwork was at 9:30 and our appointment for Dr. Wolff was 10:30. We made it in to see the doc about 11 am (not bad for getting squeezed in at the last minute). Dr. Wolff came in, met us, greeted Charlotte, and got the "low down" on her history and scans. He explained the procedure with the evaluation of her tumor and how the process works and then decided to send us immediately over to see Dr. Brown in the research area of the medical school. He told us to wait and that he would get us directions and then he promptly left the building...
We were kind of left in limbo land for a while but eventually got a medical data specialist to walk us over to the medical school herself (it was about a four block walk). Meanwhile, we got to hear her interesting story: she was living in New Orleans during Katrina and ended up needing to evacuate. Interestingly (still..) she stayed during the hurricane at Nicolas Cage's house (a friend of a friend) in New Orleans and then ended up borrowing his car to get out of the city since their cars were flooded out. Crazy! She ended up in Houston and hasn't been back since.
So we met with Dr. Robert Brown who is a researcher at the University of Texas Medical School. He is also a graduate of MCV (go figure!). He shared a few journal articles which he has published on this process. The official term is morphoproteomics (for any of you interested in googling it). The science behind it is pretty much beyond my capability but basically this is a VERY new and VERY experimental process used for cancers and other diseases for which typical therapy is not successful. According to Dr. Wolff, only about a dozen people have been through this process before Charlotte and maybe only one her age. The doctor will look at the tumor markers under a microscope and analyze the life cycle of the tumor. By this process, they will recommend directions for therapy which may include drugs that are off-label (i.e. they are not typically used for cancer treatment) and/or drugs that may not have been tested on children. All the drugs are FDA approved but they may not have been through clinical trials with kids.
SOOO...we basically told Dr. Brown that we wanted to move forward with things. He gave us things to ask for (more tumor slides after Charlotte's next surgery) and we headed back towards MD Anderson for lunch. We ended up at one of the many eating establishments available on this campus where there was (surprise) a Chick-Fil-A! Hooray.
After lunch, we went back up to the clinic. We weren't exactly sure when Dr. Wolff would see us again but we knew that he was expected back from a lecture about 2 PM. Charlotte resumed her playing in the playroom and we met volunteers and child life folks who helped give her (and us) some extra TLC. The highlight of the day was getting to see this girl named Bailey ring the bell for the end of her treatment. Not sure of the diagnosis but I'm guessing Leukemia or Lymphoma. She was another cool bald chick and looked to be in her mid to late teens. There was a big announcement made as Bailey came out to ring the big bell for the end of her treatment. Charlotte walked right up to see the events and even ran up to Bailey and gave her a big hug. There wasn't a dry eye in the house. Ok, well, I was bawling!!
Then we waited...and waited...and waited. Finally about 4 (or so) we got back into the clinic again and we met with one of the other oncologists on staff. He finished taking Charlotte's health history and THEN we met with Dr. Wolff again. He helped talk us through the next steps as we discussed possible options.
We learned that there are certain chemotherapy drugs that she may be able to take very soon after surgery (depending, of course, on how the surgery plays out).
We also discussed radiation options (whole head and spine vs. localized and proton beam radiation which is only available at about three places in the country...MD Anderson is one). No decisions made today, of course. All of this depends on how the surgery plays out, how the initial rounds of chemo go, and what the morphogenesis results tell us.
But here is what was made very clear to Roger and to me: Charlotte has a very dangerous, very aggressive tumor that is (frustratingly) not responding to many of the typical therapies. We are embarking on pretty much unexplored territory when it comes to therapy options but this is pretty much all we have. There is much danger of the cancer metastisizing (into her spinal fluid or other areas of the brain) and there is much danger of the cancer continuing to grow.
Slight segueway...there is an episode of the Simpsons where Homer actually tries to gain weight so he can go on disability and work from home. In his attempt to gain weight, he goes on a super fat diet and takes the family along with him. In a scene where Homer tries to get the kids to eat fat-upon-fat, Bart responds "Dad, my heart hurts!" and Homer replies, "Butter your bacon!!!"
Well here we are....my heart hurts. And not from the buttering of the bacon. Over the last few weeks, we keep digging deeper into this process and I continue to realize how grave her conditino is. The fact that her tumor is not dying despite the poison we put in her body. The very fact that we are having to resort to experimental, aggressive, and potentially dangerous medicines to keep her alive. That makes my heart hurt.
I feel this weight in my chest that won't go away and I am genuinely sad. I fought back many tears today (and a few slipped out anyway). I know that there is still hope. I know we are not at the end of the line. But I am not nearly the picture of optimism that I felt about 3 months ago. This is hard stuff and it will take me a while to process this.
Ladies and gentlemen, the eye of the hurricane is getting ready to pass. Get ready for the rest of that oncoming storm. We can't prepare for much because EVERYTHING...every step in the next part of our journey....hangs in the balance of the step that comes before. Her chemo treatment will be determined by how well she responds to the surgery. And radiation will be determined by the success of the surgery and the results of the analysis. And all of the experimental stuff will hinge on how everything else plays out. I can't plan ANYTHING anymore...
So, just to finish the story of the day: we FINALLY left the hospital at about 6:10 PM (after being there since before 9 AM) and the hotel shuttle never came to pick us up (despite 3 telephone calls) so we eventually decided to hoof it the 1/2 mile or so back to the hotel on our own. Not a bad walk and thank goodness for Google maps on our phones.
Just so we don't end on a downer, we did have a lovely evening with Roger's Uncle Tom. We went to dinner for Tex Mex (Roger and I had been craving fish tacos and, yes, Margaritas). Charlotte was a doll and was serenaded by the mariachi band. She really loved it when they played Old McDonald!!
We will leave tomorrow and journey back to Virginia. More to update later.
Rachel
Thursday, May 21, 2009
We are Here in Houston
Well, here we are in Houston, TX.
The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!
Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.
I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.
When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!
We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.
Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.
So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:
I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....
I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)
So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.
When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.
I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.
In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)
ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.
I think that's all we have to report for now.
Rachel
The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!
Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.
I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.
When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!
We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.
Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.
So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:
I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....
I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)
So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.
When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.
I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.
In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)
ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.
I think that's all we have to report for now.
Rachel
Wednesday, May 20, 2009
Announcements
Some announcements for the week:
0. There was a green old navy jacket (adult size xs) left at the Head Shaving Party @ Romp n' Roll in April. If it belongs to you, please come by or call to claim it. It's really cute and I would take it but there's NO WAY I'm an XS :-)
1. Mini Golf/Batting Cages/Driving Range TONIGHT 7-10 PM at Glen Allen Golf on US1 to benefit Charlotte.
2. The Five Below event @ VCC seemed to be a success and Charlotte's story has really touched on the people there SO they are repeating the event for the next TWO weekends. Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes (sp?).
3. Don't forget about the Brain Tumor Awareness Benefit Concert with Susan Greenbaum and Cheryl Fare at Ashland Coffee and Tea Saturday (5/23) from 3-6 PM. The event itself does not benefit Charlotte directly but it is a great cause with great music AND there will be a 50/50 raffle for Charlotte as well. Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it.
4. A shout-out to Christy, Wendy, and Torrie for helping Roger with the FACES event at Virginia Crossings tonight.
5. A HUGE shout-out to Jackie Plank for continuing the fundraising efforts.
6. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors (Pampered Chef, Arbonne, Longaberger Baskets, etc.) selling their wares and donating a portion of the proceeds to Charlotte. Start your Christmas shopping early! Also, I think a Silent Auction is in the works.
With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" (they will cover the visit but not the tumor evaluation since that is considered experimental). We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates. Given that we do not know right now how many stem cell transplants/rounds of high dose chemo she will need and/or whether this will go on past this calendar year (since our deductible is for the calendar year), this will probably increase our out-of-pocket medical costs to anywhere between $40-100K. We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us...
That is all I have to report. I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! Whew!
Rachel
First off and VERY IMPORTANT, the little thermometer to the right isn't our idea. It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well. Might be the last one I send if they keep that kind of crap up
Be that as it may, today was a HUGE day! First off, I woke up, completely alert, at 4AM this morning. No idea why.
Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston ("Houston, Texas?!?")
This next event illustrated Cerisa's post brilliantly: While headed home, I asked Charlotte where she wanted to have lunch and she said the ever wonderful, "Chick-fil-a." When I said, OK, we're going to Chick-fil-a, she immediately said, "People eat there seven times a day!" If you don't know to what that refers, immediately open a new browser tab/window and go here:
http://www.youtube.com/watch?v=NsJHqstPuNo
No, really. Go do that now...
Hmmm dee dum dummm
Great, eh?
OK so we get to CFA and we meet Mommy there. We had a great lunch, CJ had ice cream with her lunch, and Mommy and I switched cars and Charlotte.
I then went to VA Crossings Resort to set up the Romp n' Roll stuff for the FACES of Virginia meeting. I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions.
I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. I figured that's OK since I'll have my star volunteers, Torrie (Too Tall Torrie) Heathcoat and Christy Yeadon MAN Am I glad they were there! Couldn't have done this without them. Thanks, ladies!
After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all.
So we made a lot of FACES parents very happy to be able to have a nice, relatively quiet dinner. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is. Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's why I dig this FACES of Virginia Families organization so much. That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Heck! Boss woman, Cate Neubanks is even going to yoga with us on June 6th.
I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser! I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can.
We still don't have final numbers from the burrito eating contest at Qdoba. Still working on it.
Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase.
Thanks for all your well wishes for the safe trip. See you in Houston.
Rog
p.s. We got the ReeseStrong doll and will be taking it to Houston.
0. There was a green old navy jacket (adult size xs) left at the Head Shaving Party @ Romp n' Roll in April. If it belongs to you, please come by or call to claim it. It's really cute and I would take it but there's NO WAY I'm an XS :-)
1. Mini Golf/Batting Cages/Driving Range TONIGHT 7-10 PM at Glen Allen Golf on US1 to benefit Charlotte.
2. The Five Below event @ VCC seemed to be a success and Charlotte's story has really touched on the people there SO they are repeating the event for the next TWO weekends. Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes (sp?).
3. Don't forget about the Brain Tumor Awareness Benefit Concert with Susan Greenbaum and Cheryl Fare at Ashland Coffee and Tea Saturday (5/23) from 3-6 PM. The event itself does not benefit Charlotte directly but it is a great cause with great music AND there will be a 50/50 raffle for Charlotte as well. Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it.
4. A shout-out to Christy, Wendy, and Torrie for helping Roger with the FACES event at Virginia Crossings tonight.
5. A HUGE shout-out to Jackie Plank for continuing the fundraising efforts.
6. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors (Pampered Chef, Arbonne, Longaberger Baskets, etc.) selling their wares and donating a portion of the proceeds to Charlotte. Start your Christmas shopping early! Also, I think a Silent Auction is in the works.
With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" (they will cover the visit but not the tumor evaluation since that is considered experimental). We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates. Given that we do not know right now how many stem cell transplants/rounds of high dose chemo she will need and/or whether this will go on past this calendar year (since our deductible is for the calendar year), this will probably increase our out-of-pocket medical costs to anywhere between $40-100K. We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us...
That is all I have to report. I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! Whew!
Rachel
First off and VERY IMPORTANT, the little thermometer to the right isn't our idea. It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well. Might be the last one I send if they keep that kind of crap up
Be that as it may, today was a HUGE day! First off, I woke up, completely alert, at 4AM this morning. No idea why.
Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston ("Houston, Texas?!?")
This next event illustrated Cerisa's post brilliantly: While headed home, I asked Charlotte where she wanted to have lunch and she said the ever wonderful, "Chick-fil-a." When I said, OK, we're going to Chick-fil-a, she immediately said, "People eat there seven times a day!" If you don't know to what that refers, immediately open a new browser tab/window and go here:
http://www.youtube.com/watch?v=NsJHqstPuNo
No, really. Go do that now...
Hmmm dee dum dummm
Great, eh?
OK so we get to CFA and we meet Mommy there. We had a great lunch, CJ had ice cream with her lunch, and Mommy and I switched cars and Charlotte.
I then went to VA Crossings Resort to set up the Romp n' Roll stuff for the FACES of Virginia meeting. I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions.
I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. I figured that's OK since I'll have my star volunteers, Torrie (Too Tall Torrie) Heathcoat and Christy Yeadon MAN Am I glad they were there! Couldn't have done this without them. Thanks, ladies!
After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all.
So we made a lot of FACES parents very happy to be able to have a nice, relatively quiet dinner. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is. Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's why I dig this FACES of Virginia Families organization so much. That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Heck! Boss woman, Cate Neubanks is even going to yoga with us on June 6th.
I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser! I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can.
We still don't have final numbers from the burrito eating contest at Qdoba. Still working on it.
Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase.
Thanks for all your well wishes for the safe trip. See you in Houston.
Rog
p.s. We got the ReeseStrong doll and will be taking it to Houston.
Monday, May 18, 2009
Cancer is a Hurricane
So here is your analogy of the week:
Cancer is a hurricane.
It comes on strong and weaves a path of destruction. You can fight it. You can batten down the hatches. You can even move away from areas more likely to be hit by hurricanes (like Florida) to somewhere like...oh...Kansas. But then, of course, you have to worry about tornadoes and dust storms. Heck, they've even had hurricanes in Canada. And England. It's always something...
With some hurricanes, you have a lot of warning. You can see it coming and have plenty of time to try to minimize the effects by boarding up the windows, trimming the trees, or evacuating altogether. With other hurricanes, it seems to develop so suddenly, you barely have time to grab your raincoat and duck for cover. And yet, you live where hurricanes happen so you know that they can strike. Anytime. Anywhere. [Ok, they're more likely during hurricane season but you get my drift...]
Some hurricanes are small. Category one. Tropical storms, even. They are still dangerous. They're a pain in the ass. Localized damage. A tree down here or there, the power goes out for a little while, school is closed. There is preparation and clean up and all of the standard procedures. But they are far less to fear than the Category Five. Those are definitely going to cause some serious destruction. Those are the ones you want to avoid. The power will be out for days (weeks) at a time. Your home may be destroyed or severely damaged. You could lose everything. Including your life. And sometimes when the hurricane strikes, you're still not sure (until it's passed) whether you were in a category three or a four. It doesn't really matter. When you're in the middle of the hurricane, it's scary whether the wind is blowing at 120 or 150 mph.
And in the middle of that hurricane is an eye. The eye is deceptive. In the eye, there is no wind. No rain. No tornadoes. Everything is calm and clear. You may even hear the birds come out. In the days before satellites and radar, people would step out of their homes during the eye of the hurricane only to be taken by surprise by the rest of the oncoming storm.
Because eventually, the eye passes. Not only are you left with the rest of the storm, but sometimes the most severe, most damaging, most dangerous part of thes storm is the part that follows the eye. Ironically, the most dangerous storms usually have the largest, best defined eye wall.
So here we are. In the eye of the hurricane. This storm has been brewing and raging in our little family for almost four months. We didn't have a lot of warning but we called out the National Guard and they're doing the best that they can. So are we. We have been braving this storm and doing everything we can to fight it. Some days we did better than others.
But for the last week, things have been calm. We have a direction. We have a task. We haven't spent the night in a hospital in almost three weeks (hooray). We haven't had to visit the doctor's office or therapy appointments in over a week (hooray). We've actually resumed a schedule that most closely resembles our old "normal" schedule, doing things that we haven't done in almost four months. Charlotte is happy and eating and growing and smiling and making us smile.
And yet that storm is looming on the horizon. The other side of that hurricane is getting ready to hit us and I'm not sure how long it's going to last. I am fearful of the damage that will be caused. I am fearful of the unknown. I can't stop thinking that the process will start all over again when she has surgery again next week. There will be danger. There will be risk. There will be trauma. It just comes with the territory. And then there will be the long clean up. We will need to assess the damage, look towards rehab, get a new direction for cancer treatment....and the long process begins again.
I guess this sounds very morbid and sad. I should be enjoying the "good parts". I should cherish these moments where we get to have a life again, however brief that may be.
And I do.
But it is difficult to look at that precious little girl and realize that while she laughs and tickles you and sings nursery rhymes and reads books to herself and talks about going to "Houston, Texas???" there is this ugly, dangerous, cancerous tumor growing inside of her brain. This insidious thing that refuses to be stopped by the traditional avenues is testing modern science...and my ability to remain optimistic.
I will continue to hope and believe. I will strive to look on the bright side. I will breathe while I'm still in the eye of this big hurricane. But I also stand ready because the storm clouds are building again.
So those are my thoughts for this evening. Take them or leave them. I must get some sleep for the busy day ahead. I continue to take deep breaths and live one day at a time. I think I see a Hurricane Party in my future (yeah, you Floridians out there know what I'm talkin' about!!!) Who's making the Sangria?
Rachel
Cancer is a hurricane.
It comes on strong and weaves a path of destruction. You can fight it. You can batten down the hatches. You can even move away from areas more likely to be hit by hurricanes (like Florida) to somewhere like...oh...Kansas. But then, of course, you have to worry about tornadoes and dust storms. Heck, they've even had hurricanes in Canada. And England. It's always something...
With some hurricanes, you have a lot of warning. You can see it coming and have plenty of time to try to minimize the effects by boarding up the windows, trimming the trees, or evacuating altogether. With other hurricanes, it seems to develop so suddenly, you barely have time to grab your raincoat and duck for cover. And yet, you live where hurricanes happen so you know that they can strike. Anytime. Anywhere. [Ok, they're more likely during hurricane season but you get my drift...]
Some hurricanes are small. Category one. Tropical storms, even. They are still dangerous. They're a pain in the ass. Localized damage. A tree down here or there, the power goes out for a little while, school is closed. There is preparation and clean up and all of the standard procedures. But they are far less to fear than the Category Five. Those are definitely going to cause some serious destruction. Those are the ones you want to avoid. The power will be out for days (weeks) at a time. Your home may be destroyed or severely damaged. You could lose everything. Including your life. And sometimes when the hurricane strikes, you're still not sure (until it's passed) whether you were in a category three or a four. It doesn't really matter. When you're in the middle of the hurricane, it's scary whether the wind is blowing at 120 or 150 mph.
And in the middle of that hurricane is an eye. The eye is deceptive. In the eye, there is no wind. No rain. No tornadoes. Everything is calm and clear. You may even hear the birds come out. In the days before satellites and radar, people would step out of their homes during the eye of the hurricane only to be taken by surprise by the rest of the oncoming storm.
Because eventually, the eye passes. Not only are you left with the rest of the storm, but sometimes the most severe, most damaging, most dangerous part of thes storm is the part that follows the eye. Ironically, the most dangerous storms usually have the largest, best defined eye wall.
So here we are. In the eye of the hurricane. This storm has been brewing and raging in our little family for almost four months. We didn't have a lot of warning but we called out the National Guard and they're doing the best that they can. So are we. We have been braving this storm and doing everything we can to fight it. Some days we did better than others.
But for the last week, things have been calm. We have a direction. We have a task. We haven't spent the night in a hospital in almost three weeks (hooray). We haven't had to visit the doctor's office or therapy appointments in over a week (hooray). We've actually resumed a schedule that most closely resembles our old "normal" schedule, doing things that we haven't done in almost four months. Charlotte is happy and eating and growing and smiling and making us smile.
And yet that storm is looming on the horizon. The other side of that hurricane is getting ready to hit us and I'm not sure how long it's going to last. I am fearful of the damage that will be caused. I am fearful of the unknown. I can't stop thinking that the process will start all over again when she has surgery again next week. There will be danger. There will be risk. There will be trauma. It just comes with the territory. And then there will be the long clean up. We will need to assess the damage, look towards rehab, get a new direction for cancer treatment....and the long process begins again.
I guess this sounds very morbid and sad. I should be enjoying the "good parts". I should cherish these moments where we get to have a life again, however brief that may be.
And I do.
But it is difficult to look at that precious little girl and realize that while she laughs and tickles you and sings nursery rhymes and reads books to herself and talks about going to "Houston, Texas???" there is this ugly, dangerous, cancerous tumor growing inside of her brain. This insidious thing that refuses to be stopped by the traditional avenues is testing modern science...and my ability to remain optimistic.
I will continue to hope and believe. I will strive to look on the bright side. I will breathe while I'm still in the eye of this big hurricane. But I also stand ready because the storm clouds are building again.
So those are my thoughts for this evening. Take them or leave them. I must get some sleep for the busy day ahead. I continue to take deep breaths and live one day at a time. I think I see a Hurricane Party in my future (yeah, you Floridians out there know what I'm talkin' about!!!) Who's making the Sangria?
Rachel
Sunday, May 17, 2009
Kudos Time
Another lazy rainy morning. Rachel went to "Movies and Mimosas" with some mommy friends and Charlotte and I just hung around the house snacking, reading, watching Wonderpets. etc...
Rachel is home now and pestering me needlessly.
Rachel wanted me to let you all know how needlessly I'm suffering.
So anyway, kudos time!!!
Chris from Hill Electric came in and volunteered his time to change the very high florescent lights in the gym since we don't have a ladder high enough. There's so much more light in the gym, we don't even need the big buzzy round lights. Big thanks to him.
Today, we told Charlotte that we are going on a trip this week to go see some doctors in Houston. She asked, "Houston, Texas?" She doesn't miss a beat.
Events coming up:
May 20th - Glen Allen Golf Fun-raiser (Rescheduled from earlier) on Wed, 7-10pm
FACES meeting at Virginia Crossings Starting at 7pm (still need volunteers)
May 21-23 - Houston Trip! Probably get to see Uncle Tom.
I did something impulsive and left a message on Andrew Stanton's (yes, THE Andrew Stanton from Pixar) voicemail explaining her situation and asking if there was any way Charlotte could see the new movie "Up!" It comes out the 29th and her surgery is scheduled for the 27th so I just thought I'd take a stab and see if we could work something out.
(Roger is going to stab Rachel in the head for editing without an invitation!)
Besides spelling corrections, she has nothing to add. :-)
That is all. You may go now.
Rachel is home now and pestering me needlessly.
Rachel wanted me to let you all know how needlessly I'm suffering.
So anyway, kudos time!!!
Chris from Hill Electric came in and volunteered his time to change the very high florescent lights in the gym since we don't have a ladder high enough. There's so much more light in the gym, we don't even need the big buzzy round lights. Big thanks to him.
Today, we told Charlotte that we are going on a trip this week to go see some doctors in Houston. She asked, "Houston, Texas?" She doesn't miss a beat.
Events coming up:
May 20th - Glen Allen Golf Fun-raiser (Rescheduled from earlier) on Wed, 7-10pm
FACES meeting at Virginia Crossings Starting at 7pm (still need volunteers)
May 21-23 - Houston Trip! Probably get to see Uncle Tom.
I did something impulsive and left a message on Andrew Stanton's (yes, THE Andrew Stanton from Pixar) voicemail explaining her situation and asking if there was any way Charlotte could see the new movie "Up!" It comes out the 29th and her surgery is scheduled for the 27th so I just thought I'd take a stab and see if we could work something out.
(Roger is going to stab Rachel in the head for editing without an invitation!)
Besides spelling corrections, she has nothing to add. :-)
That is all. You may go now.
Tuesday, May 12, 2009
What a Good Day!
What a good day! While I'm still not over feeling exhausted all the time, at least I'm not a bundle of nerves and anxiety over the unknown. that helps a lot.
Charlotte had a great day with visits from Wyatt and Heather, walks around the neighborhood, lots of exercising, and lots of eating.
We have a plan and an itinerary. We will be flying on Air Tran out to Houston on May 21st and returning on May 23rd. Our meeting at the clinic is on May 22nd. Thanks to our wonderful network of resources, we have learned about shuttles from the airport to the hotels/hospital area (hence no need for a rental car) as well as some good hotel accomodations for our stay.
Also, thanks to our wonderful staff at Romp n' Roll (as well as help from a few of the other Romp n' Rollers in the Richmond area), I think we've just about got coverage at the store covered while we are away.
We are still planning on surgery on the 27th. My mom leaves tomorrow to go back to Florida (bye Granny!). Roger's dad (Grandpa) and Juanita Bonita will be back her on the 26th in preparation for her surgery and we're getting some other "ducks in a row" for the weeks to come.
It's nice when the stars seem to align.
On a not so good note, it looks like the insurance appeals are not going to go as hoped. After our second appeal letter, Humana continues to maintain that we are well within our rights to choose MCV and they are well within THEIR rights to charge us an out-of-network rate for choosing MCV. End of story. The short answer is that I will follow up with our rep from the insurance commission and possibly make one final appeal through our delegate representative who has been following the case to see if he has any "pull" but I think the 8-ball is telling us "all signs point to NO".
Thank goodness to those of you who have led the charge on those fundraisers because we are gonna need them!!
Speaking of which, it looks like the Glen Allen Golf event has been rescheduled for next Wednesday (May 20th) from 7-10 PM. Mini-golf, batting cages, and driving range. Pray for sunshine and come out to see us off to Houston!
We also have the shopping events this weekend. Saturday 5/16: Five-Below (at VCC). You need to bring a flyer. We have LOTS of flyers at Romp n' Roll. 10% goes to Charlotte so stock up on your summer pool noodles, bouncy balls, and other un-necessary junk....
THEN Sunday 5/17 at Everything But Water (bathing suits, etc.) in the Short Pump Mall. I don't know if you need a flyer of some kind for this but 10-15% should go to Charlotte and I understand that there will be a chick-fil-a wheel with prizes and opportunities to help there as well (with food???). Thanks to Torrie for arranging this.
It looks like we will be getting back into town after the Brain Tumor Awareness concert at Ashland Coffee and Tea (featuring Susan Greenbaum and Cheryl Fare). I am SO sorry that we will miss this because I know it will be great. Please come out and support the event for us! There will be a 50/50 raffle for Charlotte and a chance to hear some great music.
That is all I have to say for now. Rumor has it Charlotte will be making an appearance at a Princess class tomorrow. And I get to watch the season finale of LOST tomorrow night. And did I mention that I get my new iphone tomorrow? Should be a good day....Signing off...
Rachel
Charlotte had a great day with visits from Wyatt and Heather, walks around the neighborhood, lots of exercising, and lots of eating.
We have a plan and an itinerary. We will be flying on Air Tran out to Houston on May 21st and returning on May 23rd. Our meeting at the clinic is on May 22nd. Thanks to our wonderful network of resources, we have learned about shuttles from the airport to the hotels/hospital area (hence no need for a rental car) as well as some good hotel accomodations for our stay.
Also, thanks to our wonderful staff at Romp n' Roll (as well as help from a few of the other Romp n' Rollers in the Richmond area), I think we've just about got coverage at the store covered while we are away.
We are still planning on surgery on the 27th. My mom leaves tomorrow to go back to Florida (bye Granny!). Roger's dad (Grandpa) and Juanita Bonita will be back her on the 26th in preparation for her surgery and we're getting some other "ducks in a row" for the weeks to come.
It's nice when the stars seem to align.
On a not so good note, it looks like the insurance appeals are not going to go as hoped. After our second appeal letter, Humana continues to maintain that we are well within our rights to choose MCV and they are well within THEIR rights to charge us an out-of-network rate for choosing MCV. End of story. The short answer is that I will follow up with our rep from the insurance commission and possibly make one final appeal through our delegate representative who has been following the case to see if he has any "pull" but I think the 8-ball is telling us "all signs point to NO".
Thank goodness to those of you who have led the charge on those fundraisers because we are gonna need them!!
Speaking of which, it looks like the Glen Allen Golf event has been rescheduled for next Wednesday (May 20th) from 7-10 PM. Mini-golf, batting cages, and driving range. Pray for sunshine and come out to see us off to Houston!
We also have the shopping events this weekend. Saturday 5/16: Five-Below (at VCC). You need to bring a flyer. We have LOTS of flyers at Romp n' Roll. 10% goes to Charlotte so stock up on your summer pool noodles, bouncy balls, and other un-necessary junk....
THEN Sunday 5/17 at Everything But Water (bathing suits, etc.) in the Short Pump Mall. I don't know if you need a flyer of some kind for this but 10-15% should go to Charlotte and I understand that there will be a chick-fil-a wheel with prizes and opportunities to help there as well (with food???). Thanks to Torrie for arranging this.
It looks like we will be getting back into town after the Brain Tumor Awareness concert at Ashland Coffee and Tea (featuring Susan Greenbaum and Cheryl Fare). I am SO sorry that we will miss this because I know it will be great. Please come out and support the event for us! There will be a 50/50 raffle for Charlotte and a chance to hear some great music.
That is all I have to say for now. Rumor has it Charlotte will be making an appearance at a Princess class tomorrow. And I get to watch the season finale of LOST tomorrow night. And did I mention that I get my new iphone tomorrow? Should be a good day....Signing off...
Rachel
Monday, May 11, 2009
Something of a Plan, Finally
Hello everyone,
Hope everyone had a great Mother's Day. We sure did. We opened Romp n' Roll up for open gym and let the kids have a good time. The crowd was pretty good.
Charlotte's numbers have been so good lately that we have come off the germophobe box which is great because I'm no good at being a germophobe. We even had visitors from St. James The Less. The Shiffletts came by with a Mother's Day present from the Sunday school class. Annabel (or "Annablell" as Charlotte calls her) is one of CJ's favorite friends and they had a lot of fun tickling Annabell's sister Piper on the knees!
We also took her down to Romp n' Roll to play and met up with The Hayes family from Montessori House. Anja is another of CJ's favs.
We then went to Panera with Granny and Uncle Kolby (walked from RNR in fact!) for Mother's Day dinner and then to Coldstone for dessert!
When we came home, I gave the princess a bath and settled in for the evening. A little bedtime drama having to do with a thrown book and not being tired but nothing too bad.
Overall, it was a very nice Mother's Day and as we've stated in various places, seemingly extra special.
The history of Mother's Day came up in conversation and after a little online research (We're kinda geeks that way), we found some very interesting information. I always went with the prevailing wisdom that it was just a fake holiday invented by Hallmark to sell cards. "NOT SO LIZZARD BREATH!" (there's your trivia question for the day) Turns out it's more of a peace movement/community organizing event with various religious roots. Here's one website that chronicles just a bit if the history.
http://www.momscape.com/articles/momsday.htm
As for the more serious side of things, no final word yet on anything.
Nothing.
Zip.
Nada.
Zilcho.
Feel left hanging? Us too. We're at that stage again where we really can't plan anything until we know more.
We'll let you all know as soon as we do.
Happy Monday.
OK, so we finally have something of a plan. And as usual, it looks very little like what we were hinting at last time I wrote.
After a good amount of back and forth between Rachel and Dr. Tye, it was determined that the MD Anderson team could, indeed, use the samples Dr. Tye removed during Charlotte's 2nd surgery as well as the last MRI scan so she doesn't have to have surgery this time until after we go to Houston.
That makes flying much more attractive as we won't be worrying about how she is going to handle travelling a week after a major brain operation although I was quite looking forward to the road trip in Grandpa's camping truck.
We wanted to see about Angel Flight but they would only let one parent go and we actually found a halfway decent rate on Airtran.
We've had some very generous donations come in recently which will take care of our travel expenses. Another reason to thank everyone!
That makes the schedule look something like this:
Thursday, May 21: Fly from Richmond to Houston
Friday, May 22: Meet with MD Anderson Drs.
Saturday, May 23: Fly back to Richmond
Tuesday, May 26: Check into MCV
Wednesday, May 27: Surgery #3
We'll probably be in the the hospital at least a week post-op recovering. Time to stock up on Morphine, Tylenol, and Dora videos!
We're hoping to get various family members here to help with things starting the 27th (maybe the 26th) including Grandpa and Juanita, Aunt Phyllis, Granny (again but this time WITH Grumps...I mean Gramps!), Anyone else who wants to drop in.
The Staff at Romp n' Roll has been forwarned that they may be asked to do some extra stuff (as if they haven't been asked before!) I'm confident, we will be able to work something out.
Another note about our staff at RNR. Throughout this whole experience, they have been the best staff any business owners could possibly have any right to hope for. They've come in at odd times, covered myriad classes, volunteered hours of work over and over and kept the business going when we were balls of stressed out goo! They are more perfect examples of how we couldn't do it without our support network.
We apologize to our customers for the revolving instructors but at least the replacements seem to be doing a great job.
Other news: The Glen Allen Golf Fun-raiser has been tentatively moved to Wednesday, May 20th.
Big new Fun-raiser in the works! Dr. Anna Madland of Atlee Chiropractic and Bill Roberts at WHAN 1430am Radio and I did a little mind melding and hashed out a little more of the "Yoga-thon" idea. It will be 100 "yoga-ists" doing 100 minutes of yoga And we would like to try doing this during the Strawberry Faire in Ashland on Saturday, June 6th. People would sponsor yoga-ists for $1.00 per minute and if every person on a mat got every minute sponsored, that would make $10,000 raised! So that's our goal. "Can we build it? Yes we can!" (Who knew President Obama liked Bob The Builder?
We want to get it going relatively early in the morning to avoid the heat so it will probably start 8:30 or 9:00am. We need 10 instructors and 100 (or more!) people to do the yoga. I know with our network, Dr. Anna's, and the Greater Ashland listening and reading public, we should have next to no trouble getting it together.
After the event, stick around for one of the coolest days of the year.
As per usual, Jackie Plank is knee deep in this one as well. Contact her at jplank@oscient.com to sign up or to sponsor a minute. Day-of sponsorships welcome if there is space. So please spread the word!
Thanks,
Rog
Hope everyone had a great Mother's Day. We sure did. We opened Romp n' Roll up for open gym and let the kids have a good time. The crowd was pretty good.
Charlotte's numbers have been so good lately that we have come off the germophobe box which is great because I'm no good at being a germophobe. We even had visitors from St. James The Less. The Shiffletts came by with a Mother's Day present from the Sunday school class. Annabel (or "Annablell" as Charlotte calls her) is one of CJ's favorite friends and they had a lot of fun tickling Annabell's sister Piper on the knees!
We also took her down to Romp n' Roll to play and met up with The Hayes family from Montessori House. Anja is another of CJ's favs.
We then went to Panera with Granny and Uncle Kolby (walked from RNR in fact!) for Mother's Day dinner and then to Coldstone for dessert!
When we came home, I gave the princess a bath and settled in for the evening. A little bedtime drama having to do with a thrown book and not being tired but nothing too bad.
Overall, it was a very nice Mother's Day and as we've stated in various places, seemingly extra special.
The history of Mother's Day came up in conversation and after a little online research (We're kinda geeks that way), we found some very interesting information. I always went with the prevailing wisdom that it was just a fake holiday invented by Hallmark to sell cards. "NOT SO LIZZARD BREATH!" (there's your trivia question for the day) Turns out it's more of a peace movement/community organizing event with various religious roots. Here's one website that chronicles just a bit if the history.
http://www.momscape.com/articles/momsday.htm
As for the more serious side of things, no final word yet on anything.
Nothing.
Zip.
Nada.
Zilcho.
Feel left hanging? Us too. We're at that stage again where we really can't plan anything until we know more.
We'll let you all know as soon as we do.
Happy Monday.
OK, so we finally have something of a plan. And as usual, it looks very little like what we were hinting at last time I wrote.
After a good amount of back and forth between Rachel and Dr. Tye, it was determined that the MD Anderson team could, indeed, use the samples Dr. Tye removed during Charlotte's 2nd surgery as well as the last MRI scan so she doesn't have to have surgery this time until after we go to Houston.
That makes flying much more attractive as we won't be worrying about how she is going to handle travelling a week after a major brain operation although I was quite looking forward to the road trip in Grandpa's camping truck.
We wanted to see about Angel Flight but they would only let one parent go and we actually found a halfway decent rate on Airtran.
We've had some very generous donations come in recently which will take care of our travel expenses. Another reason to thank everyone!
That makes the schedule look something like this:
Thursday, May 21: Fly from Richmond to Houston
Friday, May 22: Meet with MD Anderson Drs.
Saturday, May 23: Fly back to Richmond
Tuesday, May 26: Check into MCV
Wednesday, May 27: Surgery #3
We'll probably be in the the hospital at least a week post-op recovering. Time to stock up on Morphine, Tylenol, and Dora videos!
We're hoping to get various family members here to help with things starting the 27th (maybe the 26th) including Grandpa and Juanita, Aunt Phyllis, Granny (again but this time WITH Grumps...I mean Gramps!), Anyone else who wants to drop in.
The Staff at Romp n' Roll has been forwarned that they may be asked to do some extra stuff (as if they haven't been asked before!) I'm confident, we will be able to work something out.
Another note about our staff at RNR. Throughout this whole experience, they have been the best staff any business owners could possibly have any right to hope for. They've come in at odd times, covered myriad classes, volunteered hours of work over and over and kept the business going when we were balls of stressed out goo! They are more perfect examples of how we couldn't do it without our support network.
We apologize to our customers for the revolving instructors but at least the replacements seem to be doing a great job.
Other news: The Glen Allen Golf Fun-raiser has been tentatively moved to Wednesday, May 20th.
Big new Fun-raiser in the works! Dr. Anna Madland of Atlee Chiropractic and Bill Roberts at WHAN 1430am Radio and I did a little mind melding and hashed out a little more of the "Yoga-thon" idea. It will be 100 "yoga-ists" doing 100 minutes of yoga And we would like to try doing this during the Strawberry Faire in Ashland on Saturday, June 6th. People would sponsor yoga-ists for $1.00 per minute and if every person on a mat got every minute sponsored, that would make $10,000 raised! So that's our goal. "Can we build it? Yes we can!" (Who knew President Obama liked Bob The Builder?
We want to get it going relatively early in the morning to avoid the heat so it will probably start 8:30 or 9:00am. We need 10 instructors and 100 (or more!) people to do the yoga. I know with our network, Dr. Anna's, and the Greater Ashland listening and reading public, we should have next to no trouble getting it together.
After the event, stick around for one of the coolest days of the year.
As per usual, Jackie Plank is knee deep in this one as well. Contact her at jplank@oscient.com to sign up or to sponsor a minute. Day-of sponsorships welcome if there is space. So please spread the word!
Thanks,
Rog
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