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
Friday, August 7, 2009
Thursday, August 6, 2009
Facts about Proton Radiation and an Update
Some fun facts about Proton Radiation:
1. The first attempts to use proton radiation for cancer/medical treatment began in the 1950s but it was only in the last decade that it has become possible to develop proton beam facilities in conjunction with established medical centers.
2. Radiation is delivered through large gantries. Each gantry weighs 190 tons, sits three stories tall, and is 35 feet in diameter.
3. 2/3 of the proton therapy center is build below ground level. The walls are 8 feet thick and 50 feet high. A 20-story building could be constructed with the amount of concrete poured for the proton therapy center (and it's only 3 stories tall!).
4. The equipment for the machinery weighed 1600 tons when it arrived from Japan at the Port of Houston and it took a 31-truck caravan to bring it to the construction site.
******************************************
On a more personal note:
She's had a good day. She did start losing her hair today. Lots of little hairs on the pillow this morning when she woke up. It's falling out in little bits and clumps, and there is obviously not a whole lot to fall out anyway.
The major issue of the day seems to be getting her accutane prescription filled. For those who do not know, Accutane is usually an acne drug and it is HIGHLY dangerous to unborn babies. Causes very severe birth defects. For that reason, any female of childbearing age who is on the drug must be on TWO forms of birth control AND must take a pregnancy test each month. In order to prescribe the drug, physicians must be registered through this system called iPledge and you can't get the prescription except through an approved provider. Furthermore, as a patient you have to register on this iPledge site. If you're of childbearing age, you have to take a test so that they know that you understand the risks of pregnancy, etc. Obviously, we don't have to do that for Charlotte but we do still have to follow all the other rules. Well, we ran into a few glitches trying to get her prescription refilled here:
Glitch #1: The prescription was originally written in VA under Dr. Khan so in order to transfer the prescription and have Dr. Wolff write the script, I had to go on to the iPledge site and transfer to Dr. Wolff as my primary doctor. It took us forever just to figure out that we had to do this.
Glitch #2: When Dr. Wolff went in to approve me (well, Charlotte) as a patient, he couldn't find her in the system. We worked on this all day (in and out of treatments) and while the system kept telling me my application was in process and awaiting doctor approval, Dr. Wolff couldn't seem to find Charlotte as his patient waiting approval. We were lost in cyberspace. It only took me coming back to the clinic after radiation and both of us getting on the telephone help line with the iPledge folks to get it resolved.
Glitch #3: I took the prescription to the MD Anderson pharmacy to get it filled. At this point, it was after 4 PM. They said if I wanted the prescription compounded into liquid form (I did) it would take almost 2 hours. So we headed back to RMH to wait. Meanwhile, Charlotte ate some dinner and we've been relaxing. I go to call the pharmacy about quarter to 6 to see if it's almost ready so we can walk back to MDA and the pharmacist tells me that she tried to call me (obviously called the home number which doesn't help much) and the insurance is not approving the prescription. No idea why since they approved it before. It may be because we are trying to get it compounded into liquid form. Needless to say, it will cost $300+. Basically, I don't care about the cost at this point, I just want the meds. She says, "Do you need this today?" and I said, "YES!!!". She didn't get her morning dose and I'm not waiting any longer to get this stuff into her. So she said it would be another hour...or so. Sheesh.
So we will be heading back over to MDA in a bit. At least the weather will have cooled a bit so we can walk. Fresh air and exercise will do us good.
Otherwise, everything is ok. As ok as it can be. Thanks for all the positive vibes and support we have been getting. It really means a lot. One step. One day at a time. That's all I can do. Dr. Bitsko called me this morning and we talked so that was helpful. One more day of treatment till the weekend. And two more days till we get to see DADDY! Yay!
1. The first attempts to use proton radiation for cancer/medical treatment began in the 1950s but it was only in the last decade that it has become possible to develop proton beam facilities in conjunction with established medical centers.
2. Radiation is delivered through large gantries. Each gantry weighs 190 tons, sits three stories tall, and is 35 feet in diameter.
3. 2/3 of the proton therapy center is build below ground level. The walls are 8 feet thick and 50 feet high. A 20-story building could be constructed with the amount of concrete poured for the proton therapy center (and it's only 3 stories tall!).
4. The equipment for the machinery weighed 1600 tons when it arrived from Japan at the Port of Houston and it took a 31-truck caravan to bring it to the construction site.
******************************************
On a more personal note:
She's had a good day. She did start losing her hair today. Lots of little hairs on the pillow this morning when she woke up. It's falling out in little bits and clumps, and there is obviously not a whole lot to fall out anyway.
The major issue of the day seems to be getting her accutane prescription filled. For those who do not know, Accutane is usually an acne drug and it is HIGHLY dangerous to unborn babies. Causes very severe birth defects. For that reason, any female of childbearing age who is on the drug must be on TWO forms of birth control AND must take a pregnancy test each month. In order to prescribe the drug, physicians must be registered through this system called iPledge and you can't get the prescription except through an approved provider. Furthermore, as a patient you have to register on this iPledge site. If you're of childbearing age, you have to take a test so that they know that you understand the risks of pregnancy, etc. Obviously, we don't have to do that for Charlotte but we do still have to follow all the other rules. Well, we ran into a few glitches trying to get her prescription refilled here:
Glitch #1: The prescription was originally written in VA under Dr. Khan so in order to transfer the prescription and have Dr. Wolff write the script, I had to go on to the iPledge site and transfer to Dr. Wolff as my primary doctor. It took us forever just to figure out that we had to do this.
Glitch #2: When Dr. Wolff went in to approve me (well, Charlotte) as a patient, he couldn't find her in the system. We worked on this all day (in and out of treatments) and while the system kept telling me my application was in process and awaiting doctor approval, Dr. Wolff couldn't seem to find Charlotte as his patient waiting approval. We were lost in cyberspace. It only took me coming back to the clinic after radiation and both of us getting on the telephone help line with the iPledge folks to get it resolved.
Glitch #3: I took the prescription to the MD Anderson pharmacy to get it filled. At this point, it was after 4 PM. They said if I wanted the prescription compounded into liquid form (I did) it would take almost 2 hours. So we headed back to RMH to wait. Meanwhile, Charlotte ate some dinner and we've been relaxing. I go to call the pharmacy about quarter to 6 to see if it's almost ready so we can walk back to MDA and the pharmacist tells me that she tried to call me (obviously called the home number which doesn't help much) and the insurance is not approving the prescription. No idea why since they approved it before. It may be because we are trying to get it compounded into liquid form. Needless to say, it will cost $300+. Basically, I don't care about the cost at this point, I just want the meds. She says, "Do you need this today?" and I said, "YES!!!". She didn't get her morning dose and I'm not waiting any longer to get this stuff into her. So she said it would be another hour...or so. Sheesh.
So we will be heading back over to MDA in a bit. At least the weather will have cooled a bit so we can walk. Fresh air and exercise will do us good.
Otherwise, everything is ok. As ok as it can be. Thanks for all the positive vibes and support we have been getting. It really means a lot. One step. One day at a time. That's all I can do. Dr. Bitsko called me this morning and we talked so that was helpful. One more day of treatment till the weekend. And two more days till we get to see DADDY! Yay!
Wednesday, August 5, 2009
A Difficult Day
"There are two ways of meeting difficulties: you alter the difficulties, or you alter yourself to meet them." --Phyllis Bottome
It's been a rough day. Plain and simple.
First of all, it's hotter than Hades here. Heat index was WAY over 100 today and we spent as little time outside as possible. No walk, no exercise for me.
Her appointments went well. The clinic was VERY busy. The busiest I've ever seen it in the lobby (standing room only). They did get us in pretty quickly, though. Then we just waited for Dr. Wolff. Her labs look pretty good. White blood cells are low but everything else is looking ok. So as long as she doesn't get a fever, we're still good.
Had to run through some rigamarole trying to get her Accutane prescription renewed. Still haven't filled it yet but I should be able to do that tomorrow.
We left the clinic with JUST enough time to wait for the shuttle, jet over to the proton center, and go right into radiation. Second day running on time. We're going to get spoiled! And after today, her time bumps back to before 1 PM! Yay! That will mean (hopefully) earlier time slots and less time NPO.
We came back to the RMH and she has been watching movies most of the afternoon. She got a great care package today from Aunt Kimmie with some new horse figurines to play with and some new videos so she's in 7th heaven at the moment. Didn't eat much (one corn dog bite and some chocolate milk...that's it!) but she had a poopie. Second day in a row for that!
Now to the tough stuff. I got onto the MD Anderson website last night to check some reports. One of the great things about MDA is that all of her medical reports get posted online and we have access to it. We also have all her appointments and can cancel, reschedule, and request appointments as well as contact anyone on her medical team. It's a really great website. Anyway, I knew that Dr. Wolff had been able to compare the post-surgery (May 29th) MRI with the MDA (July 14th) MRI (finally) and had taken it to the tumor board on Monday. Low and behold, he had posted a report.
And I quote: "The images from May 29th and July 14th were compared and reviewed....Some of the tumor lesions which had been left behind after the surgery became smaller during that time but there were new contrast enhancing lesions and leptomeningeal disease which appears to be new. This has to be judged as a mixed response-progression."
So what that means in lay-person terms is that while it looks like some of the tumor left over from surgery actually got smaller (yay) there are new tumors/lesions forming and the cancer has most definitely spread to the spinal fluid (NOT yay). Dr. Wolff and I had quite the talk about this today. He is still confident that the proton radiation will help shrink the current tumors; however, he realistically does not believe that radiation alone will be enough to fight this. We are looking at a cancer that grows very quickly, very aggressively, and is starting to spread into her spine. Not good. He mentioned a new drug (Velcade) that is used as a chemotherapy agent with many patients who have resistant tumors and this will probably be an option after radiation. We will continue to push the Accutane and possibly Topotecan (we can alternate the two every two weeks) during radiation and then revise the protocol following radiation to include a new mix of meds (some of the latest ones and maybe the Velcade).
It is so hard to hear this. It is so hard to know that while some of this treatment is working, it may not be enough. This is a very tough battle. I have always been a very positive person. Those of you who have known me a long time know that I pretty much try to see the glass as half-full. Always try to put a positive spin on things. And I am stubborn. I rarely give up (to a fault, I'm sure!). But every time we get a report back on an MRI, I keep getting knocked down a peg or two (or ten). Hope is there. Faith is there. But it is a weak candle that threatens to be dowsed at every turn. Here we are back in the middle of the hurricane and my tiki torch is getting drenched.
Please keep the prayer cycle flowing. Please keep the positive energy up (for me and for Roger...and for all of us). And just understand that I may not be the happiest person right now. I live life one day at a time. No faster....Perhaps I will feel differently tomorrow. Today it's a difficult day.
Thank goodness I have an appointment booked with Dr. Bitsko already for my return next week. And my "spa visit" is next Thursday. Much needed, don't you think?
On a funny note, I called the MCV clinic today to try to get Matt Bitsko's email address and check in with him on this issue (I seemed to misplace his email address) and the person that answered the phone said, "That person no longer works here." WHAT????? was the only thing I could say. Since when? What's going on? I didn't recognize the voice or name of the person answering the phone but he said someone from the office would call me back with more information. I just about went into a panic attack. Well, I decided to call Matt's voicemail (I did have that number) and just as I reached it, my call waiting beeped and it was the clinic calling me back. The same person was on the phone and apologized saying that he had gotten confused and had misspoken. Holey moley! Don't tell a woman in crisis that her therapist is no longer available!!! That's just WRONG!
So I guess that's really all I have to report. Sorry for the downer of a post. If you need a laugh, just go to yesterday's and look at the "funny Charlotte sayings" post.
I will add one more that I forgot: Another "latest thing" is that when we go somewhere, she always picks what animals/toys she will bring (usually Mickey but sometimes one other item) but she ALSO decides what I get to bring (mom, you get to bring the tiger and the snoopy!). Oh, gee, thanks. While I'm not already schlepping around the portable DVD player, your favorite books, diapers, and all the other accoutrements and necessities, I need my own stuffed animals, apparently. Ha! I have told her that I can only bring one animal with me and that usually satisifies her. She now has a Sorcerers Apprentice Mickey that she calls "Wizard Mick" but he gets to live on MY bed. She is FUNNY I tell you!!
Ok, that is all,
Rachel
It's been a rough day. Plain and simple.
First of all, it's hotter than Hades here. Heat index was WAY over 100 today and we spent as little time outside as possible. No walk, no exercise for me.
Her appointments went well. The clinic was VERY busy. The busiest I've ever seen it in the lobby (standing room only). They did get us in pretty quickly, though. Then we just waited for Dr. Wolff. Her labs look pretty good. White blood cells are low but everything else is looking ok. So as long as she doesn't get a fever, we're still good.
Had to run through some rigamarole trying to get her Accutane prescription renewed. Still haven't filled it yet but I should be able to do that tomorrow.
We left the clinic with JUST enough time to wait for the shuttle, jet over to the proton center, and go right into radiation. Second day running on time. We're going to get spoiled! And after today, her time bumps back to before 1 PM! Yay! That will mean (hopefully) earlier time slots and less time NPO.
We came back to the RMH and she has been watching movies most of the afternoon. She got a great care package today from Aunt Kimmie with some new horse figurines to play with and some new videos so she's in 7th heaven at the moment. Didn't eat much (one corn dog bite and some chocolate milk...that's it!) but she had a poopie. Second day in a row for that!
Now to the tough stuff. I got onto the MD Anderson website last night to check some reports. One of the great things about MDA is that all of her medical reports get posted online and we have access to it. We also have all her appointments and can cancel, reschedule, and request appointments as well as contact anyone on her medical team. It's a really great website. Anyway, I knew that Dr. Wolff had been able to compare the post-surgery (May 29th) MRI with the MDA (July 14th) MRI (finally) and had taken it to the tumor board on Monday. Low and behold, he had posted a report.
And I quote: "The images from May 29th and July 14th were compared and reviewed....Some of the tumor lesions which had been left behind after the surgery became smaller during that time but there were new contrast enhancing lesions and leptomeningeal disease which appears to be new. This has to be judged as a mixed response-progression."
So what that means in lay-person terms is that while it looks like some of the tumor left over from surgery actually got smaller (yay) there are new tumors/lesions forming and the cancer has most definitely spread to the spinal fluid (NOT yay). Dr. Wolff and I had quite the talk about this today. He is still confident that the proton radiation will help shrink the current tumors; however, he realistically does not believe that radiation alone will be enough to fight this. We are looking at a cancer that grows very quickly, very aggressively, and is starting to spread into her spine. Not good. He mentioned a new drug (Velcade) that is used as a chemotherapy agent with many patients who have resistant tumors and this will probably be an option after radiation. We will continue to push the Accutane and possibly Topotecan (we can alternate the two every two weeks) during radiation and then revise the protocol following radiation to include a new mix of meds (some of the latest ones and maybe the Velcade).
It is so hard to hear this. It is so hard to know that while some of this treatment is working, it may not be enough. This is a very tough battle. I have always been a very positive person. Those of you who have known me a long time know that I pretty much try to see the glass as half-full. Always try to put a positive spin on things. And I am stubborn. I rarely give up (to a fault, I'm sure!). But every time we get a report back on an MRI, I keep getting knocked down a peg or two (or ten). Hope is there. Faith is there. But it is a weak candle that threatens to be dowsed at every turn. Here we are back in the middle of the hurricane and my tiki torch is getting drenched.
Please keep the prayer cycle flowing. Please keep the positive energy up (for me and for Roger...and for all of us). And just understand that I may not be the happiest person right now. I live life one day at a time. No faster....Perhaps I will feel differently tomorrow. Today it's a difficult day.
Thank goodness I have an appointment booked with Dr. Bitsko already for my return next week. And my "spa visit" is next Thursday. Much needed, don't you think?
On a funny note, I called the MCV clinic today to try to get Matt Bitsko's email address and check in with him on this issue (I seemed to misplace his email address) and the person that answered the phone said, "That person no longer works here." WHAT????? was the only thing I could say. Since when? What's going on? I didn't recognize the voice or name of the person answering the phone but he said someone from the office would call me back with more information. I just about went into a panic attack. Well, I decided to call Matt's voicemail (I did have that number) and just as I reached it, my call waiting beeped and it was the clinic calling me back. The same person was on the phone and apologized saying that he had gotten confused and had misspoken. Holey moley! Don't tell a woman in crisis that her therapist is no longer available!!! That's just WRONG!
So I guess that's really all I have to report. Sorry for the downer of a post. If you need a laugh, just go to yesterday's and look at the "funny Charlotte sayings" post.
I will add one more that I forgot: Another "latest thing" is that when we go somewhere, she always picks what animals/toys she will bring (usually Mickey but sometimes one other item) but she ALSO decides what I get to bring (mom, you get to bring the tiger and the snoopy!). Oh, gee, thanks. While I'm not already schlepping around the portable DVD player, your favorite books, diapers, and all the other accoutrements and necessities, I need my own stuffed animals, apparently. Ha! I have told her that I can only bring one animal with me and that usually satisifies her. She now has a Sorcerers Apprentice Mickey that she calls "Wizard Mick" but he gets to live on MY bed. She is FUNNY I tell you!!
Ok, that is all,
Rachel
Tuesday, August 4, 2009
Update and Quirky Charlotte Observations and Sayings
It's been an emotional couple of days for me, but in a subdued way. I'm not totally upset or anything and I'm not really in a bad place. It's weird and difficult to explain. Like everything else with this journey, running the marathon is exhausting. And this jaunt in Houston is like a mini-marathon within the marathon. It's weird to be out of familiar surroundings (although after a while everything here starts to look familiar and "feel" like home). It's strange to not have access to a car 24/7 (and yet strangely liberating). It's unusual for me not to be uber-busy and always running to one thing or another. Yet that is probably a good change. If it weren't for the fact that I'm hanging out in medical facilities almost every day, this would almost be a vacation. It's definitely an opportunity for me to relax a little. I still have to think about work but that only takes up about 10% of my day (as opposed to the 60-70% of my day when I'm in Richmond). I've done more "reading for pleasure" in the last few weeks than I've done all year. And that's a very good thing.
Then there's the cancer factor. You meet families every day. We meet some at the RMH. We meet others in clinic. There's overlap (those who are living at RMH AND getting treatment at MDA). You hear their stories and you can empathize. Some have been on the journey much longer than you, others are just starting (and six months in, I feel like such a veteran). Many are here because (like us) something wasn't working and they've come here for answers. Their hospitals and medical teams back home did all they can with their resources and sent them here. Some stories are inspirational and others seem so bleak that your heart breaks. And you worry if down the line your story could echo theirs. I met a 16 year old girl yesterday who has been battling medulloblastoma with remissions and recurrences for over 8 years. Scary.
Everyone seems to deal with their own personal trauma in their own way (of course) and we slug along. The parents exchange knowing looks, sighs, and smiles. Awake at 7 AM...off to the grind of the clinic...shuttling around to appointments all day...home to dinner. And the kids play and laugh...and cry. Like I said, it's surreal and almost hard to explain.
I very much miss Roger. It's difficult for us to be apart. We are usually each other's sounding boards and even though we can talk/skype every night and text throughout the day, it's not the same as being there. Fortunately, Aunt B, Aunt Lynn, and Uncle Terry will be here Saturday, closely followed by Roger, and I am planning a date for just the two of us Saturday night. We just need some together time.
yesterday, Charlotte actually broke down crying as we were waiting for proton therapy because she (finally) decided she was hungry. I told her she couldn't eat and she just bawled. Today was better. I let her sleep as long as she wanted and she didn't get up till after 9 AM. She also ate some cheddar bunnies (thanks Aunt Rebecca!) right before bed so I think/hope that helped. She's been very tired and clingy. Still cries at the least little thing but she is eating ok and her weight is still stable. Nothing major in the way of symptoms. The medical teams just marvel at her every step of the way. Surprisingly, her hair is not thinning and her skin still looks ok (it can get burned/red or very thin and translucent) but that can be stable for a while and then change pretty rapdly. Good progress on the regularity front too. PLUS, miracle of miracles, we actually got in and out of radiation on time today!
I made the mistake of trying to walk to the proton center this morning. It really didn't seem that hot at 10 AM but halfway there, I was soaking in sweat. Didn't help that I was carrying a pretty heavy backpack and pushing a stroller. I needed the exercise and the shuttle schedule wasn't really jiving with our schedule so I figured it wouldn't be too bad. It was less than a mile walk. I made it but I was DRENCHED by the time I got there. That was my workout. Charlotte was fine (she got to ride...in the shade, no less). Needless to say, we took the shuttle home. Heard on the radio we might set a record for temp her today. Somewhere near 100. Geez!
So that's all the news I have for today. We're just hanging around waiting for dinner. Thanks for all the cards, letters, and care packages. Charlotte enjoys reading all the cards. We got a very funny Hawaiian postcard yesterday from her friend Bridget and it made her laugh.
Just heard that the Bonitas made it back to Tennessee safely. Good to hear! Love to everyone!
Rachel and CJ
Update:
And now it's time for "quirky Charlotte observations and sayings":
1. She likes adding a -k to the end of words, particularly saying "O-cake" instead of "O-K". She also likes playing with word sounds so if I say "mish mash" she'll say "bish bash", etc. What good phonological skills!
2. As mentioned before, she LOVES to retell the plots of some of her favorite TV shows and movies. As she is falling asleep some nights, she will be quiet for the longest time (you'll think she's asleep) and then out of the blue she will tell you some plot point from Diego or Blue's latest adventure.
3. She has developed this odd habit of not wanting to eat any "broken" food. She won't eat goldfish that are missing pieces (not whole) and does the same with the cheddar bunnies. She always gives the broken pieces to me ("You can eat these mommy"). This applies to both anthropomorphic food (i.e., goldfish, bunnies) and other food (pieces of cheese).
4. The other day, out of the blue, she said, "Mommy, I really liked it when I was a baby in your tummy." Too funny! She also added, "After that, I was born and drank from your ninnies." As long as I don't have to explain to her how she got IN my tummy, we're good.
5. She has gotten REALLY good at pressing the buttons for the elevator when we go up and down at RMH and at the proton center. As daddy likes to say, "She's a born button pusher!"
6. Today, we were working on stretching her leg muscles and the doctor had recommended adding warm towels and/or lotion to the mix. I was working on her stretches and massaging her legs with the lotion and she says, "Mom, is this my spa treatment??". I told her that yes, indeed, it was and only princesses get to go to the spa!! She loved it!
So there is your amusement for the day. never a dull moment with this chick!!
Then there's the cancer factor. You meet families every day. We meet some at the RMH. We meet others in clinic. There's overlap (those who are living at RMH AND getting treatment at MDA). You hear their stories and you can empathize. Some have been on the journey much longer than you, others are just starting (and six months in, I feel like such a veteran). Many are here because (like us) something wasn't working and they've come here for answers. Their hospitals and medical teams back home did all they can with their resources and sent them here. Some stories are inspirational and others seem so bleak that your heart breaks. And you worry if down the line your story could echo theirs. I met a 16 year old girl yesterday who has been battling medulloblastoma with remissions and recurrences for over 8 years. Scary.
Everyone seems to deal with their own personal trauma in their own way (of course) and we slug along. The parents exchange knowing looks, sighs, and smiles. Awake at 7 AM...off to the grind of the clinic...shuttling around to appointments all day...home to dinner. And the kids play and laugh...and cry. Like I said, it's surreal and almost hard to explain.
I very much miss Roger. It's difficult for us to be apart. We are usually each other's sounding boards and even though we can talk/skype every night and text throughout the day, it's not the same as being there. Fortunately, Aunt B, Aunt Lynn, and Uncle Terry will be here Saturday, closely followed by Roger, and I am planning a date for just the two of us Saturday night. We just need some together time.
yesterday, Charlotte actually broke down crying as we were waiting for proton therapy because she (finally) decided she was hungry. I told her she couldn't eat and she just bawled. Today was better. I let her sleep as long as she wanted and she didn't get up till after 9 AM. She also ate some cheddar bunnies (thanks Aunt Rebecca!) right before bed so I think/hope that helped. She's been very tired and clingy. Still cries at the least little thing but she is eating ok and her weight is still stable. Nothing major in the way of symptoms. The medical teams just marvel at her every step of the way. Surprisingly, her hair is not thinning and her skin still looks ok (it can get burned/red or very thin and translucent) but that can be stable for a while and then change pretty rapdly. Good progress on the regularity front too. PLUS, miracle of miracles, we actually got in and out of radiation on time today!
I made the mistake of trying to walk to the proton center this morning. It really didn't seem that hot at 10 AM but halfway there, I was soaking in sweat. Didn't help that I was carrying a pretty heavy backpack and pushing a stroller. I needed the exercise and the shuttle schedule wasn't really jiving with our schedule so I figured it wouldn't be too bad. It was less than a mile walk. I made it but I was DRENCHED by the time I got there. That was my workout. Charlotte was fine (she got to ride...in the shade, no less). Needless to say, we took the shuttle home. Heard on the radio we might set a record for temp her today. Somewhere near 100. Geez!
So that's all the news I have for today. We're just hanging around waiting for dinner. Thanks for all the cards, letters, and care packages. Charlotte enjoys reading all the cards. We got a very funny Hawaiian postcard yesterday from her friend Bridget and it made her laugh.
Just heard that the Bonitas made it back to Tennessee safely. Good to hear! Love to everyone!
Rachel and CJ
Update:
And now it's time for "quirky Charlotte observations and sayings":
1. She likes adding a -k to the end of words, particularly saying "O-cake" instead of "O-K". She also likes playing with word sounds so if I say "mish mash" she'll say "bish bash", etc. What good phonological skills!
2. As mentioned before, she LOVES to retell the plots of some of her favorite TV shows and movies. As she is falling asleep some nights, she will be quiet for the longest time (you'll think she's asleep) and then out of the blue she will tell you some plot point from Diego or Blue's latest adventure.
3. She has developed this odd habit of not wanting to eat any "broken" food. She won't eat goldfish that are missing pieces (not whole) and does the same with the cheddar bunnies. She always gives the broken pieces to me ("You can eat these mommy"). This applies to both anthropomorphic food (i.e., goldfish, bunnies) and other food (pieces of cheese).
4. The other day, out of the blue, she said, "Mommy, I really liked it when I was a baby in your tummy." Too funny! She also added, "After that, I was born and drank from your ninnies." As long as I don't have to explain to her how she got IN my tummy, we're good.
5. She has gotten REALLY good at pressing the buttons for the elevator when we go up and down at RMH and at the proton center. As daddy likes to say, "She's a born button pusher!"
6. Today, we were working on stretching her leg muscles and the doctor had recommended adding warm towels and/or lotion to the mix. I was working on her stretches and massaging her legs with the lotion and she says, "Mom, is this my spa treatment??". I told her that yes, indeed, it was and only princesses get to go to the spa!! She loved it!
So there is your amusement for the day. never a dull moment with this chick!!
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
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