What can we say about January 7, 2010 that hasn't already been said? Not much. Doesn't make us think about it any less. Doesn't lighten the load of remembering. Doesn't convince the bus driver to go park somewhere else. It still pretty much sucks.
So what I'd like to do on this third anniversary of Charlotte Jennie's metamorphosis is to offer you music that reminds me (Daddy) of her.
The Great Remember from the CD Rare Bird Alert is the latest tune that has her spirit all over it. The moment I saw this video of Steve Martin playing his original clawhammer banjo composition during his tour with the Steep Canyon Rangers, I thought of her. It has a beautiful, yearning melody and yet there are still wonderful elements of Martin's humor as he tunes before he plays.
Radiance is a vocal version of a Keith Jarrett improvisation recorded by Julia Dollison and Kerry Marsh. I believe Kerry's sister put together the video slide show. It's heartbreakingly beautiful and very difficult for me to watch.
Charlotte certainly loved Dora The Explorer. She learned several Spanish words and phrases watching Dora and after her first surgery, when she started being able to speak, she counted to 10 in Spanish for us. It meant an awful lot to hear her do that.
The Chanticleer version of Franz Biebl's Ave Maria is another heartbreakingly beautiful piece and I can't hear it without thinking about Charlotte and becoming a blubbering mess. (The link comes complete with fireplace)
I believe someone introduced us to "Two Thumbs Up" by Johnny Bregar after Charlotte died or near thereabouts. It has become one of our official theme songs and Johnny has been tremendously generous to give us permission to do pretty much whatever we want with his recording. We promise not to abuse that trust.
Here's another song that someone sent to us after Jan 7, 2010. It's Jonatha Brooke's version of Woody Guthrie's, "New Star." The lyrics are actually fairly odd but it came to us at the right time and now it has all kinds of meaning Woody never intended, I'm sure.
Of course, you didn't think I was going to leave out the Disney angle, did you? Let's start with the last movie Charlotte saw in a theater, The Princess and the Frog. There isn't a tune on the soundtrack that DOESN'T make me think of Charlotte and there was a time when I would obsessively listen to it every morning when opening up at Romp n' Roll (much to the chagrin, I'm sure, of the rest of the staff); however, I will include my favorite song from the movie, "Gonna Take You There."
How about some Little Mermaid? "Part of Your World" seems so ubiquitous; so completely over played but it's a Charlotte song so I don't think I will ever get tired of it.
Next comes Mary Poppins. I don't remember exactly when this movie became one of Charlotte's favorites but all of a sudden, it was all she wanted to watch. So here's "Let's Go Fly A Kite" which has become one of our unofficial theme songs.
Last but not least by any stretch of the imagination, here's Charlotte's favorite version of Charlotte's favorite song, Frosty The Snowman by Dan Tyminsky. We actually have a video of Charlotte dancing and sort of doing karaoke to this song. We also have video of several former NFL players singing this to her on her birthday on July 9, 2009 in the the Nelson Clinic at Children's Hospital of Richmond. THAT was something to see! Waddya know? You can! Here!
I'm sure I've left off dozens of songs and I'll probably be adding a tune here and there for days. Please feel free to add your own song if it reminds you of CJ.
Today, we invite you to have a chocolate milk toast in honor of Charlotte and if you'd like, eat some "dadoo" (Cheerios or "round cereal") and mac n' cheese.
We love you so very much, Monkey Butt and miss you every day.
Showing posts with label chocolate milk. Show all posts
Showing posts with label chocolate milk. Show all posts
Monday, January 7, 2013
Friday, July 8, 2011
Six Ways to Honor Charlotte
Hello friends! First of all, for those of us who follow this blog, we apologize for the relative lack of updates. We continue to update our Facebook page and if you have not yet subscribed to our monthly newsletter, I encourage you to sign up. It's probably the best way to stay "in the loop".
Now that the business stuff is out of the way, let's talk about the calendar. Tomorrow, July 9th, would have been Charlotte's 6th birthday. Understandably, it's been a difficult few weeks as we have anticipated the arrival of this day. Roger is going to post some of his thoughts here tomorrow and I will be sharing more on my personal blog in the days to come.
- Read a book. Charlotte loved to read and look at books from an early age. While some children fall asleep with a bed full of stuffed animals, Charlotte would sleep in a bed full of books.
- Wear pink or purple. Or both. Capture your inner princess, even if it's only for a day.
- Drink a glass of chocolate milk. Charlotte liked to say "Chocolate makes everything better." We agree.
- Watch one of Charlotte's favorite movies. The movies that never left the queue included Finding Nemo, Mary Poppins, The Little Mermaid, and Frosty The Snowman. I can't think of a better thing to do in the heat of summer than think cool thoughts with Frosty.
- Make a meal for a family in need. When Charlotte was sick, we were blessed with many friends and neighbors who cared for us by supplying an extra meal (or two). It's a special gesture that means so much to a family in crisis.
- Help us honor Charlotte's memory with a donation to CJSTUF. Every little bit helps. If each of our 2800 (or so) Facebook fans donated only $6 in honor of CJ's birthday, we would be able to provide 33 $500 financial assistance grants to families in need.
Thank you, Charlotte, for blessing us with your time here on Earth.
We miss you. Every day.
Saturday, December 19, 2009
Snow!!!
The snow just kept coming down last night! I am not sure about exact levels but I have not seen snow like this fall in a one-day period in the Richmond area in a LONG time. We will surely set some records here.
It is almost 9 AM and it's still snowing! It's been going pretty steadily since 5 PM.
Those of you who live in the Richmond area know that while snows like this can happen, they are rare and far between. When we do get snow like this, it is typically in January or February, not December. Here's where I am going with this: this snow is a gift for Charlotte! I am sure it will be her last snowfall and while she won't be getting out and playing in it, she can see it from her window. Is it also a coincidence that Frosty the Snowman was on TV last night? I think not! I have asked everyone on the CJSTUF facebook page to build a snowman for CJ today (if you live where there is snow). You can upload a "fan picture" on the Facebook page as well so we can see your creations.
It's the little gifts.
Charlotte woke up about 11 PM last night as I was giving her meds and she drank a good bit of chocolate milk again. She's been drinking and stirring off and on all evening. I went to sleep about midnight but Roger was up with her and did her 3 AM meds. I woke up to find that two police cars were in our cul de sac (called out to one of the houses for some reason). With all the snow, they actually got stuck! Roger went out at one point and tried to help dig them out. A snowplow came through (which I am sure was a result of the policemen calling them out. There is no way they would come to our street at this point.) but it didn't seem to help. Anyway, at some point, the cops got everything fixed and were able to leave. THAT's how crazy this snow is!
I stayed up with her after 3 and got some sleep on the trundle bed next to hers. I put the Spa Radio channel from Pandora (on my iphone) on and the music was so relaxing. We were both snoozing.
We had some good mother/daughter moments around 7 this morning as I gave her next dose of meds. We have the morphine pump but I told our nurse to take her time getting out here today. I know the weather has made things nasty and we are doing ok.
A few folks did sign up for early morning reading but the weather has canned that as well. All is good! If you have signed up for any time this weekend and cannot make it due to weather, please just come when you can. You may call or email us ahead of time if you want to check. We completely understand. On the other hand, if you live in the neighborhood and want to venture out, come on down to Slash Court! We'll have a coffee/cocoa party!
She has been drinking the chocolate milk off and on and I actually stepped away from posting this for a bit because she has started talking pretty well. She is fairly alert and saying little things to us, answering questions and smiling. She is comfortable. That is good!
I had posted yesterday that we found a group of people (three separate people, actually) step up to help the family in Denver. Well, I received a great email last night from my high school friend Cara in Florida about this and I had to share. Her email text follows:
Just wanted to share six degrees of CJ that gave me chills today.
My good friend Katie lost her mom to lung cancer on December 22nd last year, so we've been talking some lately about doing something to honor her mom in some way, and Katie really wanted to find someone struggling through a similar situation that she could help in her mom's name. Of course Charlotte came up when we were discussing all this. Remembering that Katie and her family lived in Denver for years, I mentioned the family that you had "shouted out" for thinking Katie might know someone up there who could help out.
Today was a half day at my boys' school, so we met Katie and her 3 kiddoes at the mall for lunch and a Santa visit. Katie told me about her best friend from Denver, who is a mom of twins and who's "Moms of Multiples" group had money to give burning a hole in their pockets. Katie GLOWED when she was saying how her friend jumped onto the opportunity to help the family you know from Houston. What are the chances that these things happen? (This, to me, is how God works).
So a mom from Richmond who grew up in Port Orange travels to Houston for treatment for her little girl, and meets a family from Denver in desperate need. A high school friend of the Richmond mom has a friend raising her kids in Port Orange but who lived in Denver for years. This friend lost her mom last Christmas to lung cancer, and was searching for a way to pay it forward and honor her mom. So she calls her Denver best friend and hooks her up with the Denver mom thanks to the Richmond mom's thoughtfulness and caring in her OWN time of desperate need.
Thanks to Charlotte. And you.
Did you follow all that? This is what we want CJSTUF to be about. This is "where it's at". I am constantly amazed at the way the Holy Spirit works within our lives and within our communities to help us help each other. Complete strangers have been drawn together from all over the country and all over the world. Now they are not just helping us but reaching out to help others. Charlotte is the catalyst but YOU are the engines. The Holy Spirit is the fuel to keep that oil burning! And it never runs dry!
There's your Guideposts spiritual moment for the day. If you are somewhere there is snow, stay home if you can and be safe if you must go out. If you are somewhere sunny and warm (or at least sunny), enjoy the day and think Frosty the Snowman thoughts!
HUGS,
Rachel
Friday, August 28, 2009
One more radiation treatment to go!!!
One more radiation treatment to go!!!Thursday was a pretty easy day. Not much to report. We did go with Halle and her mom to the Children's Museum. It is FREE on Thursdays from 5-8 PM. Since school is back in session in Texas, the crowd wasn't TOO bad. The girls had a great time exploring all the exhibits.Today we had our penultimate radiation treatment. We are getting very excited. Charlotte also got to see our friend Talia ring the bell for the end of her treatment (YAY). After she finished and was waking up, I gave her the Chocolate Milk (Instant Breakfast) that has become her routine post-treatment. She started gulping it down. Then one of the nurses brought her some more food and she ate two small chocolate doughnuts a shortbread cookie, and a handful of grapes (why do i feel like I'm retelling The Very Hungry Caterpillar?) We got back to RMH just in time for lunch (well, I was hungry!). Now Charlotte is watching movies and I'm going to have my "rest time". We have tickets this evening for a Luma Light Show over at the outdoor theater in Hermann Park and we are going with some of our friends from RMH. Tomorrow will probably be some packing and hanging around. Roger arrives late Saturday night (after midnight) so "Daddy time" will officially begin on Sunday. Charlotte has been so funny. The nurses and technicians at the proton center keep asking her if they can go back to Virginia with her and she says, "No! You have to stay here and work!" Very funny. OH! Big news! Some of you may or may not know that lately Charlotte has been rather partial towards Daddy and while she is not outwardly mean to me (usually), she has said things like "I don't love you Mommy" or has definitely picked being with daddy over me. I know on a certain level that it is a very "normal" childhood behavior, but it's also been very difficult to hear her say "I don't love you" or get a nonresponse from her when I tell her I love her. Anyway, this morning, on the way to radiation, Charlotte snuggled up to me in the van and (unprompted) said, "I love you mommy. I love you SO much." That made my day. I may not hear it again for a while but it doesn't matter. That makes me happy.
Tuesday, August 11, 2009
An Update
Very good day overall yesterday.
Charlotte slept in a bit and, when she did wake up, took her accutane in the morning with only a minimal of drama. It DID take a little piece of chocolate to seal the deal but you know what we say about chocolate...
Our appointment for the "weekly see" with Dr. Mahajan was at 11:30 so the New Mexico contingent came by right at 11 and took us over. Aunt B came into the exam room with us and Uncle Ted and Aunt Lynn stayed in the lobby. Rachel had drawn up a small list of questions/concerns to cover including what chemo drug to have CJ on after the 2 week regimine of accutane ends (today). It's obvious that Dr. Mahajan and Dr. Wolff don't see entirely eye to eye so decisions are made with a certain amount of blood loss. The proton beam protocol is still so new and some of the chemo agents have been out such a short time that they are in the dark about many of the radiation/drug interactions. The worst part is when Dr. Mahajan says, "We just don't know." It's honest and makes me understand their hesitation but it's still an urgh. So I guess I'll be the squeeky wheel today, trying to get someone to make a decision because what is completely unacceptable is Charlotte NOT taking anything because they "just don't know." Dr. Mahajan reiterated what I've heard many of her team say about thinking "outside the box" but I think whenever they look outside the box, they feel like they're flopping around like fish outside the aquarium. Very intelligent, well educated, and highly compensated fish. Fish who drive BMWs and Mercedes 700 class sedans!
We also talked about possibly squeezing the last treatment (which is on Monday, August 31) into the week before so we might be able to come back that weekend. I’m pretty committed to CJ getting all of her treatments so just lopping the last day off is not an option for me. Dr. Mahajan said they could possibly do two treatments on one day but that would be two happy juice sessions which would be pretty hard on her. Something else for her to ponder.
Overall, she was pretty happy with Charlotte’s progress.
After the “weekly see” we went back out to the lobby to wait until they called us for the treatment. The appointment was supposed to be at 1:30. At 2:10 or so, I finally asked one of the medical professionals to get me an update. Apparently, it was either a bit beneath her or she has a shorter memory than me because after she went into the back for a bit, she came out, walked right by us, didn’t acknowledge us, and went through another door on the other side of the lobby. Finally, I saw Trish from CJ’s team walking by and grabbed her. She went back and it must have been time because she and another nurse both came out to get us. It was 2:35. CJ wanted Frosty sung which I guess has been something of a rarity the last couple weeks so they were happy to oblige. Any excuse to hear CJ do her famous “STOP!”
One humorous observation is the occasional nurse/doctor/technician who just obviously doesn’t feel comfortable singing with the rest of us. Yesterday, one nurse actually tried to separate herself and stand all the way across the room near the door. I DON’T THINK SO! Lyrics were thrust into her hands and she at least gave it a go. Once CJ gets into the gantry, she’s a queen. Maybe that’s why they’re behind so often. I’m sure they treat all their patients that way.
After handing over CJ, we went out to get lunch. I tried to navigate but I ended up making us drive 10 miles to go 2. We ended up driving through the medical center to go to Chipotle (your choice of pronunciation) just down the street from the proton center. Mmmm! After not eating much all morning, it didn’t take me long to polish off the entire burrito.
CJ had just come out and was sleeping in the recovery room when we got back. Aunt B and I had a great little “small talk” conversation waiting for Charlotte to wake up.
Here’s an Awww moment…I pick on my sister quite a bit. I’m the little brother, it’s my job. But I’ve said it before, Becky quite often gives me fresh perspectives on things and I’m sure she usually has little or no idea she does it. My brother Vance does that too but he’s much more obnoxious about it! ::-) While I’m here, I should also talk about Uncle Terry (Ted, Tedricks, Pieface…) and Aunt Lynn (Lynnard). They’re sister and brother too…not in that order…then again… I admire them both very highly; mostly for how hard they work and their dedication to the family. The whole family is that way. My mom was pretty formidable when it came to defending her kids and my Aunt Moreen raised two pretty awesome kids as a single mother. My Aunt Debbie passed away relatively young and dealt with kidney transplants, dialysis, needles, and all the typical medical indignities. Hell, Grandma Jay is still plugging along in spite of a stroke she had several years back. She is one tough bird! It all makes my family pretty strong. We’re quirky but strong.
Back to our story…Charlotte work up slowly and was kind of surly until we got back to The House and got some Chocolate milk into her. She perked up after that and then promptly peed on me. She was sitting on my lap and her diaper must have been more full than I thought so all of a sudden I felt to wetness! Not too much of a mess and it was a great excuse to get her into one of the MANY new outfits the NM contingent got for her. She was pretty damned cute in the new pink dress.
THEN it was off to Costco for the traditional pizza and ice cream. I just wanted to get dinner but Aunt B and Aunt Lynnard kept finding stuff they or we had to have. I don’t mind. I got the second season of Flight Of The Concords out of the deal!!!
Oh yeah, I found out that they were trying to get us a limo for our date night but the Tim McGraw concert at Reliant Stadium snapped them all up. What a great thought. Thanks guys!
Charlotte was definitely feeling better. We got pizza and after I took off the cheese and scraped off plenty of sauce (real and imaginary), she ate more than her half of the slice. Costco slices are huge! She also ate all the ice cream I gave her and finished off a good handful of animal crackers before bed. She even took all the accutane as long as I put drops of it on her animal crackers. Go figure!
Need to mention that to the nutritionist at our appointment this morning.
Then she proceeded to stay up until 1:30AM!!! What did Aunt B do to her?!?
Time to get her up. May not be pretty!
Charlotte slept in a bit and, when she did wake up, took her accutane in the morning with only a minimal of drama. It DID take a little piece of chocolate to seal the deal but you know what we say about chocolate...
Our appointment for the "weekly see" with Dr. Mahajan was at 11:30 so the New Mexico contingent came by right at 11 and took us over. Aunt B came into the exam room with us and Uncle Ted and Aunt Lynn stayed in the lobby. Rachel had drawn up a small list of questions/concerns to cover including what chemo drug to have CJ on after the 2 week regimine of accutane ends (today). It's obvious that Dr. Mahajan and Dr. Wolff don't see entirely eye to eye so decisions are made with a certain amount of blood loss. The proton beam protocol is still so new and some of the chemo agents have been out such a short time that they are in the dark about many of the radiation/drug interactions. The worst part is when Dr. Mahajan says, "We just don't know." It's honest and makes me understand their hesitation but it's still an urgh. So I guess I'll be the squeeky wheel today, trying to get someone to make a decision because what is completely unacceptable is Charlotte NOT taking anything because they "just don't know." Dr. Mahajan reiterated what I've heard many of her team say about thinking "outside the box" but I think whenever they look outside the box, they feel like they're flopping around like fish outside the aquarium. Very intelligent, well educated, and highly compensated fish. Fish who drive BMWs and Mercedes 700 class sedans!
We also talked about possibly squeezing the last treatment (which is on Monday, August 31) into the week before so we might be able to come back that weekend. I’m pretty committed to CJ getting all of her treatments so just lopping the last day off is not an option for me. Dr. Mahajan said they could possibly do two treatments on one day but that would be two happy juice sessions which would be pretty hard on her. Something else for her to ponder.
Overall, she was pretty happy with Charlotte’s progress.
After the “weekly see” we went back out to the lobby to wait until they called us for the treatment. The appointment was supposed to be at 1:30. At 2:10 or so, I finally asked one of the medical professionals to get me an update. Apparently, it was either a bit beneath her or she has a shorter memory than me because after she went into the back for a bit, she came out, walked right by us, didn’t acknowledge us, and went through another door on the other side of the lobby. Finally, I saw Trish from CJ’s team walking by and grabbed her. She went back and it must have been time because she and another nurse both came out to get us. It was 2:35. CJ wanted Frosty sung which I guess has been something of a rarity the last couple weeks so they were happy to oblige. Any excuse to hear CJ do her famous “STOP!”
One humorous observation is the occasional nurse/doctor/technician who just obviously doesn’t feel comfortable singing with the rest of us. Yesterday, one nurse actually tried to separate herself and stand all the way across the room near the door. I DON’T THINK SO! Lyrics were thrust into her hands and she at least gave it a go. Once CJ gets into the gantry, she’s a queen. Maybe that’s why they’re behind so often. I’m sure they treat all their patients that way.
After handing over CJ, we went out to get lunch. I tried to navigate but I ended up making us drive 10 miles to go 2. We ended up driving through the medical center to go to Chipotle (your choice of pronunciation) just down the street from the proton center. Mmmm! After not eating much all morning, it didn’t take me long to polish off the entire burrito.
CJ had just come out and was sleeping in the recovery room when we got back. Aunt B and I had a great little “small talk” conversation waiting for Charlotte to wake up.
Here’s an Awww moment…I pick on my sister quite a bit. I’m the little brother, it’s my job. But I’ve said it before, Becky quite often gives me fresh perspectives on things and I’m sure she usually has little or no idea she does it. My brother Vance does that too but he’s much more obnoxious about it! ::-) While I’m here, I should also talk about Uncle Terry (Ted, Tedricks, Pieface…) and Aunt Lynn (Lynnard). They’re sister and brother too…not in that order…then again… I admire them both very highly; mostly for how hard they work and their dedication to the family. The whole family is that way. My mom was pretty formidable when it came to defending her kids and my Aunt Moreen raised two pretty awesome kids as a single mother. My Aunt Debbie passed away relatively young and dealt with kidney transplants, dialysis, needles, and all the typical medical indignities. Hell, Grandma Jay is still plugging along in spite of a stroke she had several years back. She is one tough bird! It all makes my family pretty strong. We’re quirky but strong.
Back to our story…Charlotte work up slowly and was kind of surly until we got back to The House and got some Chocolate milk into her. She perked up after that and then promptly peed on me. She was sitting on my lap and her diaper must have been more full than I thought so all of a sudden I felt to wetness! Not too much of a mess and it was a great excuse to get her into one of the MANY new outfits the NM contingent got for her. She was pretty damned cute in the new pink dress.
THEN it was off to Costco for the traditional pizza and ice cream. I just wanted to get dinner but Aunt B and Aunt Lynnard kept finding stuff they or we had to have. I don’t mind. I got the second season of Flight Of The Concords out of the deal!!!
Oh yeah, I found out that they were trying to get us a limo for our date night but the Tim McGraw concert at Reliant Stadium snapped them all up. What a great thought. Thanks guys!
Charlotte was definitely feeling better. We got pizza and after I took off the cheese and scraped off plenty of sauce (real and imaginary), she ate more than her half of the slice. Costco slices are huge! She also ate all the ice cream I gave her and finished off a good handful of animal crackers before bed. She even took all the accutane as long as I put drops of it on her animal crackers. Go figure!
Need to mention that to the nutritionist at our appointment this morning.
Then she proceeded to stay up until 1:30AM!!! What did Aunt B do to her?!?
Time to get her up. May not be pretty!
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
Wednesday, July 29, 2009
Another Good Day
Another good day...except NO POOP (I feel like I'm becoming a broken record).
She slept in again this morning and barely got up when we were jetting off to the clinic. Had a nice walk over to MDA and they got us in almost immediately (plus we were early!). Dr. Wolff spent a great deal of time with us following up on things. We are still trying to track down the MRI that Joann sent so while we were talking with Dr. Wolff, he zipped an email off to Dr. Khan, Joann, Dr. Mahajan...pretty much anyone involved in her care...trying to track down the MRI. Also found out that she should have been on the accutane over the weekend. Again, typical hospital miscommunication where we thought we were waiting for the meds to be compounded and they assumed we would give it to her ourselves with our stash. I told him we would start giving her the meds this afternoon and he wants to see us again tomorrow to get the Accutane situation straightened out. He also said that he wants to get her blood drawn at least 3 times a week instead of just once per week (just in case). He was concerned about the non-poop issue and wanted to order an enema. He said I could give it myself but I didnt' feel comfortable doing that for multiple reasons:
1. I'd never given her one myself (just witnessed and assisted the nurses when she'd had them before) AND (more importantly)
2. I don't need her associating MOMMY with any more negative procedures.
The only problem was, we were only about an hour away from her proton radiation time and they didn't want to give her an enema and then have her "lose it all" on the radiation table. That could cause a whole host of problems. So we left with an appointment for 8 AM tomorrow and a prescription for lactulose which she started this afternoon. Fortunately, she took all her meds (the accutane went in the applesauce and the lactulose went into the chocolate milk) so we're good for tonight. Who knows. Maybe she'll poop before tomorrow (we can only hope...)
After the clinic, we headed over to proton center and didn't have to wait TOO long. They only took her 15 minutes late today. That's progress. Unfortunately, someone was celebrating the end of their treatment. Good for them, I guess, but there was food EVERYWHERE in the lobby. Charlotte didn't seem to mind but I really just about lost it when this very chatty woman who was waiting for her husband came over with cookies and some kind of pudding in her hand. She not only offered food but when I politely told her WHY Charlotte couldn't have any food, she continued to hold the food in front of her face and engage me in a huge conversation about her life. Oh joy. No offense to her, but I didn't really want to hear her life story and I REALLY didn't want her hanging food in front of my daughter's face (or mine for that matter since I was hungry myself).
Sometimes I really understand Charlotte's seemingly antisocial behavior. She's really not antisocial, per say, but she definitely likes her alone time. And I can totally understand that. Sometimes it's nice just to sit there with a book or a puzzle and not talk about cancer or medical treatment, or...whatever.
Anyway, after she was called in to the gantry and put to sleep, Grandpa and I went to get her prescription filled and get me some lunch. We timed it all just right and came back to find her in recovery. We were out of there by four pm. I think that's a record.
We came back to the house and she took all her meds (as mentioned) and ate some good lunch/dinner. Now it should be my turn for dinner soon. Rumor has it Ronald McDonald is coming to visit tonight!
Update:
POOOP!!!!
Yes, ladies and gentlemen, Charlotte has pooped. Maybe the lactulose finally kicked things into gear. (Plus all the "prayers for poop"!) It was kind of small (considering the amount she's consumed in the past week) but NOT hard (yay) and things are finally moving again. Maybe we can even avoid the enema tomorrow. See what the doc says.
She also ate even more tonight, having some cheese, chocolate milk, and bread crusts from the garlic toast (she likes the crust, not the soft middle). She watched the Ronald McDonald magic show from a distance but didn't want to get a picture with him or meet him.
On a slightly concerning note (it's always something, ain't it?), she is having trouble bending her knees. She's refusing to bend down to pick anything up or bend down to be changed. Have to check again with the doc about that. Apparently, pediatric PT services are hard to come by at MDA so I'm not sure what we can expect.
Have a good evening, y'all!!
Rachel
She slept in again this morning and barely got up when we were jetting off to the clinic. Had a nice walk over to MDA and they got us in almost immediately (plus we were early!). Dr. Wolff spent a great deal of time with us following up on things. We are still trying to track down the MRI that Joann sent so while we were talking with Dr. Wolff, he zipped an email off to Dr. Khan, Joann, Dr. Mahajan...pretty much anyone involved in her care...trying to track down the MRI. Also found out that she should have been on the accutane over the weekend. Again, typical hospital miscommunication where we thought we were waiting for the meds to be compounded and they assumed we would give it to her ourselves with our stash. I told him we would start giving her the meds this afternoon and he wants to see us again tomorrow to get the Accutane situation straightened out. He also said that he wants to get her blood drawn at least 3 times a week instead of just once per week (just in case). He was concerned about the non-poop issue and wanted to order an enema. He said I could give it myself but I didnt' feel comfortable doing that for multiple reasons:
1. I'd never given her one myself (just witnessed and assisted the nurses when she'd had them before) AND (more importantly)
2. I don't need her associating MOMMY with any more negative procedures.
The only problem was, we were only about an hour away from her proton radiation time and they didn't want to give her an enema and then have her "lose it all" on the radiation table. That could cause a whole host of problems. So we left with an appointment for 8 AM tomorrow and a prescription for lactulose which she started this afternoon. Fortunately, she took all her meds (the accutane went in the applesauce and the lactulose went into the chocolate milk) so we're good for tonight. Who knows. Maybe she'll poop before tomorrow (we can only hope...)
After the clinic, we headed over to proton center and didn't have to wait TOO long. They only took her 15 minutes late today. That's progress. Unfortunately, someone was celebrating the end of their treatment. Good for them, I guess, but there was food EVERYWHERE in the lobby. Charlotte didn't seem to mind but I really just about lost it when this very chatty woman who was waiting for her husband came over with cookies and some kind of pudding in her hand. She not only offered food but when I politely told her WHY Charlotte couldn't have any food, she continued to hold the food in front of her face and engage me in a huge conversation about her life. Oh joy. No offense to her, but I didn't really want to hear her life story and I REALLY didn't want her hanging food in front of my daughter's face (or mine for that matter since I was hungry myself).
Sometimes I really understand Charlotte's seemingly antisocial behavior. She's really not antisocial, per say, but she definitely likes her alone time. And I can totally understand that. Sometimes it's nice just to sit there with a book or a puzzle and not talk about cancer or medical treatment, or...whatever.
Anyway, after she was called in to the gantry and put to sleep, Grandpa and I went to get her prescription filled and get me some lunch. We timed it all just right and came back to find her in recovery. We were out of there by four pm. I think that's a record.
We came back to the house and she took all her meds (as mentioned) and ate some good lunch/dinner. Now it should be my turn for dinner soon. Rumor has it Ronald McDonald is coming to visit tonight!
Update:
POOOP!!!!
Yes, ladies and gentlemen, Charlotte has pooped. Maybe the lactulose finally kicked things into gear. (Plus all the "prayers for poop"!) It was kind of small (considering the amount she's consumed in the past week) but NOT hard (yay) and things are finally moving again. Maybe we can even avoid the enema tomorrow. See what the doc says.
She also ate even more tonight, having some cheese, chocolate milk, and bread crusts from the garlic toast (she likes the crust, not the soft middle). She watched the Ronald McDonald magic show from a distance but didn't want to get a picture with him or meet him.
On a slightly concerning note (it's always something, ain't it?), she is having trouble bending her knees. She's refusing to bend down to pick anything up or bend down to be changed. Have to check again with the doc about that. Apparently, pediatric PT services are hard to come by at MDA so I'm not sure what we can expect.
Have a good evening, y'all!!
Rachel
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!
Friday, July 17, 2009
A Couple Days Off
Wow, a day off. A couple actually. I'm planning to have quite the weekend with Charlotte if she'll let me. I actually have a little planning to do.
Harry Potter was very good. They really messed with the ending so if you're planning to go see it, don't expect the book. There were at least two major plot revisions and one sizable inconsistancy that I think they did on purpose. We'll see how they resolve it in the last movie.
Merrilee said Charlotte was nigh on perfect and the easiest babysitting gig ever. I'm not surprized.
After the movie, I accidentally (there are no such things as accidents, right?) took the other exit out of the parking garage and found myself needing to turn around to head back to The House. I figured I'd just turn at the next light and head back in that general direction. That's when I saw the COSTCO. I found a COSTCO! And it was beautiful. Bananas, really good bread, Horizon organic chocolate milk, cheese, more cheese! AH! Some people need chocolate, some need drugs and alcohol. COSTCO helps me cope.
There's a carnival today after lunch and I'm thinking there's some mini skeeball in our future.
Charlotte is resting at the moment. Not sleeping but doing her quite, self amusement thing she does sometimes. She didn't want to leave the room today so I honored that. Her appetite sure isn't what it used to be lately. I did at least get her to eat a cup of applesauce. Fluids aren't a problem. The apple juice (thanks Merrillee) and the chocolate milk (thank you, COSTCO! Thank you! Thank you! Thank you!...ahem...sorry) are flowing liberally and the diapers are heavy. No luck potty training but at least she's now letting me brush her teeth every day. Small victories.
I did laundry last night which makes me feel good. Especially the folding part. Very zen. I picked that up from Gregory Hines. Well, not PERSONALLY. He said it in an interview on 60 Minutes or 20/20 or something like that many years ago and it stuck in my head.
Gotta go plan the weekend.
Harry Potter was very good. They really messed with the ending so if you're planning to go see it, don't expect the book. There were at least two major plot revisions and one sizable inconsistancy that I think they did on purpose. We'll see how they resolve it in the last movie.
Merrilee said Charlotte was nigh on perfect and the easiest babysitting gig ever. I'm not surprized.
After the movie, I accidentally (there are no such things as accidents, right?) took the other exit out of the parking garage and found myself needing to turn around to head back to The House. I figured I'd just turn at the next light and head back in that general direction. That's when I saw the COSTCO. I found a COSTCO! And it was beautiful. Bananas, really good bread, Horizon organic chocolate milk, cheese, more cheese! AH! Some people need chocolate, some need drugs and alcohol. COSTCO helps me cope.
There's a carnival today after lunch and I'm thinking there's some mini skeeball in our future.
Charlotte is resting at the moment. Not sleeping but doing her quite, self amusement thing she does sometimes. She didn't want to leave the room today so I honored that. Her appetite sure isn't what it used to be lately. I did at least get her to eat a cup of applesauce. Fluids aren't a problem. The apple juice (thanks Merrillee) and the chocolate milk (thank you, COSTCO! Thank you! Thank you! Thank you!...ahem...sorry) are flowing liberally and the diapers are heavy. No luck potty training but at least she's now letting me brush her teeth every day. Small victories.
I did laundry last night which makes me feel good. Especially the folding part. Very zen. I picked that up from Gregory Hines. Well, not PERSONALLY. He said it in an interview on 60 Minutes or 20/20 or something like that many years ago and it stuck in my head.
Gotta go plan the weekend.
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