I can't figure Charlotte out. She starts to look zombiesque and then turns around and has a great day.
We went to the Home-based Business Bazaar and she didn't seem to do that well. We made the rounds and saw a few friends and RNR members like the Flanagans, Bridget, Evan, Malia, Xavier. We ended up in the nursery where we stayed for a while. There were some very nice things for sale and I know Granny did her share to make it a successful event.
Then we made our exit and I promptly pulled something in my back somewhere between the front door and the end of the sidewalk. I have no idea what I did but it started really bothering me by the time we got to the car.
When we got home, I fed Charlotte lunch and took some Vitamine "I." Granny was merciful and took CJ over the Uncle Kolbey's house so I could get the ice going in best Dr. Anna style, "20 minutes on, 20 minutes off."
While I sat on the couch trying to find a comfortable position, I found myself watching, Farrah's Story. This is not a show to watch if you're emotionally fragile but if you want a real look into the life of a cancer patient, with all the ups and down, the side effects, the hopes, the impact on families, etc...then watch it.
It really ran me down though and I found myself slipping into Seriously Bummedsville a few times. Kinda ruined my day. I told Rachel tonight that it's my every 6-month funk which is actually happening once or twice a month these days.
Rachel went in to teach a class and lead Brithday Bashes today and I went in to help with the first ever Awesome Adventure Party! I was pretty much useless with my back/shoulder so I worked front desk and the regular crew wowed them. It was a pretty successful party from what I saw/heard.
When we got home, Charlotte was already saying she wanted to go to bed so we brought her back home and got her ready. She ended up having a great day, pooping, eating, drinking, and having lots of educational fun with Granny. She was just pooped.
Update:
Some of you have asked me to repeat Deb Harper's contact information. If you haven't seen yet, Deb did a photo shoot with us last week and took some FABULOUS pics of Charlotte (me and Roger too). She is doing a "Pictures for Charlotte" fundraiser where she will take pics of your family (wherever you wish) and give you an edited CD of the prints in exchange for a donation of your choice for Charlotte.
If you are on Facebook, you can take a look at the pics on either mine or Roger's sites. We should have some posted to the Caring Bridge site soon.
Her contact info is: Deb Harper (804) 273-0064
Harper3902@aol.com
Update:
Aunt B and Uncle Not-So-Hairy headed off to the Hawaiian Islands this morning and Reesestrong (the doll) went with them. Can't wait to hear the stories and see the pics.
Extra positive thoughts should go out to the Reilly family as their son, Liam, who we met at the Neslon Clinic, passed away on Monday the 22nd. I say again, cancer really, really sucks!
On a more positive note, Nile, the boy with sickle cell anemia I met in the MRI room, has had a good go of things lately as he got to meet the Super Bowl Champ Steelers and received a bunch of stuff from his favorite team, the Washington Redskins. He even got a call from Santanna Moss (wide receiver). The absolute BEST thing is that he will be receiving his bone marrow transplant next week (I think)!
Here's his CB site: http://www.caringbridge.org/visit/nileprice The Redskins visit (Howiette the Hoggett actually) was caught on film and his expression when he realized what was going on was priceless (no pun intended). It's part of Channel 12 About Town. I've asked Nile to forward a link to the video.
Just got notice that Rachel posted another new update to CJ's journal. Hope you don't mind the multiple posts. Don't forget to read Rachel's last post about Deb Harper's photo shoots!
CJ has had two "walks" around the neighbourhood today and is currently next door with Granny working on some of those cookies. She watched "Mary Poppins" again today and when I asked her if she would like Mary Poppins to visit again and bring her tea set, she said "Yes!"
Everything depends on her numbers but hopefully we can get it planned soon.
Tomorrow is a very long day because we're starting a new drug in the mix and they have to do some extra tests and such. Heard from the Klauers that they will be having a long day of it too. It'll be a Dad's day by the looks of it. The two families are conspiring to open a Tiki Bar at the Nelson Clinic as part of our new "Adult Life" department! :-)
So here's to everyone fighting the good fight past, present, and future. I raise a toast to you all.
Now on to an ice cream party!
Showing posts with label Deb Harper. Show all posts
Showing posts with label Deb Harper. Show all posts
Sunday, June 28, 2009
Friday, June 26, 2009
Low Key Days
A moment to breath between things.
Charlotte is hanging in there. She's definately starting to show signs of chemo side effects. Less energy, dark splotches under the eyes, etc... You wouldn't have known it by looking at the pics Deb took of her last night, though! As soon as they get all uploaded and to us, we'll share a few or you can go to Facebook and see them on my, Rachel's, or Deb Mead Harper's site.
Aunt Phyllis is back home and Granny and Gramps got here safe and sound yesterday.
Next week starts the next level o' crap. CJ finishes Accutane and starts on a new, far more toxic, drug. We have to mix it into applesauce or something but we have to wear double gloves and masks, prepare it in a room far away from food, have no air movement, click our heels three times and say, "Peace in our time" over and over again.
Rachel took CJ into the clinic this morning and it seemed to go well enough. Qdoba and Costco were also on the agenda. They saw her "other boyfriend" Cole at Qdoba which was a nice bonus.
Enjoying it while we can. The sequestering begins soon. Yesterday, she was saying something from the back of the car that I couldn't understand and she wouldn't say it louder even though I asked her three times. Finally I turned off the air and radio and heard her say, "Daddy, I don't like being alone." Where she got that or from where it came, I have no idea but I tried to reassure her several times that someone will always be with her. Could be time to have her sit down with Dr. Matt. Maybe it's the chemo talking. Not sure.
Don't forget the Bazaar tomorrow at St. Anne's Catholic Church in Ashland 10am-2pm.
Enjoy the heat!
Update:
If I were to describe the last few days with Charlotte in two words, I would say "low key". The good news is she seems to be weathering the current chemo regimen fairly well. No nausea, no vomiting, we FINALLY had a poop today (hooray for poop) but she's definitely been more tired and more likely to want to just "chill out". And that's OK!
We had a photo shoot last night with Deb Harper. She's a romp n' roll mom who also takes fabulous pictures. Some posts ago, we announced that she is doing "Pictures for Charlotte" where she will do a photo shoot with your family, edit the pictures, and give them to you on a CD in exchange for a donation in Charlotte's name. She has already booked 16 families (!!!) and last night it was our turn to mug for the camera. She has posted some of the pics on Facebook (they are awesome!!).
On a photography note, a Star Wars enthusiast group called the 501st Legion is going to be taking pictures (in costume, of course) at the next Rompy's Summer Concert Series. For a suggested donation of $5, you can get your picture taken with Darth Vader, storm troopers, or a whole host of characters from the Star Wars Brigade. Big thanks to Jim Woods, RMC soccer coach and RNR customer, for organizing this on Charlotte's behalf.
On a more clinical note:
Yesterday's and today's clinic visits both went pretty well. It was a busy day in the fishbowl but they still got us out of there by 11. We saw Reese and her mom the last two days. Sherry and I got to commisserate (sp?) a bit about the draining treatment regimens. Draining on our kids as well as us. We are advocating for some "adult life" services in addition to the fabulous child life services available at the hospital. I mean, why can't we get a little Tiki Bar put in the clinic? While our kids are getting their infusions, we can get ours...
But I digress...
After the hospital, we went to Qdoba for lunch and had a very chance meeting with Charlotte's friend Cole. He goes to Charlotte's preschool and they just happened to be getting lunch at the same time. They seemed to have a good time seeing one another and talking a bit. From there, it was a few more errands and now we are home. I'm quite exhausted and need a nap (or more caffeine?) and Charlotte seems to be keeping herself busy.
We found out that the Accutane will stop tonight. No chemo over the weekend and then on Monday she will need to go in for blood draws and THEN (assuming her counts are good) she will get the two meds (one oral and one IV) so it could be a L-O-N-G clinic day on Monday. At least they warned us this time.
Roger is working a MARATHON day at RNR with 4 classes in the AM, a birthday party, and THEN Kid's Night Out till 8:30. What a blast! I'm sure he will come home tired. My turn for the marathon day tomorrow.
Big reminder about the Home Based Business Bazaar at St. Ann's church from 10 AM-2 PM tomorrow. Big thanks to Jackie Plank for organizing this and all the vendors for putting it together. This is a great time to start your Christmas shopping or find the perfect birthday gifts for everyone on your list.
Gotta go seek out some mid-afternoon caffeine.
Update:
Ok, so if you didn't notice, Roger and I posted separate but similar journal entries only minutes apart. Yes, our strange synchronized brains work like that somehow...enjoy the weekend!
Rachel
Charlotte is hanging in there. She's definately starting to show signs of chemo side effects. Less energy, dark splotches under the eyes, etc... You wouldn't have known it by looking at the pics Deb took of her last night, though! As soon as they get all uploaded and to us, we'll share a few or you can go to Facebook and see them on my, Rachel's, or Deb Mead Harper's site.
Aunt Phyllis is back home and Granny and Gramps got here safe and sound yesterday.
Next week starts the next level o' crap. CJ finishes Accutane and starts on a new, far more toxic, drug. We have to mix it into applesauce or something but we have to wear double gloves and masks, prepare it in a room far away from food, have no air movement, click our heels three times and say, "Peace in our time" over and over again.
Rachel took CJ into the clinic this morning and it seemed to go well enough. Qdoba and Costco were also on the agenda. They saw her "other boyfriend" Cole at Qdoba which was a nice bonus.
Enjoying it while we can. The sequestering begins soon. Yesterday, she was saying something from the back of the car that I couldn't understand and she wouldn't say it louder even though I asked her three times. Finally I turned off the air and radio and heard her say, "Daddy, I don't like being alone." Where she got that or from where it came, I have no idea but I tried to reassure her several times that someone will always be with her. Could be time to have her sit down with Dr. Matt. Maybe it's the chemo talking. Not sure.
Don't forget the Bazaar tomorrow at St. Anne's Catholic Church in Ashland 10am-2pm.
Enjoy the heat!
Update:
If I were to describe the last few days with Charlotte in two words, I would say "low key". The good news is she seems to be weathering the current chemo regimen fairly well. No nausea, no vomiting, we FINALLY had a poop today (hooray for poop) but she's definitely been more tired and more likely to want to just "chill out". And that's OK!
We had a photo shoot last night with Deb Harper. She's a romp n' roll mom who also takes fabulous pictures. Some posts ago, we announced that she is doing "Pictures for Charlotte" where she will do a photo shoot with your family, edit the pictures, and give them to you on a CD in exchange for a donation in Charlotte's name. She has already booked 16 families (!!!) and last night it was our turn to mug for the camera. She has posted some of the pics on Facebook (they are awesome!!).
On a photography note, a Star Wars enthusiast group called the 501st Legion is going to be taking pictures (in costume, of course) at the next Rompy's Summer Concert Series. For a suggested donation of $5, you can get your picture taken with Darth Vader, storm troopers, or a whole host of characters from the Star Wars Brigade. Big thanks to Jim Woods, RMC soccer coach and RNR customer, for organizing this on Charlotte's behalf.
On a more clinical note:
Yesterday's and today's clinic visits both went pretty well. It was a busy day in the fishbowl but they still got us out of there by 11. We saw Reese and her mom the last two days. Sherry and I got to commisserate (sp?) a bit about the draining treatment regimens. Draining on our kids as well as us. We are advocating for some "adult life" services in addition to the fabulous child life services available at the hospital. I mean, why can't we get a little Tiki Bar put in the clinic? While our kids are getting their infusions, we can get ours...
But I digress...
After the hospital, we went to Qdoba for lunch and had a very chance meeting with Charlotte's friend Cole. He goes to Charlotte's preschool and they just happened to be getting lunch at the same time. They seemed to have a good time seeing one another and talking a bit. From there, it was a few more errands and now we are home. I'm quite exhausted and need a nap (or more caffeine?) and Charlotte seems to be keeping herself busy.
We found out that the Accutane will stop tonight. No chemo over the weekend and then on Monday she will need to go in for blood draws and THEN (assuming her counts are good) she will get the two meds (one oral and one IV) so it could be a L-O-N-G clinic day on Monday. At least they warned us this time.
Roger is working a MARATHON day at RNR with 4 classes in the AM, a birthday party, and THEN Kid's Night Out till 8:30. What a blast! I'm sure he will come home tired. My turn for the marathon day tomorrow.
Big reminder about the Home Based Business Bazaar at St. Ann's church from 10 AM-2 PM tomorrow. Big thanks to Jackie Plank for organizing this and all the vendors for putting it together. This is a great time to start your Christmas shopping or find the perfect birthday gifts for everyone on your list.
Gotta go seek out some mid-afternoon caffeine.
Update:
Ok, so if you didn't notice, Roger and I posted separate but similar journal entries only minutes apart. Yes, our strange synchronized brains work like that somehow...enjoy the weekend!
Rachel
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