Crap...crap...crappity crap crap...
We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.
She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.
No word yet as to how long we'll be in this time. We'll let you know.
In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.
Gotta run and get ready for Romp n' roll.
Rachel
Big wheels keep on turnin'....
Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!
Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE
If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.
About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.
On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at rreynolds@rompnroll.com
I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...
Rachel
So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.
Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.
She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.
We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.
She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.
Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.
Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.
On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.
She has eaten a good bit, slept a little and is now in a very good mood. That's good.
Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:
http://www.youtube.com/watch?v=wsLqKAvKiQM
Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.
Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.
So off I go to entertain the princess.
Showing posts with label catheter. Show all posts
Showing posts with label catheter. Show all posts
Thursday, April 16, 2009
Tuesday, April 7, 2009
An Overall Update
Not much to report. I am hoping no news is good news. If all is going well, Charlotte is on her way to surgery to repair the central line.
An update on the insurance front: Humana sent me a form letter stating they had received our notice of appeal. This is what the State Insurance Commission (the Ombudsman) sent to Humana on our behalf. So the good news is that they have receieved our initial complaint and have responded. I spoke with the Ombudsman yesterday (don't you just LOVE that word???) and he is helping me draft an additional response. We also have a letter from her neurosurgeon and I am in the process of getting one from Dr. Khan. He has been "out" this week so that is taking some work. The insurance commission has great experience with these situations and have been wonderfully patient throughout this process. It's amazing how responsive insurance companies get when they are involved!!
A big thank you to (Virginia) Senator Ryan McDougle's office as well. They have been following Charlotte's story thanks to a letter sent by my mom on our behalf and have also contacted Humana on our behalf. Hopefully because of all this "response" Humana will have no choice but to act in Charlotte's best interest.
In national news, I received form letters from Senator Warner and Rep. Cantor's offices. Our good friends Lee and Susan Chambers actually received a PERSONAL response from Senator Warner's office regarding our situation but I haven't heard the result of that yet.
I truly believe in the power of our government to work for the people. We live in such a diverse nation and it is so difficult to make a system that works for everyone, but it is amazing to me how responsive our leaders CAN be when given the opportunity. In the words of Forrest Gump, "That's just about all I have to say about that..."
Signing off,
Rachel
Now we have LOTS of news...
The central line surgery went well although it took much longer than expected and they gave Granny the royal run-around because a "parent was not present" (sorry folks...mom and dad have to do something to make a living). They were VERY aware that we would not be there and I had consented to everything ahead of time, but in true hospital fashion, one hand doesn't always seem to know what the other is doing.
Her central line is now in and installed in a new place (in the center of her chest) which we hope will be a better placement. She has been eating all afternoon and seems to be in a good mood. At the moment she is in Caillou Land. She's been quite the couch potato today but that's ok. I guess we'll go for a walk later.
As of 3 PM this afternoon, we have started Day A of her chemo since her methotrexate level has dropped so with fingers crossed and hopeful hearts we are aiming for a discharge from the hospital late Thursday or early Friday. Hooray!
My car is now fixed and my stepdad gave me a (very early) birthday present by paying for the repairs (THANKS!). My inspection was due this month too and all seems to be in order so hopefully no more car problems for a while.
I also faxed our insurance grievance off to the Insurance Commission along with Dr. Tye's support letter. We shall see what happens....
That's all of our news for now, I guess.
Rachel
A Final Update:
Just feeling the urge to write today so I hope folks will understand the multiple updates they are getting in their inbox in the last 24 hours... and pardon what will probably be a bit of a rant/vent on my part but this is my forum...
Charlotte is resting right now. They forgot to bring her dinner (again) but it doesn't seem to matter as she was very happy with popcorn, milkshake, and popsicles. She is looking very gray today (the gray hoodie dress that has currently become her favorite article of clothing probably doesn't help). The dark circles seem to grow by the hour under her eyes and it just breaks my heart. We had to change her dressing where the new line was inserted. It had bled a little and nurse Lauren felt it looked "yucky" (I concurred) and we worried about the possibility of infection. So Charlotte endured one of her least favorite things: the dressing change.
You know, everyone on Facebook lately is listing their "top 5's" (beers, tv shows, movies, celebrity crushes).
Here are Charlotte's Top 5 Crappy Things to Happen to Me:
0. Inserting a Catheter
1. Any kind of needle prick or shot or IV insertion
2. Having my Dressing Changed
3. Taking Docusate (or any other oral medication)
4. Having a doctor or nurse interrupt my TV shows to talk to me or do something to me
I think that about covers it. And here is the saddest part: these things have become a part of her REGULAR life. They are so regular, they are routine to Charlotte, her parents, and others who work with her on a daily basis. They are so routine that my 3 (going on 13) year old daughter is learning medical terms daily. Not just the word itself, but she knows what they MEAN. Man, it sucks.
She should be spending her days playing at school, taking classes at Romp n' Roll, running around the yard, picking out her Easter dress, learning to play soccer....NOT THIS CRAP!!!
Everyone keeps saying, "I don't know how you do it." and I agree. I have no idea. I just go one day at a time. I put one foot in front of the other. I force myself to get out of bed in the morning. Sometimes I cry myself to sleep. Sometimes I cry sitting at traffic lights for no apparent reason. I force myself to go to work, to pay the bills, to make another to-do list, to check off items on my to-do list. Why? What other choice do I have? I can't let my life implode. I can't give up. I have to keep going for Charlotte's sake. And so I do...
And yet, there are days and moments when I am genuinely, truly happy. There are moments when I laugh, smile, find comfort, and experience joy. They seem fewer and far-er between these days. They are also often tinged with that bittersweet taste of a Sadness That Will Not Go Away.
The problem is, how do you react to the words, "How are you doing?" Compared to what? Compared to 5 minutes ago? Last week? Last year? My "new normal" changes so frequently that I'm getting ready to ban the word from my vocabulary.
I try to look on the bright side. And I see it. I see that 6 months from now, we should be free from treatments. We will hopefully be cancer free and into what will become the new routine of less and less frequent doctor visits. I look forward to the day when Charlotte will no longer be a Cancer Patient but a Cancer Survivor. But that bright light is SO far away right now. I can't even plan events in my life a month from now without a "well, we will see" or "perhaps". Because who knows how long the next round of chemo will take? Or when we will end up unexpectedly in the hospital because her blood counts bottom out?
But right now it hurts. My heart hurts. It aches for Charlotte, for Roger, for me. For everyone in our family and our circle of friends who have been touched...no...dope-slapped upside the head...by this crisis. It hurts for all of Charlotte's peers. Her friends and her playmates who ask daily, "When will Charlotte be better?" Not understanding why a kid their own age isn't well when "sick" usually means 3 or 4 days in bed at home.
I am never one to sensationalize tragedy. Yes, I have my dramatic side but on the whole, I work to minimize drama when it comes to stuff like this. The "person-first language" person in me says that she is NOT a victim. She is NOT suffering from Cancer. We are not "those people" that you see on the TV news (or from whose stories they make Lifetime movies). And yet here we are.
How did we get here? Unless you've been here (and some of you, my dear readers, have been here. Or you are HERE RIGHT NOW. Having your own tragic experience. And for that I am both enormously sorry and simultaneously enormously grateful for the empathy, advice, and comfort which you have poured in my general direction). BUT unless you've been here, it is virtually impossible to describe. My life had been touched by sadness and tragedy before. I had definitely felt pain in my three decades on this planet. But this one takes the cake. It's almost indescribable.
Yes, for everything there is a reason. For everything there is a purpose under Heaven. That which has come before has prepared me to be the person I am today: to face this crisis...this SITUATION as best I can. And someday....years from now...I will look back and say THIS was the reason why Charlotte had Cancer. Sometimes that is still not comforting.
So I think my time to vent is up. I must rest, must do payroll, must end this post before it becomes the NEVER ENDING STORY.
Thanks for listening. Thanks for letting me vent. Thanks for smiling at me every day and asking about my daughter. Thanks for planning fundraisers and parties in her honor. Thanks for gifts of toys, time, money, Starbucks Cards, handmade angels, and understanding. Thanks for bringing your kids to play at Romp n' Roll (bring more! :-)) Thanks for making connections that get us in touch with the Insurance Commissioner. Thanks for praying, for sending positive vibes, for sharing our story. Thanks for crying. Thanks for making me laugh. Thanks for cleaning my house, doing my laundry, cooking meals, feeding the cats. Thanks for organizing my pantry, raking the leaves, planting new plants. Thanks for stepping in to plan conferences and take over school contracts. Thanks for Easter baskets and homemade cookies. Thanks for all the things I haven't the energy to say thank you for. Thanks for tolerating my horrible grammar in this post.
Tout Finis!
An update on the insurance front: Humana sent me a form letter stating they had received our notice of appeal. This is what the State Insurance Commission (the Ombudsman) sent to Humana on our behalf. So the good news is that they have receieved our initial complaint and have responded. I spoke with the Ombudsman yesterday (don't you just LOVE that word???) and he is helping me draft an additional response. We also have a letter from her neurosurgeon and I am in the process of getting one from Dr. Khan. He has been "out" this week so that is taking some work. The insurance commission has great experience with these situations and have been wonderfully patient throughout this process. It's amazing how responsive insurance companies get when they are involved!!
A big thank you to (Virginia) Senator Ryan McDougle's office as well. They have been following Charlotte's story thanks to a letter sent by my mom on our behalf and have also contacted Humana on our behalf. Hopefully because of all this "response" Humana will have no choice but to act in Charlotte's best interest.
In national news, I received form letters from Senator Warner and Rep. Cantor's offices. Our good friends Lee and Susan Chambers actually received a PERSONAL response from Senator Warner's office regarding our situation but I haven't heard the result of that yet.
I truly believe in the power of our government to work for the people. We live in such a diverse nation and it is so difficult to make a system that works for everyone, but it is amazing to me how responsive our leaders CAN be when given the opportunity. In the words of Forrest Gump, "That's just about all I have to say about that..."
Signing off,
Rachel
Now we have LOTS of news...
The central line surgery went well although it took much longer than expected and they gave Granny the royal run-around because a "parent was not present" (sorry folks...mom and dad have to do something to make a living). They were VERY aware that we would not be there and I had consented to everything ahead of time, but in true hospital fashion, one hand doesn't always seem to know what the other is doing.
Her central line is now in and installed in a new place (in the center of her chest) which we hope will be a better placement. She has been eating all afternoon and seems to be in a good mood. At the moment she is in Caillou Land. She's been quite the couch potato today but that's ok. I guess we'll go for a walk later.
As of 3 PM this afternoon, we have started Day A of her chemo since her methotrexate level has dropped so with fingers crossed and hopeful hearts we are aiming for a discharge from the hospital late Thursday or early Friday. Hooray!
My car is now fixed and my stepdad gave me a (very early) birthday present by paying for the repairs (THANKS!). My inspection was due this month too and all seems to be in order so hopefully no more car problems for a while.
I also faxed our insurance grievance off to the Insurance Commission along with Dr. Tye's support letter. We shall see what happens....
That's all of our news for now, I guess.
Rachel
A Final Update:
Just feeling the urge to write today so I hope folks will understand the multiple updates they are getting in their inbox in the last 24 hours... and pardon what will probably be a bit of a rant/vent on my part but this is my forum...
Charlotte is resting right now. They forgot to bring her dinner (again) but it doesn't seem to matter as she was very happy with popcorn, milkshake, and popsicles. She is looking very gray today (the gray hoodie dress that has currently become her favorite article of clothing probably doesn't help). The dark circles seem to grow by the hour under her eyes and it just breaks my heart. We had to change her dressing where the new line was inserted. It had bled a little and nurse Lauren felt it looked "yucky" (I concurred) and we worried about the possibility of infection. So Charlotte endured one of her least favorite things: the dressing change.
You know, everyone on Facebook lately is listing their "top 5's" (beers, tv shows, movies, celebrity crushes).
Here are Charlotte's Top 5 Crappy Things to Happen to Me:
0. Inserting a Catheter
1. Any kind of needle prick or shot or IV insertion
2. Having my Dressing Changed
3. Taking Docusate (or any other oral medication)
4. Having a doctor or nurse interrupt my TV shows to talk to me or do something to me
I think that about covers it. And here is the saddest part: these things have become a part of her REGULAR life. They are so regular, they are routine to Charlotte, her parents, and others who work with her on a daily basis. They are so routine that my 3 (going on 13) year old daughter is learning medical terms daily. Not just the word itself, but she knows what they MEAN. Man, it sucks.
She should be spending her days playing at school, taking classes at Romp n' Roll, running around the yard, picking out her Easter dress, learning to play soccer....NOT THIS CRAP!!!
Everyone keeps saying, "I don't know how you do it." and I agree. I have no idea. I just go one day at a time. I put one foot in front of the other. I force myself to get out of bed in the morning. Sometimes I cry myself to sleep. Sometimes I cry sitting at traffic lights for no apparent reason. I force myself to go to work, to pay the bills, to make another to-do list, to check off items on my to-do list. Why? What other choice do I have? I can't let my life implode. I can't give up. I have to keep going for Charlotte's sake. And so I do...
And yet, there are days and moments when I am genuinely, truly happy. There are moments when I laugh, smile, find comfort, and experience joy. They seem fewer and far-er between these days. They are also often tinged with that bittersweet taste of a Sadness That Will Not Go Away.
The problem is, how do you react to the words, "How are you doing?" Compared to what? Compared to 5 minutes ago? Last week? Last year? My "new normal" changes so frequently that I'm getting ready to ban the word from my vocabulary.
I try to look on the bright side. And I see it. I see that 6 months from now, we should be free from treatments. We will hopefully be cancer free and into what will become the new routine of less and less frequent doctor visits. I look forward to the day when Charlotte will no longer be a Cancer Patient but a Cancer Survivor. But that bright light is SO far away right now. I can't even plan events in my life a month from now without a "well, we will see" or "perhaps". Because who knows how long the next round of chemo will take? Or when we will end up unexpectedly in the hospital because her blood counts bottom out?
But right now it hurts. My heart hurts. It aches for Charlotte, for Roger, for me. For everyone in our family and our circle of friends who have been touched...no...dope-slapped upside the head...by this crisis. It hurts for all of Charlotte's peers. Her friends and her playmates who ask daily, "When will Charlotte be better?" Not understanding why a kid their own age isn't well when "sick" usually means 3 or 4 days in bed at home.
I am never one to sensationalize tragedy. Yes, I have my dramatic side but on the whole, I work to minimize drama when it comes to stuff like this. The "person-first language" person in me says that she is NOT a victim. She is NOT suffering from Cancer. We are not "those people" that you see on the TV news (or from whose stories they make Lifetime movies). And yet here we are.
How did we get here? Unless you've been here (and some of you, my dear readers, have been here. Or you are HERE RIGHT NOW. Having your own tragic experience. And for that I am both enormously sorry and simultaneously enormously grateful for the empathy, advice, and comfort which you have poured in my general direction). BUT unless you've been here, it is virtually impossible to describe. My life had been touched by sadness and tragedy before. I had definitely felt pain in my three decades on this planet. But this one takes the cake. It's almost indescribable.
Yes, for everything there is a reason. For everything there is a purpose under Heaven. That which has come before has prepared me to be the person I am today: to face this crisis...this SITUATION as best I can. And someday....years from now...I will look back and say THIS was the reason why Charlotte had Cancer. Sometimes that is still not comforting.
So I think my time to vent is up. I must rest, must do payroll, must end this post before it becomes the NEVER ENDING STORY.
Thanks for listening. Thanks for letting me vent. Thanks for smiling at me every day and asking about my daughter. Thanks for planning fundraisers and parties in her honor. Thanks for gifts of toys, time, money, Starbucks Cards, handmade angels, and understanding. Thanks for bringing your kids to play at Romp n' Roll (bring more! :-)) Thanks for making connections that get us in touch with the Insurance Commissioner. Thanks for praying, for sending positive vibes, for sharing our story. Thanks for crying. Thanks for making me laugh. Thanks for cleaning my house, doing my laundry, cooking meals, feeding the cats. Thanks for organizing my pantry, raking the leaves, planting new plants. Thanks for stepping in to plan conferences and take over school contracts. Thanks for Easter baskets and homemade cookies. Thanks for all the things I haven't the energy to say thank you for. Thanks for tolerating my horrible grammar in this post.
Tout Finis!
Saturday, April 4, 2009
A Lot of "Hurry Up and Wait"
Charlotte had a pretty good day yesterday. In typical hospital fashion, it was a lot of "hurry up and wait". We got to the clinic early and got that "nasty catheter" removed. She immediately seemed to feel better. After some lab draws it was off to radiology. She again went easily into the MRI. It was kind of weird for me this time as it was the first time she had an MRI when she was not admitted to the hospital. We were taken to the heart catheterization recovery area which is where they bring everyone who is coming out of anesthesia, etc. from procedures. Anyway, the nurse said the she did very well and sang Frosty the Snowman as she went to sleep. Some of the nurses mentioned that kids frequently wake up grumpy after anesthesia but another nurse said, "No, when they go to sleep easily and peacefully, they wake up peacefully. And Charlotte went down peacefully". Sure enough, when she finally DID wake up (it took a while) she awoke with a smile on her face.
Dr. Tye and Joanne came down almost immediately to read her scan and as Roger mentioned, it did look good. Not a lot of shrinkage but no growth either so that is good. Dr. Khan looked at it later and concurred.
While Charlotte rested, I went down to Christopher's Cart and got chicken and tuna salad lunches for me and mom. If you've never checked out Christopher's while at MCV, you are missing out. Relatively healthy, very yummy, and affordable. And it sure beats the crowds in the cafeteria. Highly recommend.
After Charlotte woke up, it was back to the clinic to wait for a bed on the 7th floor. It took a while, apparently because Peds was very busy yesterday. Charlotte even ended up on 7 Central (the "big kids" area) instead of 7 East because of the crowd. So we have a new set of nurses to get to know but many of the faces are still the same. Had to go through all the requisite processes of getting settled (forms, getting water/juice/etc., finding a remote control that works for the TV...all the fun stuff!). They FINALLY started her on IV fluids about 6:30 PM (apparently they had trouble locating a free IV pump and cart) and I left the hospital around 7 PM. She was excited about her slumber party with granny. Chemo should have officially started sometime after midnight.
She really was in quite the good mood yesterday. Everywhere we went, people smiled and waved at her and she almost always waved back and even engaged many folks in conversation. I think maybe she wrote the book on "How to Win Friends and Influence People". She has never met a stranger and can charm the socks off anyone!
Roger and I got a date at Casa Grande last night. First time I had been in there in a long time where I had to wait for a table. That place was hoppin'! Now it's off to a full day at Romp n' Roll and my turn at the hospital this evening.
Hope everyone enjoys their spring weekend.
Update from Rachel:
A full day of work for Roger and Rachel and a full day of fun (mostly) for Charlotte. According to Granny, she slept well and has received the methotrexate. Plus all the regular meds for keeping the poop moving, keeping the nausea at bay, etc. Her day has been spent with lots of her regular activities including walks through the halls, visits with nurses who took care of her on other units, and videos and coloring. She was very happy to see mommy and daddy and I think Granny was ready to go home to her bed and a nice dinner (thanks again, Granny!!!).
Now we are getting a little family time before it's mommy's turn to take the night shift. Not much news to report. We are definitely feeling "at home" here at MCV and that is probably not such a good thing...except that it makes the whole experience a little bit easier, I guess.
Hope everyone is enjoying this glorious weekend. We certainly saw lots of yard sales and other events going on today!
Rachel
Final Update:
She's finally asleep. She was rather whiny all evening but had one good walk around the unit. We found out that her sugar was slightly elevated which may have contributed a bit to her jittery/agitated behavior. I guess they will adjust that through her IV bag (i.e. the amount of sugar in the fluids). [Actually, as I'm typing this, nurse Katie just came in to say that her sugar is down again but still not "normal" so they are going to give her a bag with 1/2 the sugar content...]
Any oral meds take so much prompting and prodding and bribing. It's exhausting. Even chocolate is not a surefire bribe these days. Then when we tried to bribe her with one of her favorites (Tylenol meltaways) we found out that we had to get the little bottle of tylenol and all its contents approved by the doctor and they have to keep it at the nurse's station. Just a CYA move on the hospital's part because insane people often bring other (unapproved) meds in medicine bottles and then try to give them to their kids. We did finally get the Senna into her chased with a tylenol meltaway and chocolate milk. Then more drama when they had to put the bag over her "area" to catch urine for a sample. Of course, there was the "it's a catheter" terror despite our protests that it was just a bag with NO needles and NO catheter.
This, to me, is the saddest part of this process. My child who until this point took all kinds of medicine with no question and never feared ANYTHING (possibly to a fault) is now fearful of every procedure being done to her and wants full explanations of what, when, where, and why everything will happen. And even with that there is still fear. It is so sad because this disease (and the process of curing it) has changed my child and as many of you know, any kind of change is a grieved loss...it breaks my heart.
In the past 24 hours, she has developed more dark circles under her eyes. More and more she looks like "the kid who has cancer". She's still cute as ever. Don't get me wrong. Hands down she's the most beautiful kid on the 7th floor tonight and she could still win beauty contests anywhere she goes with that winning smile and personality. But it is still sad.
Roger was more than frustrated today with many things (namely ME). I'm sure he will give his own recount of the day's events including his forays into the world of the Confederacy but I'll use this forum to give my own public apology for making life difficult (I'm trying....) and hope he has a better day tomorrow. At least he gets to work a birthday party for one of our favorite families (the Cadienas!)
Well, while she sleeps I need to try and rest...my mom was right. This unit is much noisier than 7 East. Not really sure why but sound just seems to carry differently and I think they use the intercom more. Hopefully it won't be too bad tonight.
Rachel
•
Dr. Tye and Joanne came down almost immediately to read her scan and as Roger mentioned, it did look good. Not a lot of shrinkage but no growth either so that is good. Dr. Khan looked at it later and concurred.
While Charlotte rested, I went down to Christopher's Cart and got chicken and tuna salad lunches for me and mom. If you've never checked out Christopher's while at MCV, you are missing out. Relatively healthy, very yummy, and affordable. And it sure beats the crowds in the cafeteria. Highly recommend.
After Charlotte woke up, it was back to the clinic to wait for a bed on the 7th floor. It took a while, apparently because Peds was very busy yesterday. Charlotte even ended up on 7 Central (the "big kids" area) instead of 7 East because of the crowd. So we have a new set of nurses to get to know but many of the faces are still the same. Had to go through all the requisite processes of getting settled (forms, getting water/juice/etc., finding a remote control that works for the TV...all the fun stuff!). They FINALLY started her on IV fluids about 6:30 PM (apparently they had trouble locating a free IV pump and cart) and I left the hospital around 7 PM. She was excited about her slumber party with granny. Chemo should have officially started sometime after midnight.
She really was in quite the good mood yesterday. Everywhere we went, people smiled and waved at her and she almost always waved back and even engaged many folks in conversation. I think maybe she wrote the book on "How to Win Friends and Influence People". She has never met a stranger and can charm the socks off anyone!
Roger and I got a date at Casa Grande last night. First time I had been in there in a long time where I had to wait for a table. That place was hoppin'! Now it's off to a full day at Romp n' Roll and my turn at the hospital this evening.
Hope everyone enjoys their spring weekend.
Update from Rachel:
A full day of work for Roger and Rachel and a full day of fun (mostly) for Charlotte. According to Granny, she slept well and has received the methotrexate. Plus all the regular meds for keeping the poop moving, keeping the nausea at bay, etc. Her day has been spent with lots of her regular activities including walks through the halls, visits with nurses who took care of her on other units, and videos and coloring. She was very happy to see mommy and daddy and I think Granny was ready to go home to her bed and a nice dinner (thanks again, Granny!!!).
Now we are getting a little family time before it's mommy's turn to take the night shift. Not much news to report. We are definitely feeling "at home" here at MCV and that is probably not such a good thing...except that it makes the whole experience a little bit easier, I guess.
Hope everyone is enjoying this glorious weekend. We certainly saw lots of yard sales and other events going on today!
Rachel
Final Update:
She's finally asleep. She was rather whiny all evening but had one good walk around the unit. We found out that her sugar was slightly elevated which may have contributed a bit to her jittery/agitated behavior. I guess they will adjust that through her IV bag (i.e. the amount of sugar in the fluids). [Actually, as I'm typing this, nurse Katie just came in to say that her sugar is down again but still not "normal" so they are going to give her a bag with 1/2 the sugar content...]
Any oral meds take so much prompting and prodding and bribing. It's exhausting. Even chocolate is not a surefire bribe these days. Then when we tried to bribe her with one of her favorites (Tylenol meltaways) we found out that we had to get the little bottle of tylenol and all its contents approved by the doctor and they have to keep it at the nurse's station. Just a CYA move on the hospital's part because insane people often bring other (unapproved) meds in medicine bottles and then try to give them to their kids. We did finally get the Senna into her chased with a tylenol meltaway and chocolate milk. Then more drama when they had to put the bag over her "area" to catch urine for a sample. Of course, there was the "it's a catheter" terror despite our protests that it was just a bag with NO needles and NO catheter.
This, to me, is the saddest part of this process. My child who until this point took all kinds of medicine with no question and never feared ANYTHING (possibly to a fault) is now fearful of every procedure being done to her and wants full explanations of what, when, where, and why everything will happen. And even with that there is still fear. It is so sad because this disease (and the process of curing it) has changed my child and as many of you know, any kind of change is a grieved loss...it breaks my heart.
In the past 24 hours, she has developed more dark circles under her eyes. More and more she looks like "the kid who has cancer". She's still cute as ever. Don't get me wrong. Hands down she's the most beautiful kid on the 7th floor tonight and she could still win beauty contests anywhere she goes with that winning smile and personality. But it is still sad.
Roger was more than frustrated today with many things (namely ME). I'm sure he will give his own recount of the day's events including his forays into the world of the Confederacy but I'll use this forum to give my own public apology for making life difficult (I'm trying....) and hope he has a better day tomorrow. At least he gets to work a birthday party for one of our favorite families (the Cadienas!)
Well, while she sleeps I need to try and rest...my mom was right. This unit is much noisier than 7 East. Not really sure why but sound just seems to carry differently and I think they use the intercom more. Hopefully it won't be too bad tonight.
Rachel
•
Friday, April 3, 2009
Catheter removed, MRI Showed no Growth, & Charlotte Sleeping Peacefully
How about West Xylophone?
CJ had the catheter removed this morning, an MRI which showed no growth (YAY!), and at last message from Rachel was sleeping peacefully.
She was extremely clingy this morning and I just sat on the couch with her for about a half hour while mommy got things packed and ready. She pretty much knew what was happening and didn't want to let go. I talked to her and told her that nasty catheter was coming out and they were going to take a picture of her brain and all of that was good and relatively painless. She seemed reassured. She asked me where I was going to be and I told her at Romp n' Roll and she seemed ok with it. I sang to her a little and then put her in the car with Mommy and Granny. I have a much better feeling about things now than I did a day or so ago.
Some dads from the Yahoo Dads group are here at Romp n' Roll playing around and we'll just keep it going for the rest of the day so there's lots of fun to be had.
Rachel didn't take the laptop so I'm the point person for CB updates. Granny will be staying at the hospital tonight. Mommy and Daddy are going to just stay home, drink wine, and maybe get some rest.
Major cool event during babies class today: got to see Isabelle crawl! She just started this week. We were all very excited. We also welcomed yet another set of twins (girls: Ashley and Amber) to Babies!
Also wonderful to see Megan Blake, Katie, and Katie's Grandma at Tumble Tunes this morning. Everyone seems to be doing a little better. LOVED the scarf and they gave CJ a t-shirt that reads, "Bald Chicks Rock!" Megan has a matching one, I hear. Thanks Grandma (she made them).
Gonna scrounge up lunch.
Come in and play!
Rog
CJ had the catheter removed this morning, an MRI which showed no growth (YAY!), and at last message from Rachel was sleeping peacefully.
She was extremely clingy this morning and I just sat on the couch with her for about a half hour while mommy got things packed and ready. She pretty much knew what was happening and didn't want to let go. I talked to her and told her that nasty catheter was coming out and they were going to take a picture of her brain and all of that was good and relatively painless. She seemed reassured. She asked me where I was going to be and I told her at Romp n' Roll and she seemed ok with it. I sang to her a little and then put her in the car with Mommy and Granny. I have a much better feeling about things now than I did a day or so ago.
Some dads from the Yahoo Dads group are here at Romp n' Roll playing around and we'll just keep it going for the rest of the day so there's lots of fun to be had.
Rachel didn't take the laptop so I'm the point person for CB updates. Granny will be staying at the hospital tonight. Mommy and Daddy are going to just stay home, drink wine, and maybe get some rest.
Major cool event during babies class today: got to see Isabelle crawl! She just started this week. We were all very excited. We also welcomed yet another set of twins (girls: Ashley and Amber) to Babies!
Also wonderful to see Megan Blake, Katie, and Katie's Grandma at Tumble Tunes this morning. Everyone seems to be doing a little better. LOVED the scarf and they gave CJ a t-shirt that reads, "Bald Chicks Rock!" Megan has a matching one, I hear. Thanks Grandma (she made them).
Gonna scrounge up lunch.
Come in and play!
Rog
Thursday, April 2, 2009
Another Great Day for Charlotte. She is Amazing!
I am changing the time zone to "Hawaii Time". Maybe that's wishful thinking...
Another great day for Charlotte. She is amazing!
Yesterday, I came home from Costco with three Nandina plants that John had helped me pick out for the front yard. Charlotte greeted us at the care and proceeded to ask all kinds of questions about what we were doing. She said, "How many plants did you buy?" and I said, "Well, you tell me." So she responded, "You bought the number of plants that match my age." WOW! Pretty higher level thinking from that kid!
For those of you wondering about further plans with the Head Shaving Party, the current schedule is that the party will be Friday, April 10th from 3-8 PM at Romp n' Roll (Virginia Center) with lots of play time for the kids. We will probably do the actual head shaving/decorating at about 6 PM to allow for folks to get off of work, etc.
Bob Flanagan and some other folks from the Ashland Jaycees have stepped up to take the reins for this current project. If you would like to coordinate efforts with him, please contact him at bob@dewre.com
I can't think of anything else to say tonight. LOST was great until it started tugging on those "mommy" heart strings. Damn that show!!!! I'm going to try to be brave and watch the series finale of ER tomorrow but I know it will be one big bawl-fest.
Time for night-nights. Early day at the clinic tomorrow.
Rachel
Update:
The girls are off to see Dr. Kahn.
Urgh.
Earlier, I had been trying to talk to Charlotte about what to expect and all that but this time, I just couldn't bring myself to ruin that great mood she's been in all week. When I tried to bring it up last night that she had to go back in and see Dr. Kahn about the "headache in her head" her face visibly darkened and she said, very matter of factly, "My headache's all gone now." Feel kind of sneaky not warning her better about today.
Gotta love that parental guilt.
Gotta go do Romp n' Roll To Go at Primrose. Thanks to Karen Giles for helping out this weekend with the Spring Fling. Did I mention that Primrose is using the event as a partial fundraiser for A.S.K. in Charlotte's name?
Thanks guys.
p.s. Where is Rarotonga?
Update, Today was Kind of Rough:
And now we begin the slow descent...
Today was kind of rough. She went in first thing for the catheter. She knew it was coming so despite getting to watch Strawberry Shortcake on DVD, having all her favorite loveys close by and mom's hand to hold, the whole experience was rather traumatic. Chocolate milkshake after it was finished made it a little better, I think.
We got home around lunch time to find John and Kolbey cleaning the house top to bottom! Excellent!
She spent most of the day on the grumpy, clingy, whiny side. She knows that she is going back into the hospital tomorrow and she is not very happy about it.
Meanwhile we are mostly packed and ready to go. Kind of getting this routine down to a science with what we need, etc. We will go straight to the clinic in the morning for blood draws (labs) and then down to Radiology for the MRI. And then (hopefully) we will get admitted to the 7th floor without too much delay.
The plan is for granny to actually stay the night Friday night. Rachel is on duty Saturday night and Roger on for Sunday. I am sure there will be more updates over the next few days.
Big thanks to Bob for jumping in with both feet on the Head Shaving party and for all the other "heads" that have volunteered. I think plans are slowly falling into place.
Another great day for Charlotte. She is amazing!
Yesterday, I came home from Costco with three Nandina plants that John had helped me pick out for the front yard. Charlotte greeted us at the care and proceeded to ask all kinds of questions about what we were doing. She said, "How many plants did you buy?" and I said, "Well, you tell me." So she responded, "You bought the number of plants that match my age." WOW! Pretty higher level thinking from that kid!
For those of you wondering about further plans with the Head Shaving Party, the current schedule is that the party will be Friday, April 10th from 3-8 PM at Romp n' Roll (Virginia Center) with lots of play time for the kids. We will probably do the actual head shaving/decorating at about 6 PM to allow for folks to get off of work, etc.
Bob Flanagan and some other folks from the Ashland Jaycees have stepped up to take the reins for this current project. If you would like to coordinate efforts with him, please contact him at bob@dewre.com
I can't think of anything else to say tonight. LOST was great until it started tugging on those "mommy" heart strings. Damn that show!!!! I'm going to try to be brave and watch the series finale of ER tomorrow but I know it will be one big bawl-fest.
Time for night-nights. Early day at the clinic tomorrow.
Rachel
Update:
The girls are off to see Dr. Kahn.
Urgh.
Earlier, I had been trying to talk to Charlotte about what to expect and all that but this time, I just couldn't bring myself to ruin that great mood she's been in all week. When I tried to bring it up last night that she had to go back in and see Dr. Kahn about the "headache in her head" her face visibly darkened and she said, very matter of factly, "My headache's all gone now." Feel kind of sneaky not warning her better about today.
Gotta love that parental guilt.
Gotta go do Romp n' Roll To Go at Primrose. Thanks to Karen Giles for helping out this weekend with the Spring Fling. Did I mention that Primrose is using the event as a partial fundraiser for A.S.K. in Charlotte's name?
Thanks guys.
p.s. Where is Rarotonga?
Update, Today was Kind of Rough:
And now we begin the slow descent...
Today was kind of rough. She went in first thing for the catheter. She knew it was coming so despite getting to watch Strawberry Shortcake on DVD, having all her favorite loveys close by and mom's hand to hold, the whole experience was rather traumatic. Chocolate milkshake after it was finished made it a little better, I think.
We got home around lunch time to find John and Kolbey cleaning the house top to bottom! Excellent!
She spent most of the day on the grumpy, clingy, whiny side. She knows that she is going back into the hospital tomorrow and she is not very happy about it.
Meanwhile we are mostly packed and ready to go. Kind of getting this routine down to a science with what we need, etc. We will go straight to the clinic in the morning for blood draws (labs) and then down to Radiology for the MRI. And then (hopefully) we will get admitted to the 7th floor without too much delay.
The plan is for granny to actually stay the night Friday night. Rachel is on duty Saturday night and Roger on for Sunday. I am sure there will be more updates over the next few days.
Big thanks to Bob for jumping in with both feet on the Head Shaving party and for all the other "heads" that have volunteered. I think plans are slowly falling into place.
Tuesday, March 31, 2009
Charlotte is Having the Best Week!
Darn that Adam Sandler!!!
Been a while since the last update. Charlotte is just having the best week. She's walking a lot including multiple trips down to the end of the block and meet-ups with neighbors, eating like there's no tomorrow, talking up a storm, and even using the potty once in a while. It's these kinds of great days that actually make it hard on us when we think of the week to come.
The stress has manifested itself in different ways for Mommy and Daddy. I'll let Rachel tell you her experience in her own words but for me, it came to a head while doing a little work from home on the computer.
I was sitting in the living room, sending emails, making calls, etc...and had the TV on in the background. The movie, "50 First Dates" came on with Adam Sandler and Drew Barrymore.
I LOVE that movie and I was alternating between getting things done and watching the movie. I was really enjoying it until the part came on where she goes to the doctor (played by Dan Akroyd) and they look at all the brain scans to see where her brain damage occured. Between seeing the scans on the wall and weirdly identifying with the dad (actually the whole group of friends and family) who was trying to protect her, I guess something just sort of let loose and I lost it for about a minute. Not something that normally happens.
It could actually have been related to something else since I was feeling kind of "icky" later on in the evening and have only gotten a little better today. I think I have been on the low end of some kind of a cycle and everything has suffered a little. Who knows, I could just be full of crap.
At least I got some new pics up. I'll try to get more going soon.
We still need a volunteer to hang out at the Primrose Spring Fling this weekend (Sat). No setting up or tearing down. Just refereeing the kids so they don't bleed all over each other. Please give us a call if you're available.
We could also still use megaphones of various kinds and scrap PVC pipe for Rompy's Band classes.
Congrats to all who ran the Monument Ave 10K last weekend. I honked at you all each time I drove under the bridge on I-195 as I prepared to go to West Virginia. Good luck to those running the RR Ave 10K this weekend in Ashland. Wish I could join you. Need to run off some steam.
Later,
Rog
Update from Rachel
Yes, I have been amiss in my posting as of late. For those of you who have seen my Facebook status, you might understand...basically, I have been extremely moody the last week or so. Very stressed to say the least. Yes, I know that it is "understandable" but it doesn't make it any easier. And it doesn't make the problems go away. The Charlotte stress is hard enough but work stress and other life stressors keep getting in the way too. It's a lot of balls to keep in the air and I am not a good juggler. This is proving to be a very long and very difficult marathon and I feel like we haven't even gotten through the 10K yet.
This last week, as Roger mentioned, has been alternately positive and negative. It is so great to see Charlotte's progress. She is taking stairs better, getting around really well, eating well, pooping well, full of energy and zip...everything just couldn't be better. And yet the dark cloud of doom that is the next round of chemo keeps looming over our heads. Not looking forward to the catheter going in on Thursday and not looking forward to the marathon hospital stay starting on Friday.
I am extremely grateful to my parents for being here right now. They have been so helpful and Charlotte enjoys spending time with them. It does make it somewhat easier to handle everything else.
I thought I might have more to say but I guess I don't...I'll sign off and hope Charlotte will get a good night's sleep...
Rachel
Been a while since the last update. Charlotte is just having the best week. She's walking a lot including multiple trips down to the end of the block and meet-ups with neighbors, eating like there's no tomorrow, talking up a storm, and even using the potty once in a while. It's these kinds of great days that actually make it hard on us when we think of the week to come.
The stress has manifested itself in different ways for Mommy and Daddy. I'll let Rachel tell you her experience in her own words but for me, it came to a head while doing a little work from home on the computer.
I was sitting in the living room, sending emails, making calls, etc...and had the TV on in the background. The movie, "50 First Dates" came on with Adam Sandler and Drew Barrymore.
I LOVE that movie and I was alternating between getting things done and watching the movie. I was really enjoying it until the part came on where she goes to the doctor (played by Dan Akroyd) and they look at all the brain scans to see where her brain damage occured. Between seeing the scans on the wall and weirdly identifying with the dad (actually the whole group of friends and family) who was trying to protect her, I guess something just sort of let loose and I lost it for about a minute. Not something that normally happens.
It could actually have been related to something else since I was feeling kind of "icky" later on in the evening and have only gotten a little better today. I think I have been on the low end of some kind of a cycle and everything has suffered a little. Who knows, I could just be full of crap.
At least I got some new pics up. I'll try to get more going soon.
We still need a volunteer to hang out at the Primrose Spring Fling this weekend (Sat). No setting up or tearing down. Just refereeing the kids so they don't bleed all over each other. Please give us a call if you're available.
We could also still use megaphones of various kinds and scrap PVC pipe for Rompy's Band classes.
Congrats to all who ran the Monument Ave 10K last weekend. I honked at you all each time I drove under the bridge on I-195 as I prepared to go to West Virginia. Good luck to those running the RR Ave 10K this weekend in Ashland. Wish I could join you. Need to run off some steam.
Later,
Rog
Update from Rachel
Yes, I have been amiss in my posting as of late. For those of you who have seen my Facebook status, you might understand...basically, I have been extremely moody the last week or so. Very stressed to say the least. Yes, I know that it is "understandable" but it doesn't make it any easier. And it doesn't make the problems go away. The Charlotte stress is hard enough but work stress and other life stressors keep getting in the way too. It's a lot of balls to keep in the air and I am not a good juggler. This is proving to be a very long and very difficult marathon and I feel like we haven't even gotten through the 10K yet.
This last week, as Roger mentioned, has been alternately positive and negative. It is so great to see Charlotte's progress. She is taking stairs better, getting around really well, eating well, pooping well, full of energy and zip...everything just couldn't be better. And yet the dark cloud of doom that is the next round of chemo keeps looming over our heads. Not looking forward to the catheter going in on Thursday and not looking forward to the marathon hospital stay starting on Friday.
I am extremely grateful to my parents for being here right now. They have been so helpful and Charlotte enjoys spending time with them. It does make it somewhat easier to handle everything else.
I thought I might have more to say but I guess I don't...I'll sign off and hope Charlotte will get a good night's sleep...
Rachel
Wednesday, March 25, 2009
Andther Good (and Busy) Day
Another good (and busy) day. Daddy and Charlotte were off to the Doctor as I went to work. It took longer than expected (what a surprise) but:
0. Her levels are all great, some even at "normal" levels
1. They decided to give another dose of Vincristine so she got her "Day 15"/"Day 8" anyway (a week late).
2. They agreed to send a copy of her protocol to the 7th floor (peds unit) for her chart there to avoid any further confusion (don't ask me why this already had not been done).
3. She will be back again next Thursday for a catheter insertion (oh joy) for another 24 hour urine collection.
4. Next Friday we start all over again with an early morning MRI and then admission to the clinic/7th floor.
WHEW!
Her afternoon also included a trip to Chick-Fil-A and some playtime at Romp n' Roll. Now it's Yo Gabba Gabba time ("What's your Talent???") and mommy's gonna see what we can find for dinner.
Did I mention Granny and Gramps arrive tomorrow? Yay! Hoping for a safe and quick trip up the I-95 corridor tonight and tomorrow!
Many of you have mentioned to us that Miss Virginia is currently launching a campaign to raise $500K for children's cancer. If she raises that amount by April 11th, she will be shaving her head! We are doing some "scoping" to see if she could arrange an appearance at Charlotte's party.
Here's the Link if you want to read more about it.
Rachel
Update #2 for the day:
We have an important errand on the Care Calendar for strong backs and a truck. A dear friend and fellow music therapist has donated their old piano to us (long story) and we just need to get it to our house. They live in Powhatan. SOOO...we need someone with a pickup truck and strong back and another 3 someones with strong backs to meet at our house and then drive to Powhatan to get the piano and transport the piano back to our house. Our friend threw out April 4th as a possible date (a Saturday). Pickup just needs to be completed by 11 AM. If you can help, please sign up via the Care Calendar (see information for this on our LINKS page). Once we have everyone signed up to help, we will put everyone on the team in touch for coordination. THANKS.
Also, our good friend Reese had a wonderful article written about her and her family in the Mechanicsville Local newspaper. Here's a LINK to the article...
Roger and Charlotte saw Reese at the Clinic today and it sounds like she's doing well. You can keep up with her on her Caring Bridge site:
www.caringbridge.org/visit/reeseklauer
Rachel
0. Her levels are all great, some even at "normal" levels
1. They decided to give another dose of Vincristine so she got her "Day 15"/"Day 8" anyway (a week late).
2. They agreed to send a copy of her protocol to the 7th floor (peds unit) for her chart there to avoid any further confusion (don't ask me why this already had not been done).
3. She will be back again next Thursday for a catheter insertion (oh joy) for another 24 hour urine collection.
4. Next Friday we start all over again with an early morning MRI and then admission to the clinic/7th floor.
WHEW!
Her afternoon also included a trip to Chick-Fil-A and some playtime at Romp n' Roll. Now it's Yo Gabba Gabba time ("What's your Talent???") and mommy's gonna see what we can find for dinner.
Did I mention Granny and Gramps arrive tomorrow? Yay! Hoping for a safe and quick trip up the I-95 corridor tonight and tomorrow!
Many of you have mentioned to us that Miss Virginia is currently launching a campaign to raise $500K for children's cancer. If she raises that amount by April 11th, she will be shaving her head! We are doing some "scoping" to see if she could arrange an appearance at Charlotte's party.
Here's the Link if you want to read more about it.
Rachel
Update #2 for the day:
We have an important errand on the Care Calendar for strong backs and a truck. A dear friend and fellow music therapist has donated their old piano to us (long story) and we just need to get it to our house. They live in Powhatan. SOOO...we need someone with a pickup truck and strong back and another 3 someones with strong backs to meet at our house and then drive to Powhatan to get the piano and transport the piano back to our house. Our friend threw out April 4th as a possible date (a Saturday). Pickup just needs to be completed by 11 AM. If you can help, please sign up via the Care Calendar (see information for this on our LINKS page). Once we have everyone signed up to help, we will put everyone on the team in touch for coordination. THANKS.
Also, our good friend Reese had a wonderful article written about her and her family in the Mechanicsville Local newspaper. Here's a LINK to the article...
Roger and Charlotte saw Reese at the Clinic today and it sounds like she's doing well. You can keep up with her on her Caring Bridge site:
www.caringbridge.org/visit/reeseklauer
Rachel
Sunday, March 8, 2009
The First 24 Hours are Over
12:16AM
The first 24 hours are over.
We have received the second of the anti-cancer drugs, vincristine, another real winner, (more happy fun time reading at http://www.chemocare.com/bio/vincristine.asp) and the “rescue” drug, Leucovorin, which counteracts the methotrexate. It’s also called a “chemoprotectant.” http://www.chemocare.com/bio/leucovorin.asp See all the new things you’re learning? The vincristine is one of those hair-fall-out drugs so we'll see.
Aunt B (Becky) came relatively early on and gave me the flexibility to be occasionally useless which I was. Sleep was hard to come by last night so I was exhausted most of the day. I did get a nice nap while a couple nurses took CJ into the bathroom and gave her a real bath. Another great crew of nurses. I haven’t given out any new nicknames this time around. (So far!)
Dr. Kahn came by just before Becky got here this morning and addressed the catheter situation. Since the purpose was to keep her urine away from her skin and it wasn’t really working and was actually giving her a great deal of discomfort, Dr. Kahn recommended we just take it out and deal with the skin issue by changing diapers often and applying large amounts of cream every time. It seems to have worked and as soon as the catheter came out, she was a much happier girl. The unfortunate thing is that CJ now associates diaper changes with the pain of her catheter so I taught her to answer the question, “Where’s the catheter?” by saying, “It’s in the trash.”
With release from the catheter came the freedom to go for walks/rides around the floor. We went out and about 4 times visiting some her former nurses in the PACU and PICU and meeting folks in the lounge. There’s one family here from North Carolina who got into a car accident coming back from a ski vacation. Their daughter, Leah, was seriously injured and is in the PICU. They have a tremendously upbeat attitude and are handling it as well as anyone could be expected to. They don’t have a caringbridge site but they will be starting a similar page soon. I’ll try to get that info.
So ya hear the one about the guy who got drunk and lost his two toddler girls in a snowstorm? I did. I really shouldn’t hear stories like that. It gets me so riled. I kind of get beside myself. It completely astounds me how people can get so screwed up that they shuffle what should be the absolutely most important thing in their universe, the care and welfare of their children, to somewhere below getting drunk, doing drugs, taking a dump (which is pretty much what they’re doing to their kids). Talk about another illness that needs a cure yesterday.
OK enough of that, The Rock is hosting SNL, I’m now able to go to Dre McLaughlin’s senior recital at Randolph-Macon College tomorrow at 4pm (gonna be awesome!), and I think Rachel and I are actually going to get another date in after that. Crazy, man!
Need rest too.
11:15AM Update
Good morning,
Not too bad a night for Charlotte except she threw up at about 4am. The anti-nausea drug was due to be re-administered at about 4:30 so they just gave it to her immediately after we cleaned her up. She's been up since but is in pretty good spirits.
On a very nice note, Nurse Princess (her real name) form the PACU down the hall came by and visited a while this morning although CJ was brainfrying on the Micky Mouse Playhouse.
We met another family of a boy caught in a trailer fire a week or so ago. He was burnt over 70% of his body and is in the PICU getting some amazing treatment. Here's an article about it.
http://www.timesdispatch.com/rtd/news/local/article/FIREGAT031_20090303-134405/220517/CJ is fussing. Gotta change a diapey
The first 24 hours are over.
We have received the second of the anti-cancer drugs, vincristine, another real winner, (more happy fun time reading at http://www.chemocare.com/bio/vincristine.asp) and the “rescue” drug, Leucovorin, which counteracts the methotrexate. It’s also called a “chemoprotectant.” http://www.chemocare.com/bio/leucovorin.asp See all the new things you’re learning? The vincristine is one of those hair-fall-out drugs so we'll see.
Aunt B (Becky) came relatively early on and gave me the flexibility to be occasionally useless which I was. Sleep was hard to come by last night so I was exhausted most of the day. I did get a nice nap while a couple nurses took CJ into the bathroom and gave her a real bath. Another great crew of nurses. I haven’t given out any new nicknames this time around. (So far!)
Dr. Kahn came by just before Becky got here this morning and addressed the catheter situation. Since the purpose was to keep her urine away from her skin and it wasn’t really working and was actually giving her a great deal of discomfort, Dr. Kahn recommended we just take it out and deal with the skin issue by changing diapers often and applying large amounts of cream every time. It seems to have worked and as soon as the catheter came out, she was a much happier girl. The unfortunate thing is that CJ now associates diaper changes with the pain of her catheter so I taught her to answer the question, “Where’s the catheter?” by saying, “It’s in the trash.”
With release from the catheter came the freedom to go for walks/rides around the floor. We went out and about 4 times visiting some her former nurses in the PACU and PICU and meeting folks in the lounge. There’s one family here from North Carolina who got into a car accident coming back from a ski vacation. Their daughter, Leah, was seriously injured and is in the PICU. They have a tremendously upbeat attitude and are handling it as well as anyone could be expected to. They don’t have a caringbridge site but they will be starting a similar page soon. I’ll try to get that info.
So ya hear the one about the guy who got drunk and lost his two toddler girls in a snowstorm? I did. I really shouldn’t hear stories like that. It gets me so riled. I kind of get beside myself. It completely astounds me how people can get so screwed up that they shuffle what should be the absolutely most important thing in their universe, the care and welfare of their children, to somewhere below getting drunk, doing drugs, taking a dump (which is pretty much what they’re doing to their kids). Talk about another illness that needs a cure yesterday.
OK enough of that, The Rock is hosting SNL, I’m now able to go to Dre McLaughlin’s senior recital at Randolph-Macon College tomorrow at 4pm (gonna be awesome!), and I think Rachel and I are actually going to get another date in after that. Crazy, man!
Need rest too.
11:15AM Update
Good morning,
Not too bad a night for Charlotte except she threw up at about 4am. The anti-nausea drug was due to be re-administered at about 4:30 so they just gave it to her immediately after we cleaned her up. She's been up since but is in pretty good spirits.
On a very nice note, Nurse Princess (her real name) form the PACU down the hall came by and visited a while this morning although CJ was brainfrying on the Micky Mouse Playhouse.
We met another family of a boy caught in a trailer fire a week or so ago. He was burnt over 70% of his body and is in the PICU getting some amazing treatment. Here's an article about it.
http://www.timesdispatch.com/rtd/news/local/article/FIREGAT031_20090303-134405/220517/CJ is fussing. Gotta change a diapey
Saturday, March 7, 2009
First Day of Chemo
Here's your update.
Yes, it has been a LONG day but I wanted to try to get an update in before I hit the hay. Another long one tomorrow.
Charlotte and I made it to MCV a little after 9 AM and we finally got admitted to the 7th floor at about 3:30 PM. We hung out in the Hem/Onc clinic for most of the day with a brief respite outside for lunch (yay hot dog cart and park benches...oh and did I mention cheesy poofs!). Fortunately, the Hem/Onc clinic is like an amusement park/toy store with medical treatments going on in the background. There are lots of kids getting lots of different treatments but there is a DVD player/VCR/video game system everywhere you look plus toys and books galore so CJ was pretty well entertained.
The worst news besides the wait for a bed was that she actually has to have a foley catheter put in for the duration of the chemo since the methotrexate is highly toxic and can hurt her if it gets on her skin (i.e. through the diaper). We even have to be extra careful and wear gloves during diaper changes, etc. So putting in the catheter was no fun. She now knows what is coming so in anticipation, she gets upset and extra tense which, of course, does not make the process any easier. Sigh.
We did finally settle in well to our room which we are currently sharing with a little two-month old boy who is being released tomorrow. After sufficient IV fluids started, they started the anti-emetics (AKA the "no-throw-up meds"). That was when Daddy and Aunt B entered the picture and we traded places.
I wish the hospitals gave you little bar code key tags like you get at the grocery store for being a "frequent patient". They could just save all of my information in their files and then when they need us to check in all over again, they could just scan the bar code. Would save a lot on redoing many things. I do feel like an "old pro" now when it comes to navigating around the hospital, getting through security, and managing all the ins and outs of just being there. Hard to believe that the place was pretty foreign to me before about 6 weeks ago. I had been there a few times and knew the basics but NOW I know where the turtle is that Charlotte has to visit every time we pass through the Gateway building. Plus I know the quickest route to Chick Fil A from any point in the hospital. Hee hee...
In all honesty, for those of you who marvel at my strength and attitude at this time (and I do appreciate the praise and support), I have got to say that I'm EXHAUSTED. It's been a very tiring week...probably more mental than physical. We are happy to have Aunt B here and hopefully Roger and I can get a date in here one of these days. Maybe even with each other!! Ha ha!
I am off to Romp n' Roll tomorrow for what is the OFFICIAL last day of the winter session (sorry, Rog, but you forgot about Saturday!). And then 3 birthday parties. yay! Then I think 2 more parties on Sunday. Did I mention it was a busy weekend?
We have staff and volunteers covering our Bon Secours event at Memorial Hospital on Sunday. Know any moms to be? Send them out for free stuff!!
Much thanks to Kolbey. I came home tonight to a clean floor in the kitchen and clean bathrooms upstairs. Very nice!
Ok. That's it now, I mean it...
(Anybody want a peanut?)
Yes, it has been a LONG day but I wanted to try to get an update in before I hit the hay. Another long one tomorrow.
Charlotte and I made it to MCV a little after 9 AM and we finally got admitted to the 7th floor at about 3:30 PM. We hung out in the Hem/Onc clinic for most of the day with a brief respite outside for lunch (yay hot dog cart and park benches...oh and did I mention cheesy poofs!). Fortunately, the Hem/Onc clinic is like an amusement park/toy store with medical treatments going on in the background. There are lots of kids getting lots of different treatments but there is a DVD player/VCR/video game system everywhere you look plus toys and books galore so CJ was pretty well entertained.
The worst news besides the wait for a bed was that she actually has to have a foley catheter put in for the duration of the chemo since the methotrexate is highly toxic and can hurt her if it gets on her skin (i.e. through the diaper). We even have to be extra careful and wear gloves during diaper changes, etc. So putting in the catheter was no fun. She now knows what is coming so in anticipation, she gets upset and extra tense which, of course, does not make the process any easier. Sigh.
We did finally settle in well to our room which we are currently sharing with a little two-month old boy who is being released tomorrow. After sufficient IV fluids started, they started the anti-emetics (AKA the "no-throw-up meds"). That was when Daddy and Aunt B entered the picture and we traded places.
I wish the hospitals gave you little bar code key tags like you get at the grocery store for being a "frequent patient". They could just save all of my information in their files and then when they need us to check in all over again, they could just scan the bar code. Would save a lot on redoing many things. I do feel like an "old pro" now when it comes to navigating around the hospital, getting through security, and managing all the ins and outs of just being there. Hard to believe that the place was pretty foreign to me before about 6 weeks ago. I had been there a few times and knew the basics but NOW I know where the turtle is that Charlotte has to visit every time we pass through the Gateway building. Plus I know the quickest route to Chick Fil A from any point in the hospital. Hee hee...
In all honesty, for those of you who marvel at my strength and attitude at this time (and I do appreciate the praise and support), I have got to say that I'm EXHAUSTED. It's been a very tiring week...probably more mental than physical. We are happy to have Aunt B here and hopefully Roger and I can get a date in here one of these days. Maybe even with each other!! Ha ha!
I am off to Romp n' Roll tomorrow for what is the OFFICIAL last day of the winter session (sorry, Rog, but you forgot about Saturday!). And then 3 birthday parties. yay! Then I think 2 more parties on Sunday. Did I mention it was a busy weekend?
We have staff and volunteers covering our Bon Secours event at Memorial Hospital on Sunday. Know any moms to be? Send them out for free stuff!!
Much thanks to Kolbey. I came home tonight to a clean floor in the kitchen and clean bathrooms upstairs. Very nice!
Ok. That's it now, I mean it...
(Anybody want a peanut?)
Thursday, March 5, 2009
Quick Update
Quick update:
I feel like I have been on the phone or managing stuff all day. Between tech support for our DSL (that did NOT get fixed with an onsite visit today), other business related stuff, and other misc. phone calls, it feels like I haven't stopped. What time is it?
Anyway, the main update is that we have determined that Dr. Khan and Charlotte's oncology care at MCV is considered in network and if all goes well, we will start chemo tomorrow (Friday). We will get everything with the stem cell stuff worked out and have a few options including:
0. Our rep from Care Connection is talking to the VA insurance commission to see if they can intervene. It seems ridiculous that there is no Virginia hospital (especially a teaching hospital) on their "approved" list.
1. Dr. Khan has a peer-to-peer meeting set up with another doctor who works for humana and hopefully they can work things out without filing a formal grievance.
2. We have the "formal grievance" option if none of that works but the good news is that we can start chemo and have time to deal with the stem cell issue.
Miss Charlotte is much happier now that the catheter has been removed and she has been a busy bee today, making pictures, "wrapping" presents with paper and decorating the wrap and being in all other ways a busy and adorable preschooler.
Gotta run and be busy some more...
Thanks again for everyone's ideas, comments, support, and help. I noticed on the news last night that the topic of health care is hot, hot, hot on the agenda in DC right now so this is a great time to make your representatives aware of how frustrating our current system is.
Rachel
I feel like I have been on the phone or managing stuff all day. Between tech support for our DSL (that did NOT get fixed with an onsite visit today), other business related stuff, and other misc. phone calls, it feels like I haven't stopped. What time is it?
Anyway, the main update is that we have determined that Dr. Khan and Charlotte's oncology care at MCV is considered in network and if all goes well, we will start chemo tomorrow (Friday). We will get everything with the stem cell stuff worked out and have a few options including:
0. Our rep from Care Connection is talking to the VA insurance commission to see if they can intervene. It seems ridiculous that there is no Virginia hospital (especially a teaching hospital) on their "approved" list.
1. Dr. Khan has a peer-to-peer meeting set up with another doctor who works for humana and hopefully they can work things out without filing a formal grievance.
2. We have the "formal grievance" option if none of that works but the good news is that we can start chemo and have time to deal with the stem cell issue.
Miss Charlotte is much happier now that the catheter has been removed and she has been a busy bee today, making pictures, "wrapping" presents with paper and decorating the wrap and being in all other ways a busy and adorable preschooler.
Gotta run and be busy some more...
Thanks again for everyone's ideas, comments, support, and help. I noticed on the news last night that the topic of health care is hot, hot, hot on the agenda in DC right now so this is a great time to make your representatives aware of how frustrating our current system is.
Rachel
Wednesday, March 4, 2009
Insurance Dance Continues
Charlotte got the catheter this morning and Rachel says she was very brave. She also got the baseline set for her hearing (let’s hope it doesn’t change much).
The insurance dance continues. Now we come to find out that ALL the chemotherapy is considered “out of network.” Rachel only learned of that by chance from talking to Dr. Kahn. So Rachel was on the phone with Yolanda from Humana Benefits trying to figure things out. At one point Yolanda (very politely and trying to be helpful) says, “You could just go to St. Jude.” There is no “just going to St. Jude.” I’ll tell you what, if we do go there, I’m camping out at the Elvis Presley Archive. (Anybody know someone in Memphis who needs a singer?) There are other possibilities as well. I'll let Rachel update you on all that.
Dr. Kahn has stated that he will start filing papers to get this cleared up but it takes a very long time to process so unless we can somehow get it expedited, we won't be starting chemo tomorrow. Which means that the whole catheter thing was unnecessary.
Keep writing those letters and send the positive thoughts our way. Our frustration level is rising.
Got some Styrofoam peanuts and bubble wrap and I understand there are some materials on the way. Thanks everyone.
Charlotte Bracelets are in! We will probably have some at the front desk but there are so many ordered, we will most likely have to put in yet another order! This time for 1000!
Volunteer needed!
This Sunday, Bon Secours is having one of their baby expos at Memorial Regional Hospital. With all the things going on in our lives, both personally and professionally, I was just going to let it happen without us (me) but then remembered our amazing network. So I thought I’d put out the word.
The commitment will be from about 2pm-5pm at Memorial Regional on Meadowbridge Rd off of 295. Building 1.
Please email us or call my cell if you are interested (540-220-4922). Thanks a ton in advance.
Roger
The insurance dance continues. Now we come to find out that ALL the chemotherapy is considered “out of network.” Rachel only learned of that by chance from talking to Dr. Kahn. So Rachel was on the phone with Yolanda from Humana Benefits trying to figure things out. At one point Yolanda (very politely and trying to be helpful) says, “You could just go to St. Jude.” There is no “just going to St. Jude.” I’ll tell you what, if we do go there, I’m camping out at the Elvis Presley Archive. (Anybody know someone in Memphis who needs a singer?) There are other possibilities as well. I'll let Rachel update you on all that.
Dr. Kahn has stated that he will start filing papers to get this cleared up but it takes a very long time to process so unless we can somehow get it expedited, we won't be starting chemo tomorrow. Which means that the whole catheter thing was unnecessary.
Keep writing those letters and send the positive thoughts our way. Our frustration level is rising.
Got some Styrofoam peanuts and bubble wrap and I understand there are some materials on the way. Thanks everyone.
Charlotte Bracelets are in! We will probably have some at the front desk but there are so many ordered, we will most likely have to put in yet another order! This time for 1000!
Volunteer needed!
This Sunday, Bon Secours is having one of their baby expos at Memorial Regional Hospital. With all the things going on in our lives, both personally and professionally, I was just going to let it happen without us (me) but then remembered our amazing network. So I thought I’d put out the word.
The commitment will be from about 2pm-5pm at Memorial Regional on Meadowbridge Rd off of 295. Building 1.
Please email us or call my cell if you are interested (540-220-4922). Thanks a ton in advance.
Roger
Thursday, February 26, 2009
New Photos of Charlotte and news from Dr. Khan
By special request: we finally posted a few new photos in the photo section. Check out Charlotte working so hard in therapy!
We're off to see Dr. Khan this afternoon and will hopefully have more news about chemo timeline later today.
We said goodbye to Grandpa and Grandma Bonita this morning. They're headed to Florida (so jealous...even with the slightly warmer weather, I'm sick of winter).
So, anybody else see LOST last night? Dude! What an awesome show! It is definitely the only show I keep up with anymore on a regular basis and they only one that I HAVE to see "live" each week. I'm totally amazed by the acting and the amazing storytelling. True genius.
Gotta go love my daughter.
Rachel
Our visit with Dr. Khan is finished. Lots of news...
First of all, the parking gods were with us today because finding a spot in the garage was totally hassle free. I think Roger is my good luck parking guru. He has the best karma for stuff like that.
Of course, getting in to see the doctor was not nearly as lucky. It wasn't horrible, but we were definitely on "hospital time". Charlotte was sufficiently entertained by volunteers and the wonderful music therapist at MCV (who could that be? Thanks, Melissa!).
The Hem/Onc clinic is like a super-charged doctor's office. We loved the animal-themed rooms (especially for a kid like Charlotte who loves wildlife) and the in-room entertainment is super deluxe (DVD players and VCRs in every room). So even though we had to wait, we had a lot to entertain us.
Dr. Khan took some history and got an update. Our current plan is to begin chemotherapy a week from today (why does everything seem to happen on Thursdays for us?).
Some not so good news is that because she's not back to being "potty trained", they will need to put in a catheter on Wednesday to collect an accurate urine sample for about 24 hours. She will also get a hearing test to get a baseline as some of the chemo drugs can cause temporary and/or permanent hearing loss in kids.
Thursday will start at about 9 AM in the clinic with IV fluids and getting everything "ready". Then we will be admitted into the hospital until probably Monday. She will have a course of 4 different chemotherapy drugs as well as other medications that combat some of the effects of the chemo. everything will be administered via IV. We will be back on the 7th floor of the main hospital but do not need to be in the PICU or the Intermediate Unit.
Roger and I are currently figuring out our schedule for the weekend and we will let you know if we need any assistance. The good news is that Aunt B will arrive on Friday so that will help a lot!
She will have PT/OT at Children's until this starts and may even be able to continue therapy at the hospital as long as her energy level stays up.
For those wondering, visitors will be welcome as long as the "normal" precautions are observed. Please don't visit if you are fighting a cold or recently got over being sick. We don't know at first how she will react to all of the medications so don't be surprised if you do choose to visit and she is not up for "social" time.
I guess that's all for now. I'm sure Roger will add his two-cents this evening.
Rachel
We're off to see Dr. Khan this afternoon and will hopefully have more news about chemo timeline later today.
We said goodbye to Grandpa and Grandma Bonita this morning. They're headed to Florida (so jealous...even with the slightly warmer weather, I'm sick of winter).
So, anybody else see LOST last night? Dude! What an awesome show! It is definitely the only show I keep up with anymore on a regular basis and they only one that I HAVE to see "live" each week. I'm totally amazed by the acting and the amazing storytelling. True genius.
Gotta go love my daughter.
Rachel
Our visit with Dr. Khan is finished. Lots of news...
First of all, the parking gods were with us today because finding a spot in the garage was totally hassle free. I think Roger is my good luck parking guru. He has the best karma for stuff like that.
Of course, getting in to see the doctor was not nearly as lucky. It wasn't horrible, but we were definitely on "hospital time". Charlotte was sufficiently entertained by volunteers and the wonderful music therapist at MCV (who could that be? Thanks, Melissa!).
The Hem/Onc clinic is like a super-charged doctor's office. We loved the animal-themed rooms (especially for a kid like Charlotte who loves wildlife) and the in-room entertainment is super deluxe (DVD players and VCRs in every room). So even though we had to wait, we had a lot to entertain us.
Dr. Khan took some history and got an update. Our current plan is to begin chemotherapy a week from today (why does everything seem to happen on Thursdays for us?).
Some not so good news is that because she's not back to being "potty trained", they will need to put in a catheter on Wednesday to collect an accurate urine sample for about 24 hours. She will also get a hearing test to get a baseline as some of the chemo drugs can cause temporary and/or permanent hearing loss in kids.
Thursday will start at about 9 AM in the clinic with IV fluids and getting everything "ready". Then we will be admitted into the hospital until probably Monday. She will have a course of 4 different chemotherapy drugs as well as other medications that combat some of the effects of the chemo. everything will be administered via IV. We will be back on the 7th floor of the main hospital but do not need to be in the PICU or the Intermediate Unit.
Roger and I are currently figuring out our schedule for the weekend and we will let you know if we need any assistance. The good news is that Aunt B will arrive on Friday so that will help a lot!
She will have PT/OT at Children's until this starts and may even be able to continue therapy at the hospital as long as her energy level stays up.
For those wondering, visitors will be welcome as long as the "normal" precautions are observed. Please don't visit if you are fighting a cold or recently got over being sick. We don't know at first how she will react to all of the medications so don't be surprised if you do choose to visit and she is not up for "social" time.
I guess that's all for now. I'm sure Roger will add his two-cents this evening.
Rachel
Subscribe to:
Posts (Atom)