I apologize in advance for our lack of update. It's been a busy 24 hours (or so).
VERY excited to see that there are at least 12 contestants in the burrito eating contest! Hooray! Come on out and support these crazy eaters! That's wonderful!
Yesterday was a busy day all around. Charlotte was active and feeling pretty good most of the day. Her methotrexate level was about 2.1 which is good (it has to be .01 before they can start the next part of chemo but usually after "day 1" it was around 3.). That means her body is flushing the "stuff" out of her at a good rate. They were monitoring her blood pressure for a little while as it seemed to be high...BUT then she pooped and the pressure seemed to drop back to normal. Again, hooray. Her appetite was good yesterday and she ate lots of fruit so I am sure that helped.
Auntie Retta visited in the morning and brought mom coffee and yogurt for breakfast. YUM. She and Charlotte played some Candy Land and we all had some good visiting time. Granny arrived at the hospital around noon. We took a few walks, went to the playroom, and she was in a very "artsy" mood, drawing and doing collages with stickers. I understand that the rest of her day was very active as well.
I left after signing the consent for her MRI today and headed over to Romp n' Roll where things were hoppin'. It was a very busy afternoon and evening with our registration event. Lots of fun and we didn't stop until after 8 PM!! It was good to see many of our regular customers and a few new faces as well. Lots of people asking about Charlotte.
Roger and I got to spend another night together. That is a rarity these days so we try to appreciate it. Now it's off for another busy day and a weekend ahead.
Many of you have commented to us about hoping that the MRI will show shrinkage of the tumor. Interestingly enough, my understanding from Dr. Khan is that we really don't expect a lot of shrinkage during the first stages of chemo. They just hope not to see any additional or new growth. Today they will be looking specifically at her spine to make sure that none of the remaining tumor has spread to other areas of the central nervous system. Until she starts the high dose chemo, they do not expect the tumor to die and/or shrink. Kind of depressing when you think about all that she has been through and how this really doesn't do much (visually) to solve the problem but I know and trust that this will be the right thing for her.
Gotta go get ready for a busy weekend. Can you believe it is May already? When we started this process, it was cold, wintry, and January. Now there is green everywhere and flowers in bloom. And we're starting to think about summer. Crazy!
OH an update about the cruise: I think we are pursuing options for a 5-day Disney cruise that will leave out of Port Canaveral (Florida) sometime in Mid-June 2010. There are more details to come but start to think about whether you and your family would be interested. We know that not everyone will be able to go but Charlotte would love to celebrate her recovery with you on a Disney Cruise! I've already got an idea brewing in my head for t-shirts...
I'm sure there would be some kind of initial deposit but the balance would not be due until April of next year so you have a year to save for the big event. We are working with our travel agent on this and will distribute more information when it is available.
Happy Friday!
Rachel
Charlotte went in for her MRI at about 12:30. I got to the hospital just in time to see her off into the capable hands of the radiologists. She was really funny when they gave her the "sleepy juice". As we may have mentioned before, it has about the same effect as a fast acting cocktail. So true to form with most of the women on my side of the family, she's a "fun drunk" (Roger can elaborate on that) :-) Anyway, she was very giggly and talkative and cracking up me and Granny.
Granny and I went upstairs to wait. She had a pretty good night from what I understand and slept well. Much thanks to Granny for staying with her and giving me and Roger a break.
She came back from the MRI still loopy but has since had some juice, most of an apple, and most of a hot dog. Now she's in Backyardigans Land (at least she's branching out from Dora).
No report from Radiology or Neurology yet about the MRI results but I did talk to Dr. Massey for a bit about her current levels. It looks like Potassium is good again but her Vitamin D is low. Not surprising because the chemo tends to deplete this nutrient a lot. Combine that with the fact that she isn't getting her normal daily dose of "outside" and we have low Vitamin D. Apparently we need to watch this pretty closely as long-term studies of kids with these kind of treatments sometimes result in low bone density down the road. So she'll probably get started on a Vitamin D supplement in addition to her multivitamin regimen.
The subject of radiation was once again broached as well. Looks like this will be even more of an inevitability. As she gets older and we see how the chemo progresses, they will tighten the plans for her protocol but since we weren't able to get 100% of the tumor out and the PNETs tend to be very aggressive, I think they are already looking forward to what type of radiation protocol we will need to consider. I don't have any more info on that yet but I'll find out and you (our loving fans) will be some of the first to know :-)
That's all I have to report for now.
Rachel
Big PS: (and the whole reason I signed on in the first place)...
The Fundraiser at Everything But Water (Short Pump Town Center) has been postponed until May 17th. More info to come soon.
Ok, folks...not so good news:
We got the MRI results back. The long and short of it is: the tumor is growing. It seems that the chemo has not done anything to stave off the growth of these cancer cells. PNET tumors are, as Dr. Khan says, "Notoriously Ill-behaved". And this one is no exception.
SOOOO...what does this mean, you may ask?
We are stopping chemo for now (no sense in putting her through more of this if it's not working). She will go home tomorrow. We may still see her counts drop a bit but hopefully not as much since she didn't get the full round of chemo this time. We will be back in the clinic next week to check levels. We will also have a consult with Dr. Tye next week. He is out of town at a conference this week but has spoken with Dr. Khan and while he has not seen the scans, they are already talking about the possibility of another surgery to debulk as much of the tumor as they can. This would be probably two weeks from now (we have to wait for the chemo to completely get out of her system and for her levels to come up). They have to weigh the pros and cons of a third surgery that will remove as many cancer cells as possible vs the risks of surgery, etc.
Whether or not surgery is an option, the next step will be RADIATION (yes, indeedy, we are there). It will probably be pretty localized (not full head or spine) at this point but probably about 30 days worth. This could start as early as four weeks from now (if no surgery) or later if she has to have surgery. This should be outpatient but just about every day.
And then we reassess and probably jump at that point to the high dose chemo. Hey, at least we're not in a time crunch to get the insurance company to agree with us now (see, I can see the bright side of things....)
Needless to say, this has been very disappointing to me. Roger knows the "scoop" but did not have the advantage of seeing the scans. We will get to meet with Dr. Khan again on Monday to go over questions, etc.
In good news, Charlotte has been in great spirits all day. Thanks to Granny's conversations with the nutritionist, we got some extra strawberries ordered for her and she ate them ALL (not to mention all the berries granny brought yesterday). She also had a visit from Lisa Branner (the Marketing Director at Qdoba who is organizing this great burrito eating EVENT on Sunday). She brought Charlotte chocolate ice cream (YUM!) dinner for me (YUM YUM!) and stayed and talked for a while. She actually got here while I was meeting with Dr. Khan so it was good to have someone to talk to immediately after taking in all this bad news.
Charlotte is deep into her sticker collage creations and made pictures for Lisa AND Dr. Khan. Now it's Dora Time. Anything for this Princess, that's for sure!!!
HUGS and Deep Breaths to everyone. May the prayers for healing continue.
Rachel
Showing posts with label methotrexate. Show all posts
Showing posts with label methotrexate. Show all posts
Friday, May 1, 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!
Tuesday, March 10, 2009
Another Really Good Day
7:39 AM
Yesterday was a very busy day for mommy and daddy. Fortunately, Aunt B was ready and willing to hang out with Charlotte at the hospital. She had a pretty good day, including some regular poop action (hooray for poops!). She ate well and was up till almost midnight (!!!) after only a 45 minute nap. She had been given some goodies from birthday parties over the weekend. I shared those with her and she was very excited.
She is still asleep. I slept as well as could be expected in the "recliner" and will now be out in search of coffee...
Roger and I had a lovely "date" last night including dinner at the Smokey Pig and a movie at home (Burn After Reading...Coen brother's flick.) Very funny. Very Coen Brothers. Oh and did I mention both Brad Pitt and George Clooney are in it??? :-)
All in all, she seems to be tolerating everything well and has been able to get "up and about' more often than our last hospital stay so that is good. She certainly keeps us busy. Ask Roger how many times he has seen Madagascar (1 or 2).
Hope everyone has a great week. Spring session starts at Romp n' Roll and we are excited! New classes and new faces.
Rachel
9:10PM Update
Another really good day. I am very happy to report that she is managing this first round well (everyone knock on some wood). She slept in until almost 10 AM (and only got up because I woke her up). Had a decent breakfast. Her appetite has definitely shifted. Some of her medicines that she takes orally (mostly for prevention of constipation) seem to bother her now when they never bothered her before. She also does not have the "ravenous" appetite that she had previously but she is still eating well.
We went "out and about" for about an hour on the unit including out to the playdeck. Weather was so nice! We rode on the swing and she played "hide and seek" with a plastic hippo we had found in one of the playrooms. She would count and I would hide it in different places around the playdeck. It was a great way to get her walking!
The afternoon was mostly TV/movie watching with some books and time for crafts. She made sticker pictures with some of the great stickers folks have brought her. That was fun.
Aunt B arrived later with dinner (yum AND healthy) and we took another multi-lap walk around the unit. I stopped counting after 5...
We keep seeing lots of her former nurses and doctors and they all remark about how great she looks (and she does). Other than the slight appetite shift and the very full diapers every hour (cause they are flushing her with fluids), she is in great spirits and seems to feel great. Only the occasional "ache and pain" and I haven't heard her say once that her "head hurts".
Word on the street is that they think we will be out sometime Wednesday. They are waiting for her methotrexate levels to fall below .1 before they can administer the next round of meds. Since we started late on Friday this is not too surprising.
All for now...
Rachel
Yesterday was a very busy day for mommy and daddy. Fortunately, Aunt B was ready and willing to hang out with Charlotte at the hospital. She had a pretty good day, including some regular poop action (hooray for poops!). She ate well and was up till almost midnight (!!!) after only a 45 minute nap. She had been given some goodies from birthday parties over the weekend. I shared those with her and she was very excited.
She is still asleep. I slept as well as could be expected in the "recliner" and will now be out in search of coffee...
Roger and I had a lovely "date" last night including dinner at the Smokey Pig and a movie at home (Burn After Reading...Coen brother's flick.) Very funny. Very Coen Brothers. Oh and did I mention both Brad Pitt and George Clooney are in it??? :-)
All in all, she seems to be tolerating everything well and has been able to get "up and about' more often than our last hospital stay so that is good. She certainly keeps us busy. Ask Roger how many times he has seen Madagascar (1 or 2).
Hope everyone has a great week. Spring session starts at Romp n' Roll and we are excited! New classes and new faces.
Rachel
9:10PM Update
Another really good day. I am very happy to report that she is managing this first round well (everyone knock on some wood). She slept in until almost 10 AM (and only got up because I woke her up). Had a decent breakfast. Her appetite has definitely shifted. Some of her medicines that she takes orally (mostly for prevention of constipation) seem to bother her now when they never bothered her before. She also does not have the "ravenous" appetite that she had previously but she is still eating well.
We went "out and about" for about an hour on the unit including out to the playdeck. Weather was so nice! We rode on the swing and she played "hide and seek" with a plastic hippo we had found in one of the playrooms. She would count and I would hide it in different places around the playdeck. It was a great way to get her walking!
The afternoon was mostly TV/movie watching with some books and time for crafts. She made sticker pictures with some of the great stickers folks have brought her. That was fun.
Aunt B arrived later with dinner (yum AND healthy) and we took another multi-lap walk around the unit. I stopped counting after 5...
We keep seeing lots of her former nurses and doctors and they all remark about how great she looks (and she does). Other than the slight appetite shift and the very full diapers every hour (cause they are flushing her with fluids), she is in great spirits and seems to feel great. Only the occasional "ache and pain" and I haven't heard her say once that her "head hurts".
Word on the street is that they think we will be out sometime Wednesday. They are waiting for her methotrexate levels to fall below .1 before they can administer the next round of meds. Since we started late on Friday this is not too surprising.
All for now...
Rachel
Saturday, March 7, 2009
Can I freshen up your methotrexate, Hun?
Can I freshen up your methotrexate, Hun?
Not the most pleasant evening. Aunt B and I got here a little after 9 then she took Rachel home after the changing of the guard. Charlotte was feeling pretty uncomfortable due to the catheter and I was trying to do what I could to calm her including the old, lay-on-the-edge-of-the-bed-try-not-to-fall-out trick which actually worked a little.
The nurse (Nurse Katie, who looks a lot like Reese Whitherspoon) came in to check on the catheter because her diaper was wet and while her diaper was off, she leaked onto the bed. This is a big problem in multiple ways; first off, they need to see how much she’s peeing so they can be sure she’s adequately cleaning out the drugs she’ll be getting. Second, last night, they hooked up the first of the chemo drugs, methotrexate, (a really fun chemical the whole family can enjoy! Learn more about it here: http://www.drugs.com/methotrexate.html), and it’s very toxic, especially when it touches bare skin. That’s why a catheter leak is a bad thing. A monumentally bad diaper rash is the least of her worries if exposed for too long.
So…along about 11pm, Nurse Katie and another whose name I didn’t get came in to deliver the bad news. They were going to have to replace the catheter with one that had a larger balloon. Not nearly as traumatic as the first one but no fun nonetheless. Fortunately, she had already fallen asleep and as soon as the procedure was done and the screaming stopped, she was out again. Unfortunately, Nurse Katie, who is a nice and very capable healthcare professional, has become Medusa in Charlotte’s mind as she was the one who changed the catheter and who woke her up throughout the night to check her out and change more diapers because, guess what, she’s still leaking. Not sure what the point of the catheter is when we’re changing diapers every 20 minutes. Dr. Kahn should be in soon and we’ll figure out what to do next.
Our neighbor is a tiny little boy named Silas and he has a serious hernia. He had surgery to repair it and they will, hopefully, be going home to South Boston (past Farmville) today. He makes the funniest sounds when he sleeps and has a great set of lungs when he’s unhappy. They’ve been great to have as roommates. Mom loves WALL-E as much as we do and has been very patient with all commotion surrounding CJ.
As we’ve said before, if you have to have a sick kid, MCV is the place to bring ‘em. Not the least reason is Miss Monica from the kitchen. She cooks good meals and brings them around to all the kids’ rooms. She also slips parents meals sometimes if there’s something extra. She even threw something we brought into her oven. Breakfast this morning was pancakes, sausage, and eggs. CJ didn’t eat much. I think the chemo is having it’s effect and her belly is a bit upset. Overall she’s doing pretty well now, watching TV, telling everyone she loves me and mommy, telling the nurses they’re nice (angels compared to how she feels about Nurse Katie), and asking lots of questions about Silas in a hushed voice.
Gotta go attend to the princess…
Not the most pleasant evening. Aunt B and I got here a little after 9 then she took Rachel home after the changing of the guard. Charlotte was feeling pretty uncomfortable due to the catheter and I was trying to do what I could to calm her including the old, lay-on-the-edge-of-the-bed-try-not-to-fall-out trick which actually worked a little.
The nurse (Nurse Katie, who looks a lot like Reese Whitherspoon) came in to check on the catheter because her diaper was wet and while her diaper was off, she leaked onto the bed. This is a big problem in multiple ways; first off, they need to see how much she’s peeing so they can be sure she’s adequately cleaning out the drugs she’ll be getting. Second, last night, they hooked up the first of the chemo drugs, methotrexate, (a really fun chemical the whole family can enjoy! Learn more about it here: http://www.drugs.com/methotrexate.html), and it’s very toxic, especially when it touches bare skin. That’s why a catheter leak is a bad thing. A monumentally bad diaper rash is the least of her worries if exposed for too long.
So…along about 11pm, Nurse Katie and another whose name I didn’t get came in to deliver the bad news. They were going to have to replace the catheter with one that had a larger balloon. Not nearly as traumatic as the first one but no fun nonetheless. Fortunately, she had already fallen asleep and as soon as the procedure was done and the screaming stopped, she was out again. Unfortunately, Nurse Katie, who is a nice and very capable healthcare professional, has become Medusa in Charlotte’s mind as she was the one who changed the catheter and who woke her up throughout the night to check her out and change more diapers because, guess what, she’s still leaking. Not sure what the point of the catheter is when we’re changing diapers every 20 minutes. Dr. Kahn should be in soon and we’ll figure out what to do next.
Our neighbor is a tiny little boy named Silas and he has a serious hernia. He had surgery to repair it and they will, hopefully, be going home to South Boston (past Farmville) today. He makes the funniest sounds when he sleeps and has a great set of lungs when he’s unhappy. They’ve been great to have as roommates. Mom loves WALL-E as much as we do and has been very patient with all commotion surrounding CJ.
As we’ve said before, if you have to have a sick kid, MCV is the place to bring ‘em. Not the least reason is Miss Monica from the kitchen. She cooks good meals and brings them around to all the kids’ rooms. She also slips parents meals sometimes if there’s something extra. She even threw something we brought into her oven. Breakfast this morning was pancakes, sausage, and eggs. CJ didn’t eat much. I think the chemo is having it’s effect and her belly is a bit upset. Overall she’s doing pretty well now, watching TV, telling everyone she loves me and mommy, telling the nurses they’re nice (angels compared to how she feels about Nurse Katie), and asking lots of questions about Silas in a hushed voice.
Gotta go attend to the princess…
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?)
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