It was a Decent Night

It was a decent night. Charlotte is still spiking a fever and the Tylenol seems to keep it "artificially" at bay for a while. Then it goes up again. It's been as high as 103! She also keeps complaining that her "bum bum" is hurting and the area is very red. Nurse Nicky made up some special "booty paste" that is even better than the sensicare cream and that seems to help a little. My guess is a UTI but they're waiting on cultures to come back. Also, her latest blood counts were even lower. I guess yesterday, they were low but not quite low enough for platelet or blood transfusion. Today they were VERY low so she is getting a blood transfusion right now. She slept ok considering all of this and I got a few hours of shut-eye too. Now she's watching Sesame Street and drinking some water. Yay!

At least we are back on 7 East this time. It's so much quieter here and it's nice to be with a crew of nurses who really seem to know how to work with younger kids and really know how to interact with Charlotte. Such a difference!

I actually gave myself a "home manicure" last night. I had a fabulous coupon from Bath & Body Works and treated myself to some good stuff, including a manicure kit. Then it was off to CVS for buy 1 get 1 free nail polish. Can't beat it. I offered to paint Charlotte's nails but apparently that's only Miss Heather's job.

It seems that Auntie Retta and our friend Lauren will both be stopping by for a visit today. We will definitely be here through tonight and, of course, we just take it one day at a time. The view from the room is beautiful so I hope everyone enjoys the day!

I realized last night that we (meaning Charlotte) has spent more nights IN the hospital than OUT since January 20th. We've actually been in the hospital over 45 days and out for only 40. And during about half of those 40 days, we have been to clinic or therapy....quite a life!

Well, my tummy is grumbling so I need to round up some breakfast...

Rachel


Overall, it's been a very exhausting but OK day here at Camp MCV. The highlights:

She keeps getting a fever although it is taking longer for her temp to go back up each time after the tylenol. That should be a good sign but it's still frustrating that she's still having fevers.

She is on heavy duty antibiotics and she had her last dose of Vincristine for this cycle today. No poop yet today but we're definitely hoping for one. She's due. Her "bum bum" is still very irritated and we had the doctors take a peek just to make sure we don't need to be more concerned. Right now we are just watching it and slathering with cream. Her cultures have not come back with anything positive and her counts are a little better since the transfusion. They just took more blood/cultures this afternoon.

Her appetite has been very hit or miss all day. Not eating much at all. Her color is better since the transfusion but it seems more hair is falling out. We've been noticing the eyebrows and eyelashes thinning out a lot this round. It really stinks when the lashes get stuck in her eyes. Frustrates her a lot.

Thanks to Auntie Retta for coming to visit for a while as well as Lauren (one of our Romp n' Roll buddies) for bringing mommy lunch. Sweet potato chips....yum....We also got to chat about LOST for a bit. One of my favorite activities ever these days.

She has been quite the couch potato today despite everyone's best efforts to get her up and moving. We did go to the playroom one time and she got up to walk and ride in the wagon. Besides that, we've been coloring, watching movies, and reading books. She's also talking everyone's ear off. I guess she comes by it naturally. I, on the other hand, at least got some activity by going downstairs a few times and taking the STAIRS up on the way back. Seven flights up each time. My only exercise for the day so I'll take what I can get.

So now I'm just counting the minutes until Roger gets here. Should be relatively soon. Then changing of the guard and home to a full day of Romp n' Roll tomorrow. It seems based on everything going on that we will probably be here through Sunday.

A happy birthday to Ian. We are sorry to miss his party tomorrow, especially with the weather as it is.

Oh! A big plug for Megan Blake. Many of you know her from pics of our head shaving party. She's the fabulous woman who gave Charlotte her Bald Chicks Rock t-shirt. She also has her own Caring Bridge page and posts frequently in our Guestbook. Anyway, she was nominated for Supermom of the Year on Richmondmoms.com and totally deserves to win. Please go HERE to vote for her. You don't have to live in the Richmond area to vote for her. She gets a fabulous prize package (including stuff from Romp n' Roll!!) We have a great network here on Caring Bridge so I think if everyone who follows our page votes for her (and get some of YOUR friends to vote for her as well) she has a great chance!!

That's all I have to say for now.

Rachel

It's amazing the effect music has on some people.
We have been playing music for Charlotte since before she was born (surprize!). She was listening to Miles Davis "Kind Of Blue" in utero.

Throughout the tumor journey, we've been trying to keep music going most of the time one way or another whether it's a CD, videos, or me playing Frosty and Battle Cry Of Freedom on the "kitar." Just lately, though, we just haven't had as much straight music going and I wanted to remedy that. I also wanted to play something "normal" for her and in my experiments, I've found two ladies who have captured the ear of the princess.

One is Maggie Drennon (http://www.maggiedrennon.com/). I think she's only OK but we were listening to her CD on my iPod the other day and CJ got quite irate when I wouldn't repeat one of the songs for her.

Another singer with whom CJ has fallen in love, and the best example of "huh?", is Angelique Kidjo, an African pop singer with a seriously edgy voice who can sing intensly rhythmic tunes and beautiful ballads equally well. I played it for her the other day telling her it was her "Happy Music" and she just loved it! Tonight I put on a Kidjo CD and the effect was almost immediate. She settled down and went right to sleep and it wasn't during a slow, soft song either. It was during one of those intense, rhythmically driving songs.

So she's asleep and I thank Angelique Kidjo (http://www.kidjo.com/).

Both Mommy and Daddy are pretty worn out. I had a full day of absolutely WILD classes at Romp n' Roll along with a very fun Birthday Bash. I think there are pics and videos of today's events on Facebook. Lots of fun!

Well, as usual, it has taken me a very long time to get this done and I now need to sleep. See you all in the morning.

zzzzzzzzZZZZZZZzzzzzzzzz!!!

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

An Update

11:11 AM
A quick update while she takes a morning nap...
She slept fairly well over night (as did I, considering the accomodations) and only woke a few times. Quickly went back to sleep. This morning she was pretty grumpy but managed to down some milkshake and a little cereal. Child life brought me coffee (AMEN!) and took her for a fun wagon ride tour of all the wildlife pictures on the unit.
We returned to the room for a Dora Fest and she fell asleep after about 5 episodes...
Most of her levels seems to be coming up as hoped/expected. The one big question right now is that the NP yesterday mentioned "oh, we've put in the order for her vincristine tomorrow" (another chemo drug) but I didn't remember anything in the protocol about her getting drugs in the interim weeks NOR did our regular NP or Dr. Khan say anything about coming back for another dose of chemo this week. So I'm confused. I have asked them to page the docs (Khan is out of town today) and hopefully we will get clarification. My copy of the official protocol is at home (of course). Someone had emailed me a copy but I think I deleted it. So if anyone has one handy, let me know (a few of you know the protocol we are on and are following our story...you know the drill).
I'm not usually one to "question" the docs but at the same time I feel like I stay pretty up on her protocol and this just doesn't sound familiar. I know that they probably double check everything BUT I also know that they deal with a lot of patients with a lot of possibly very similar protocols. Doesn't hurt to check, right? I don't mind getting a reptuation as a "difficult mom".
Lots more hair gone this AM. Noticed a few eyelashes falling out too.
Trying to enjoy a few minutes of peace..
Happy Friday and Happy Spring, everyone!
Rachel


2:34 PM Update
Well, the update on the Vincristine is that yes, it is indeed part of her protocol to get it on days 8 and 15 of each round. What they couldn't seem to tell me was whether she received it on day 8 (since we were still in the hosptial on day 8) and if not, why she did not receive the day 8 dose. Apparently there is some flexibility within the protocol but I was deeply disturbed by the fact that they neither knew whether or not the day 8 dose had even been given or if not why it had not been noted. As someone who has worked in health care, I am all too familiar with the rigors and requirements of documentation. So needless to say, I made a little "stink" over this discrepancy. The doctor (not Dr. Khan as he is out of town) apologized sincerely and was quite red faced (and stammering a bit) over what she termed "some negligence" on their part. She did, however, proceed to explain that they would administer the Vincristine and count this as her "day 15" for this cycle.
Some of you have asked why she would receive more chemo if her counts are low but there are different requirements for the administration of different chemo drugs and Vincristine is not blood count dependent. It is more poop dependent and since we had poop, we are ok to go with this dose. They are actually giving her 75% of the recommended dose anyway.
We will have to continue to monitor her counts (which seem to keep going up. yay!) and there is definite possibility that the setback this week may delay the start of her next round of chemo. We will have to wait and see, of course. We also currently have our next MRI scheduled for mid-April.
The rest of our day has included a walk (her riding in the wagon), visits from an adorable therapy dog and our neighbor Mr. Fred who brought news of the Ashland Variety Show, many get well cards from his children's choir, and an adorably soft (and HUGE) teddy bear. All of these events have brought smiles to Charlotte's day.
She also just downed a small bag of M&Ms. Hooray for calories!
With any luck we might go home by tomorrow or Sunday.
All for now. Rachel

We Have Poop!

7:43 AM
Really not much to report...
Charlotte slept fitfully through the night. I didn't sleep much just because these chairs are so gosh-darn uncomfortable. She spiked another temp but it came down pretty easily again. I keep rubbing her belly and she falls back to sleep for periods of time.
She did ask for and drink some chocolate milk last night and she kept it down so they are going to give her more of the Lactalose in about an hour. We will see how that goes. We also took a few walks last night (at her request..yay!).
The peds unit is probably about the quietest I have ever seen it. You can tell that RSV/Flu season is about over. I think there were only 3 kids (including Charlotte) on 7 East last night and Charlotte was our nurse's only patient. I am sure the nurses enjoy days/nights like these as they don't come around too often.
Not much else to say...hoping for a poopy day.
Rachel

9:26 AM
GOOD NEWS: We have poop! It was a small quantity but this is definite progress.
Bad News: She is officially losing her hair. I noticed some hair missing around her scar area and found lots of hair on her pillow. It's pretty much coming out in clumps. A week to the day since the Vincristine so not too surprising.
We still have more poop to go to get her "cleaned out" so keep up the poopie prayers!!
Rachel

12:43 PM
The Poopie Prayers May Cease and Desist!
We now have had not only 2 poopie diapers but an explosion (to say the least) of bodily fluids and I will spare the details except to say that it all came out at once from both ends.
After a complete bed change, we are back in bed and relatively happier. Still some abdominal/back pain.
Word on the street is that we can cease and desist with the laxatives but her blood counts are very low so that is the next thing we need to battle. Antibiotics will continue and she should get some more blood soon. Can't really go home until she can keep her fever down, bring up her blood counts, and keep some food down.
Met with the nutritionist and they are looking for foods that we can get her to eat. They may also look at an appetite stimulant but that doesn't always work. We talked about milkshakes and when I mentioned "maybe you can add some extra calories into it" Charlotte said, "No Calories, mommy!". (She thinks the "calories" are a kind of medicine that would go in the shake!) Smart girl knows we sneak medicine into her food and milk sometimes. Anyway, we promised her a chocolate milk shake with "no calories" (wouldn't we all like that!)
We did get a bit of fresh air on the deck today and she picked a flower that she said she wanted to save "for Granny and Gramps". She is getting very excited about their arrival next week (as are we!)
Must go attend to the princess.
Rachel

9:36 PM
The rest of the day was pretty rough. Her belly pain/back pain comes in fits and spurts. The bowel stuff keeps "moving" although it is more of a liquid consistency (sorry if that's too gross)...
In a good bit of news, she is eating a little bit again. She's had some of the milkshake, some water, a few saltine crackers, and about 1/2 cup of popcorn. And nothing has come "back" yet.
Her counts were still very low and she had a blood transfusion for about 4 hours (I think about 30 ml of blood). They also have her on Lasix (a diuretic) because her BP has been abnormally high all day. Could be due to excess fluid. The body temp has stayed down around normal, though.
The hair has been "shedding" all day. It also got very matted in the back and in true Charlotte fashion, she has not let me comb it. She was complaining about it saying "Mom, there's a bow in my hair. Take it out." When I told her that it was her own hair all tangled up she told me to get rid of it. Long story short, at her request, I have trimmed some of her hair and what is left will be gone shortly so next time you see our dear Charlotte, she will probably either be wearing a hat or definitely look different.
I think I am more upset about this newest part than she is. She just seems annoyed at finding hair everywhere. It's sad to see all those beautiful curls go away. I know that her hair will come back eventually and that it will be "something new" when it does. It's just another part of her that has to change because of this disease and that's what stinks. At least those beautiful big brown eyes aren't going anywhere. Monica told her today about how some birds use hair to build their nests and told her how she could take some of her hair and put it in the backyard for the birds. I asked her if she wanted to do that and she said yes. So we will be saving as much hair as we can and taking it to our backyard "for the birds" (or the squirrels as the case may be in our neighborhood).
We will see what tomorrow brings. I'm hoping for a Saturday homecoming...
A big thanks to my darling husband for holding down the RnR fort today. I know he had a long day. Thanks to Miguel as well for his carpentry skills!!
Rachel

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