Med. residents

Pretty rough night for both me and Charlotte. She didn't settle down until way past my bedtime and then was up again about 4 am complaining of pain and HUNGRY. She ate a whole bowl of cereal and milk. Complaining of more pain even after the T3. Just as nurse Princess was about to give her some morphine, she fell asleep so we just let her sleep. Of course, then the litany of med students/residents came in starting at 6 AM. Three of them....all wanting to do the same thing, ask Charlotte the same questions, and ask me the same questions. All spaced about 20 minutes apart. Sheesh.
My biggest concern right now for her is this head pain. While I really want to go home tomorrow, I would like to think that her pain management was more...managable. I guess we will see what the doctors say today.
I must get ready for the day. Big meetings and work...where's my coffee???

Let's get it Moving

Kinda in limbo land right now. Doctors have visited (while I was out this morning) but no real word on a release date/time. More and more we are feeling like the pain is due to actions in the belly, not the head. Her belly is SO distended and now she is telling us that her bottom hurts. Poor thing! We have tried a lot of things including miralax, suppositories, squeezing play doh and her animals, eating apples and drinking juice, the WORKS. Doctors trying to problem solve about next step.
She did get up and about a lot today, including a visit to one of the playrooms. She put together a penguin puzzle with help and we did some play doh fun.
Resting now and trying to push that poop out.
Rachel

I love how poop is such a borderline taboo thing to talk about even though we all do it one way or another. We don't want to acknowledge it when things are working smoothly but boy, does life stink (literally and figuratively) when it doesn't! Charlotte is showing us that right now.
So let's embrace our poop! Let's become one with our poop and show that world the power of our excrement!!! Go to your windows, open them up, stick your heads/butts outside and shout/fart to the heavens, "I'm constipated and I'm not going to to take it anymore!!!"
You may think I have lost all sense of decency but I actually want to minimize people's aversion to thinking about this. I believe strongly in the power focused at us at the moment and I would love everyone to focus their thoughts, prayers, meditations, yes, even your visualizations, on Charlotte's plight of poop. She's very unhappy.
Thanks,
Rog


Love Roger's most recent post. Ah, the power of the poop!
The bad news is that it doesn't look like tomorrow is our "release date". I think we have been denied our parole another day. According to nurse Traci (who I think is AWESOME since she knows all the words to all the Yo-Gabba-Gabba songs and I don't), they are going to start her on a diuretic tomorrow that will try to relieve some intracranial pressure and, of course, we are still working on the digestive actions.
So it looks like we will

On a more serious note: I just read Arlene Unger's post and I wanted you to know some about her late husband, Bruce.
First off, he was a brilliant man and unafraid to question anyone who he thought was giving him the business yet at the same time, he was affable enough to make you glad to come clean to such a nice guy. I loved sitting with/near him at faculty luncheons, when I could find a seat, because he was always good for a thought provoking, if slightly verbose, grilling of the speaker! :-)
He also LLLOOOVVVEEEDDD oldies and had a vinyl record collection to die for! A few times he came into my radio show at WHAN and did an oldies segment for R-MC WAVE Radio. He also guest lectured for my History Of Rock class at R-MC and I learned about as much as the students and completely stole his PowerPoint presentation (with his blessing, of course)!
It seems ironic that a brain as powerful as his was the location of what felled him. Maybe not. Maybe in a weird way it was fitting. Doesn't make it any more pleasant that his life ended that way. Maybe I'm just rationalizing what I don't understand. Been doing that a lot lately.
Here I am trying to make you think I was best friends with him or something but I actually only knew him for a few years. He made you feel that way. I really liked him.ll be here a while longer. We will continue to "make do" and will continue to pursue all her therapies. Keep thinking non-constipating thoughts. Think of flow...free flow...for her head and her belly....
That is all...


Thanks for the support regarding all the constipation. We do know that the combination of pain meds, multiple anaesthesias, a basically sedentary lifestyle for three weeks, and other issues have all contributed to her problems. We have tried some dietary options as well but my personal opinion is that if an enema (or in the case of some days multiple enemas) isn't working, we have some serious trouble! Maybe we can use some of Roger's flax seed stash to make some cookies/muffins.
She is in a lot of pain right now but did eat a good dinner (ravioli, broccoli, peaches and coco-lax milkshake!)
Gotta go distract the princess as best I can.

Announcing the Care Calendar!

We have launched our Care Calendar site. There is not much there right now. However, when we get home, we will fill in more regarding our domestic needs. We are expecting we may need help with housekeeping, getting Charlotte to/from therapy appointments, hanging out with her from time to time, various errands, and possibly meals down the line.
For right now, as we are on "standby" for our hospital departure, our needs are pretty simple: we need some folks to hang out with CJ at MCV in order to give her parents some relief. At this point, we have only requested help through Friday but will update things as we know more about our hospital stay.
To access Charlotte Reynolds's personal CareCalendar site,
visit http://carecalendar.org/logon/11844 and enter the following
information in the appropriate spaces:
CALENDAR ID : 11844
SECURITY CODE : 1806
If you have any questions about this calendar, you can also contact Roger or myself directly via email or our various phone numbers.
Thanks and keep checking often!
Rachel

CT in the ER

Last night was not bad. Charlotte still had head pain but we got her out of bed and she scarffed her dinner while we watched "Enchanted" (very cute movie, by the way). We both went to sleep around 9:30 and I didn't her a peep until 3:25 which is when she started crying very loudly.
New developments: The doc was getting concerned about Charlotte's head pain last night so she ordered a CT scan as soon as possible. At first the nurse, whose name is, I kid you not, Princess, was telling me the only CT machine available was the one in the ER so she was warning me about the sights and sounds one might experience there on a weekend night. I even fashioned a blindfold for CJ under the guise that the lights might hurt her eyes, which has actually been the case lately. At the last minute they sent us to the third foor where she had gotten them before. That was a much calmer ride. CJ slept through most of it.
Now we're waiting. What the pediatric surgeon told me was that they think her ventricals might not be working as well as hoped and they might actually have to go in again to install a shunt after all.
I'll keep you all informed as I can,
Rog

No Shunt

After a much better night of sleep, I feel like a human again.
Dr. Tye came by and told me Charlotte's CT scan looked the same as before so no shunt. That's good news.
Bad news is he thinks it could be aseptic menengitis (kind of a lining irritation after effect of the surgery). They're going to do a spinal tap today to relieve pressure.
They momentarily got CJ back on morphine while they checked to see if the Tylenol 3 was masking the fever symptoms. It wasn't.
Nurse Dana is on the edge of getting a nickname but I can't quite put my finger on what it should be.
If you're planning to visit, please be ready to either wait or not get much action out of her. She'll be sedated for the spinal tap and none knows exactly when that will be.

Spinal Tap

Spinal tap has been done, fluid was drained, pressure was released. They moved her back into the PICU for the procedure and now she's back in her room sleeping soundly. She slept through the move and most of the prep until one of the docs (I call her Dr. Raging Bull) manhandled her onto her side.
I appreciate Dr. Tye's bedside manner more and more whenever I come across someone who seems to have forgotten that the piece of meat in front of them is a person. I constantly have to weigh whether I think a docs/nurses procedure is so important that we need to disturb CJ. The night nurses are so amazing at NOT disturbing her, they have really spoiled me for the other medical professionals who are very capable and proficient at what they do but are a bit tunnel visioned on the procedure sometimes.
I'm sure they have a knickname for me.
So anyway, she woke up as they moved her onto her side and nearly panicked. Probably because she was in a new room and she was pretty sure that being on her side meant that something bad was about to happen to her. Fortunately I was there and when she saw me, she reached out with her right hand and put a death grip on my finger. She made me sing Frosty the Snowman to her and I had a flashback to the moments before her first surgery. I had some real trouble keeping it together. But it was enough for her and she settled down pretty quickly. Then the sedative was administered and she was out. Still took me a moment or two to get my finger unlatched.
After the procedure, Dr. Raging Bull tried to wake up CJ but she wasn't going for it. The doc asked her if she wanted to sleep some more and, with eyes closed, she nodded, "Yes."
For the record, the doctor who actually performed the "LP" (lumbar puncture), Dr. Czynsky, was great, overexplained everything to me, and afterward, showed me the vials of fluid that came out because he knew I like to see that kind of stuff. :-)
In a few minutes it will be 2 hours after the procedure and we're going to wake her up to see if she still has a headache. If she does, it iisn't the fault of the spinal pressure. It would be great to hear her say, "I'm hungry" and not, "My head hurts."
There was another "older" Doctor there who was teaching a couple of med students abut LPs so they'll be ready whenever someone wants to listen to some classic rock albums...uh wait...
It's pretty cool to be part of the education of the next generation of doctors.

Countdown to homecoming

Mommy's turn...
I don't have much to update on the hospital front, but on the home front we are moving right along. The house is just about ready for CJ's homecoming. We have moved the daybed from our guest room downstairs to the dining room, pushed the dining room table to one side of the room, and emptied one of the buffet cabinets. This will give us plenty of room for all her "stuff". We are planning to hang her many get-well cards and posters on the walls. I think we have secured a bed rail too.
Much thanks to Juli and Geoff Tubbs. They have a pre-made and ready to go wheelchair ramp at their disposal. Roger will be contacting them about getting it to us and I was gently reminded by our neighbor and town councilman to double-check with the city about building permit stuff (Thanks, George!). Just in case...
I expect that tomorrow will be another endless day of meeting with doctors and therapists and we are hoping that she will be ready for a transfer home on Tuesday. May take a lot of coordination but it will happen!
It was so nice to be at church today. We had boy and girl cousins baptized today. Welcome to the church family, Brown and Aliyah! The baptisms were beautiful and it was that wonderful combination of comforting and overwhelming to be "home". So nice to see everyone and get well-wishes, wise words, and hugs.
Now I'm at Romp n' Roll. Phyllis is doing some touch-up painting and I'm doing the books. Ugh...a necessary evil of business ownership, I guess. Hopefully we will get to the hospital to relieve Roger soon.
Happy V-D week.

Shrek!

Much laughing tonight as she watched Finding Nemo and Shrek. She also ate a TON more. They weighed her tonight and she came in at 15 Kilos. She weighed 13.7 when she came in the hospital! Guess that hospital food (and the choco chip cookies...) are pretty good.
They did give her a bit more morphine tonight. Supposed to help with her head pain. She was also supposed to fall asleep soon after her bath but still awake. Eyes glued to Shrek...
Hopefully we will have a peaceful night in preparation for a busy day tomorrow.
Rachel

Sleep doesn't come easily

Ok, so my child is seriously strange.
The nurses gave her medicine (including morphine) at about 8:30 (I think?) and then she had her bath. We thought, Ok, she will be asleep before we know it. Well, it's 11 PM and while she is mello-yello, she is most definitely not asleep. She did get the munchies and ate 5 more pretzel sticks and is now munching on a bowl of dry cheerios. She also keeps asking to hold new stuffed animals (she is literally holding Dora, Pooh, and her two beanie babies ALL AT ONCE!). And every once in a while she loops into random statements like, "Mommy and Daddy work at Romp n' Roll and Daddy teaches classes for me..." or "I really love my animals mommy....more cheerios?". She's hilarious! The nurses are astounded that she's still awake. My daughter, the stoner!
Meanwhile, I watched a whole episode of Desperate Housewives online and checked up on Facebook. I don't know about my doped-up child, but mama is tired.
Just remembered to turn on the Starry Night lullaby CD so maybe that will help...

Watching Dora

Another long post lost to the etherworld...Not sure what happened. Let's try it again.
The most important event of the day: It's Peter Gabriel's birthday! "All the monkeys in the zoo wish you Happy Birthday too. Happy Birthday to you!"
Kind of a dicey night for both of us. For CJ because of head pain and rough diaper changes and for Daddy because a customer delivered a package of chocolate macadamia nut cookies to Romp n' Roll and he just HAD to eat almost half the package and now his tummy is rebelling. My own damn fault.
Cj and I are viewing what promises to be the first of many viewings of Dora's Christmas. I reiterate what Rachel said: The things we do for our kids!
As for the ramp...Barclay, if someone could see if the ramp is available, we could keep that on standby until we have a better idea of the demads of our situation. Then we could use it temporarily until the permanent ramp could be built.
It would be an honor to have the permanent ramp built by the drama shop.. Having scampered around on many sets built by the R-MC crew, I know the ramp would be sturdy. James, I know it won't feel complete unless you can put castors on it but I'm hoping you can make that sacrafice. Maybe we can hide a trapdoor smewhere! :-)
Here's the broken record again...The support we've received from all over, but especially from the Randolph-Macon College community has mind blowing. It will take us a lifetime to pay it back/forward but I guess that's how it ought to be, eh?
Gotta go stop Swiper...
Rog

Yea Aunt Phyllis!

A good night's sleep in my bed-sweet-bed and now I'm off to Romp n' Roll for a full day of fun. After being away for three days, the house looks FABULOUS (thanks, Phyllis) and we are working on creative ways to redo the dining room to allow for CJ's new space. I think it will all work out nicely.Thanks for all the RMC offers for a ramp of some type. I think we may be taking you up on that.She had a pretty good evening before I left. The head pain is still fairly constant but when she is well distracted, it's minimal. We still don't know what is causing her head to hurt as the CT scan shows nothing that should be causing pain, but I also wonder if her belly pain just radiates up to her head...or if her general discomfort has turned into "my head hurts" and that is her new phrase for "I'm in pain....get me outta here!". Aunt Phyllis did get some pretty major laughs out of her before we left so that was good.More news later...same bat time, same bat station.Rachel

Waiting for word from the Docs

She has had a very good night with only minimal "wakefulness". Mommy was definitely sick of watching Diego last night but it made her happy...the things we tolerate as parents!
At the moment (8:15 AM) she is still snoozing away peacefully. We are waiting for the doctors to call her for another head CT. Assuming everything goes well, we will begin the discussion about removal of the ventric line. This is just part of the seemingly endless process that counts us down to home (we hope). We will also be able to give her hair a REAL washing when the ventric comes out. Oh joy!
I want to give a small shout-out to the Shultz family. As part of the wonderful care package they brought for us, there was a book of "grown up" puzzles (crosswords, etc.). This has been a great source of amusement for Roger and myself. A good way to pass the time.
I personally slept through Roger's radio appearance so I hope it went well.
On for another busy day.
Rachel

Lines removed!

Another very busy day. Her head CT looked great so they came to remove her ventric line today. One less tube to conten with. She also got a bath and a great hair washing! She is resting peacefully now.
Occupational Therapy came to work with her earlier today. That was a lot of hard work. I think I got a taste of how hard therapy is going to be for her. It was definitely tough for her to move that left side and coordinate bilateral movements with her hands. And of course, in stubborn Charlotte fashion, she fought finishing the task. She knows how hard it is and I am sure it is very frustrating for her. Lots of tears and a very patient OT.
We also had a visit from Dr. Robinson, the rehab specialist. Based on the discussions he has had with the team, they continue to lean more towards outpatient therapy. This will, of course, mean a lot of work but we will be working with a great team. She will need a wheelchair and perhaps a ramp at home (a project for grandpa?). She might need a bed with rails at home but we don't know yet. There is a lot of question about how much mobility she will regain on her left side. She may always have some weakness but she should be able to regain some if not most of her mobility.
Discharge is still looking much like Monday or Tuesday.
It seems that on the food front, I think we have things well covered till then. There is plenty of food in the freezer at home and we have at least a couple meals left to eat from here at the hospital.
I will be setting up a Care Calendar in a few days that will have information about specific needs we may have for child care, meals, errands, etc. I will let everyone know when that is ready and you can jump in to help.
All for now...gotta go grab lunch and caffeine...
Rachel

Feb. 5, 2009

Prayers for Charlotte

Another good and busy day. She was up at 4:30 AM (yawn!) complaining of pain but early morning PBS seemed to help. We put her in her wheelchair to eat breakfast this morning and she wolfed it down. Then it was time for her head CT. Auntie Retta and Aunt Phyllis accompanied her and it seemed to go fine. It was quick so she didn't require sedation. Then she napped for the rest of the morning.
Lunch came and she ate again. Then Shaaron visited for PT (i.e. torture) time. She worked really hard and Shaaron continues to be impressed with her progress. She is leaning more towards outpatient rehab now (yay!!!) Dr. Tye also came by with the results of the CT scan and it looks like all of her ventricles are functioning normally...or as normal as possible. She should not need to have a shunt.
Lunch/dinner arrived from the Ashland Community Preschool with yummy goodies all around. Charlotte napped so we were able to steal away for a meal. She is now entertaining guests and working with the OT.
With all this great progress, it still looks like a discharge date of maybe Monday or Tuesday. We are keeping our fingers crossed and optimistic that things will continue to proceed well.
Two of Charlotte's former teachers from Tuckaway stopped by to visit. They mentioned that they pray for her and family in Venezuela pray for her every night at 6 PM. They asked if we would also lay a hand on her at 6 PM for a blessing...and anyone else that would like to do so. 6 PM is the CJ prayer time!! (not that you can't any other time as well)
All for now..
Rachel

Radio Show for Charlotte

Quick note that few of you will get in time or could even take advantage of if you DO get it, I will be on the air at WHAN 1430AM tomorrow at around 7:15am to talk about this whole thing. I used to have a show there and still help out sometimes with parades and all that jazz.Sometimes I would take Charlotte into the studio with me as I did my show. Charlie "I Cry" Taylor, a frequent guest, gave her the nickname "CJ the DJ" so they're concerned about her like everyone and they want to hear about her progress.Sorry, they're not quite advanced enough to have it on the internet. I'll try to record it though. The number is (804) 798-1010 if you want to harass us while we're on the air.Rog

Feb. 4, 2009

Life in the hospital post-op

She had a very busy morning. She was awake from about 3 am-5 am, just fussy and "not sleepy". We drew some pictures and she finally went back to bed.
After sleeping in until about 8:30/9, she fed herself a BIG breakfast (eggs, sausage, waffles). Dr. Tye clamped her ventric today so we will see how she proceeds with that. If all goes well, we could be released by Monday. PT came by and she worked on walking, standing, and sitting. Shaaron is recommending in patient rehab for now but if she continues to progress enough by our hospital release date, we could look at outpatient rehab. Inpatient would be at Kluge (Charlottesville). Outpatient could be in Richmond at Children's hospital.
She also has a urinary tract infection (oh goodie) so she has started a round of antibiotics. Not so unusual given the fact that she had a catheter along with all the messy diapers. She has actually told us a few times that she needed to go potty and has been making trips to the toilet. What a trooper!
She also had visits from her preschool teacher and Child Life today...all working to keep her engaged and energized. She ate lunch sitting in her wheelchair today ad has done a great job overall. Now she is "chillin'" with Dora and watching some episodes in bed while downing more chocolate milk!!!
That's all the news we know....
Rachel
PS: Much thanks to the Carpenter family for the yummy meal last night. The pork loin and vegetables were fabulous!

Charlotte's 'movements'

Before I proceed further with the Charlotte update, thanks again to the Plank family for a yummy home cooked (and healthy!) meal. Such a blessing.
Charlotte ate a great dinner as well of spaghetti, meatballs, broccoli, and peaches, and (of course) more chocolate milk. She also pooped on her own again. Yay, Miralax!
She has been "vegging" on the tv this evening but that's just fine as mommy needs some time to veg too. We heard from the neurologist that she will have a CT scan tomorrow morning. Her ventric clamp went well today and they will be checking tomorrow to be sure her ventricles are flowing properly with no blockages or mis-flow.
While she occasionally complains of pain, it is not so extreme that it incapacitates her. I managed to give her a sponge bath and comb most of her hair. She's looking better all the time!
Now I'm off to read my Entertainment Weekly while Strawberry Shortcake blares on the TV for Charlotte.
Rachel

Getting used to this routine

Rachel is pulling a three nighter because I need to be places in the mornings which is good and bad. Good because we're getting more and more back into the swing of things but bad because I only got to see Charlotte for about an hour and a half today. What was very nice was that she is looking and acting more and more like Charlotte everyday. I even got invited into the bed to snuggle a little (collective, "Awww!") Of course I was nearly falling off the bed and dosing here and there on top of that so I was in serious danger of rolling off and into the jail-cell style toilet next to the crib.
Tomorrow morning I resume my duties for Romp n' Roll To Go at Primrose School (thanks so much to Babz for covering for me the last two weeks). I get addicted to my kiddies and it will be very nice to see them all again.
We'll be starting our RNR2Go up in Ladysmith next Tuesday which is very exciting. If you're up in that area, stop by Miss Alyson's Countryside Daycare and say hi.
Sounds like a Romp n' Roll commercial, eh?
Now here comes the next fun part...To all of those people who were willing to sit with/watch CJ once in a while, there's a good chance we'll be needing that soon. She might (emphasis on "might") be released from the hospital Monday or Tuesday. With Rachel and I both trying to keep RNR moving forward, and other events coming up, we could use a few good volunteers. I'd like to ask folks to please reiterate their willingness to participate and what times they may be available including possible (but not probable) overnights. I'll pull out the calendar and start signing people up as I can. Thanks in advance.
Then again, everything could change at a moments notice so take it all with a grain of salt. :-) I do know that when we get serious into the rehab and chemo sessions, all bets are off,
Classes at RNR were great tonight and I even got to see a mischievous side to Miss Audrey that I hadn't seen before. Love to see dem kiddies growin'! Also love having a functional water fountain in the back. Thanks Daddyo!
Rog

Feb. 3, 2009

Getting used to the new routine

CJ has weathered the immediate crisis but some of the hardest road lies before us. One of the worst things is not being able to make a schedule of any kind past this week. We still haven't heard from Dr. Kahn as to what to plan and it's kind of driving us bananas. We're ready to get our lives back together and we're going to start cashing in a pile of those offers to help but until we can actually plug real events into/ an actual calendar, we're stuck. So we sit here spinning our wheels in the meantime.
Not quite spinning our wheels. We're happily getting re-involved with Romp n' Roll. Our January Early Bird special went pretty well and it felt great to make volcanos again in Silly Science.
The gifts/cards keep coming in and so do thoughts and prayers from all over. Keep spreading the word. The stuff that doesn't make it into the Lifertime movie of the week is still ahead of us.
I'd like to be mushy again for just a moment and say nice things about my wife. Although this has been very hard on both of us, she has taken the brunt of it; mostly because she's Mom and that special bond between a mother and her child is strong and also because she has had to really let go and delegate jobs out. That takes real strength. I saw it when Charlotte was born and I'm seeing it now. There's always the time or two when I come in handy for a shoulder to cry on or a good boot to the head but she is pretty amazing overall. Don't tell her I said that.

Med Student rounds

Good morning. I think the nurses here will be very happy about the fact tht I won't be here the next three nights. I'm pretty sure I was soring like a jet plane. (there's a song in there somewhere) How Charlotte sleeps through it, I'll never know.
The night went relatively well. She didn't get to sleep until pretty late and one early morning med student decided she just HAD to turn on every light she could find so she could examine CJ. Nurse Amy kind of ran interference and kept the exposure down to a minimum.
I must say I was nervous about a possible stepdown in quality of care but it really hasn't materalized. In fact, Nurse Amy came in at my request and started to work on Charlotte's hair. It was getting very matted. She only got through about 1/2 of it when CJ finally pooped out and fell asleep mid-detangle. We'll tackle the other half today sometime.
Speaking of pooping out, that happened yesterday too. I wasn't here for the blessed event but I understand it wasn't as dramatic as last time but certainly as voluminous!
Did I mention, chcolate milkshakeshakes have officially been added to the diet plan!? WOOHOO!!! Not sure what made me think of that. ;-)
Looking for reviews of virus protection software. I think the new Eee PC has goobers in it and I want to get a good package that will get all the trojans and adware and junk.

Charlotte's meals

I appreciate Roger keeping things updated. As many of you know, I have hit an emotional and physical "wall" this week. I can't believe it has only been two weeks since our world was turned inside out. It seems much longer...
Charlotte is improving every day and I really got a kick out of her last night. She ate a wonderful dinner of spaghetti, meatballs, green beans, oranges, and (of course) pudding and nilla wafers. THEN she topped it off with about 7 (and that is no exaggeration) homemade chocolate chip cookies courtesy of the Plank Family. Thanks so much! We also offered a cookie to nurse Robin and she said, "I can see why Charlotte keeps asking for more! YUM!".
With the calorie intake, we were able to drop her night feedings which is wonderful. One step closer to getting the NG tube removed.
I hate the waiting game. So frustrating. I'm never good at waiting for things anyway. I'm a planner and just want to map it all out. I know that even after we get a roadmap, it will just be a suggested route and "subject to change" but at least it will hopefully help us get things together on the home and business fronts.
I will keep this short as I am ready for lunch and a brief respite from both hospital and Romp n' Roll before returning tonight.
Much thanks to Roger for pulling a double shift last night and for always being there to listen to me. Even at my irrational worst...
Rachel

First plans of Charlotte's treatment

More news...
Dr. Khan stopped by this evening and gave a cursory summary of what is to come. They have reviewed some possible protocols based on the tumor pathology, etc. and want to avoid radiation if at all possible (yay). Instead, we will begin with three rounds of "regular" chemo. These are usually 3-day stints at the hospital and spaced about 21 days apart. Then she will have another MRI. Then she will have some higher dose chemo combined with bone marrow transplants. They will use her own stem cells for these. Hospital stays during this time will be longer (1-2 weeks). After three rounds of this type of chemo, we will have another MRI. At that point, if there is still cancer present, we will discuss other options including possible radiation; however, he is fairly optimistic/confident that this will be sufficient to combat what is left of the tumor. At minimum, the course will take about 6 months. Of course, this is subject to change based on any changes in the tumor, Charlotte's overall health, and any other speed bumps we may hit along the way.
None of this will start for at least 3-4 weeks. They like to wait until her post-surgery body is as healed as possible since the chemo will stop growth of any "healing" or new cells. There is a possibility that we may go home in the interim. Still waiting for word from Dr. Tye although he has checked in regularly and seems happy with her progress.
She had a very busy day again with physical therapy getting her up and out of bed with lots of movement. Plus, there was more poopie today (all on her own!) and LOTS of eating. The NG tube came out which I'm sure makes her more comfortable. The flip side is now she has to take all her medications by mouth and she kinda resists that. Some of them don't taste so good. Thank goodness for milk-shake-shakes to wash them down. Of course, she doesn't know that her shakes are laced with Miralax! Ha ha!
Sleeping now and peaceful. She had a great day and much thanks to Grandpa, Juanita, and Kolbey for entertaining her this afternoon.
I'm tired but otherwise "ok".
Rachel