Very quick update. CJ is doing OK. Just OK.

Very quick update. CJ is doing OK. Just OK. Definitely not thriving but hanging in there. She's still pretty tired although she has been eating and walking around a bit more.She slept nearly all day on Wednesday which meant she woke up at 3am on Thursday morning. Mommy had to work all day Thursday so I took CJ duty. We read books, watched Finding Nemo, ate some...I took her to the clinic to get her Velcade and to get her dressing changed. Nurse April is so good at it, Charlotte didn't even whimper once as she pulled of the cover. Nurse Debbie talked at length with me about how she's doing and whether we should continue the IV fluids overnight (we will).After clinic, we went to People's Bank to drop some more paperwork for the stimulus loan and drop off a $1550.00 check we got from a bazaar held at a church in Charlotte's honor. Thanks so much everyone. We are increasingly having to use CJ funds for things like PT, OT, possible leftover bills from the proton radiation treatments, etc...so it is being utilized. While we were there, Charlotte ate plain M&Ms. (Won't touch the peanut ones)After the bank we went and got "PIZZA AND ICE CREAM!!!" (well only pizza really) at COSTCO. CJ ate about 1/3 of a piece which is pretty good and then we went shopping. I bought her the Snow White DVD set so if anyone was thinking of getting that for her for Christmas, sorry to foil your plans. After an afternnon nap for both CJ and Daddy, we watched it and she watched the whole thing even the scary parts.This morning, Mommy got to get up about 5:30 to take care of the pump. CJ was eating waffles when I came down."Her Devon"is in town and will be visiting sometime today. Should be a bright event in a rainy day.Gotta go play...I mean work.

Since it's rainy and cold today and most of you (at least in VA) are stuck indoors, I will give you all a second update for the day! Lucky you!First of all, good news and not so good news about some of our friends. Our friend Halle's latest MRI was today and it was clear. Hooray! Unfortunately, our friend Alex also had an MRI today and his is showing regrowth. He will probably have another surgery soon.These are both kids (and their families) that we met while in Texas. We will think positive thoughts for both of them!Also, Reese has given up her wheelchair and continues to improve each week. We are so happy that she is on the road to recovery. When Roger was at the clinic yesterday, he got our photo of Charlotte from the Kourageous Kids exhibit. We also got about 8 copies of the Kourageous Kids flyer that features a wonderful picture of Reese on the cover, a great story about her families journey with ASK, and then photos of all the other Kourageous Kids. What is really funny is that on the same page as Reese's story, there is a picture of Charlotte that was taken at the Head Shaving Party (wearing her "Bald Chicks rock" tee). I'm not sure why they used it unless they saw it on Reese's website and thought maybe it was a picture of her (???) but it's a great picture of CJ and a fun surprise for us. Charlotte was up around 5:30 this morning with the beeping of the IV pump. She was awake until about 10 AM. Watched TV for about 3 hours and then just pooped out again.Speaking of poop, a little extra laxative helped the girl along so that is one less worry for the day.I am expecting "Charlotte's Devon" any minute now for a visit so I'm hoping her almost 2.5 hour nap will have been enough to refresh her so that she can be a little bit social. Tomorrow there will be a Bake Sale at the West Park Ukrops (across from Costco on W. Broad Street). Ladies from Richmond Mommies (many of whom are also Romp n' Roll customers) have come together to bake and organize this fundraiser for Charlotte. There will also be Charlotte Bracelets sold there. Please come out from 1-4 PM (brave the weather) and support these fabulous ladies!One of the churches that my parents are involved in (Ebenezer Lutheran in Central Florida) is also holding a rummage sale/bazaar this Saturday for Charlotte. Funds raised will also be matched by Thrivent (a Lutheran Fraternal organization) so they are hoping to raise a good deal of $$. From what I understand, the community has really rallied around Charlotte and especially my parents at this difficult time. We have already been blessed by notes and gifts from members of this church and we are very grateful for their compassion and generosity. My brain keeps gearing up for the (as yet to be scheduled) MRI that will be coming our way in a few weeks. I am trying not to get too worked up about it but I know that this will be a very important scan that will most certainly set our direction for treatment for the next while. One day at a time...I guess that's all I have to say for now. It looks like it will be a cold and rainy weekend in VA so I hope everyone stays warm and dry. I can't believe we had to turn on the heat before October 15th!Rachel

Today marks 8 MONTHS since we started this journey.

Today marks 8 MONTHS since we started this journey. That seems like a long time. And yet the year seems to by flying by. I can't believe we are already thinking about Fall....Halloween, Thanksgiving, and (gulp) Christmas. Crazy!!! Charlotte has been doing well the last couple of days. Her biggest symptom is being "tired". She just doesn't have the energy level of a typical four year old. Our days have been busy with treks to OT, PT, the clinic, etc. Saturday we even went to the Children's Museum so Charlotte could show granny her Kourageous Kids picture. We played there for a while as well and she had a good time. As always, it is SO nice to have my mom here. It definitely allows Roger and I the flexibility to work as we need to. Plus she has a GREAT time with her granny and Uncle Kolbey too. Friday she had a minor meltdown in Physical Therapy. She is working on some tough stuff including bending down, getting up from one knee, and picking objects up off the floor. All things that are challenging to her. We were about halfway through when she just broke down crying (correct that:WAILING) about how she was tired and didn't want to work anymore. We're using a rewards system and everything but I guess we're just going to have to "ramp up" the reinforcement schedule (shout out to all my fellow behavior analysts!!). I foresee M&Ms being added to the reward lineup. Tomorrow is one more clinic trip for the Velcade and then we're off of that for two weeks. Have to work out things with her Accutane prescription because (true to form) things got a bit mixed up in the transition between Texas and Virginia and since Accutane requires an act of Congress (practically) in order to get a prescription filled we have to jump through more hoops and cross more t's. Sigh. Busy week ahead and then Charlotte is off to NM with Daddy so Aunt B can shave her head along with 5 or 6 other brave souls for the Head Shaving Party: West of the Mississippi version. They will just be gone for a long weekend. Before I forget, I have been nominated by someone (I wonder who???) for the Richmond Mommy Makeover Contest. This is the same website that sponsored Roger's Great Richmond Dad contest. I have the opportunity to win a makeover (insert joke here) if I get enough votes....SOOOOO if you feel I am deserving of such an honor (???) cast your vote HERE. Voting ends next Saturday, the 26th.

Today was a mostly good day

Today was a mostly good day.Charlotte and I went to her OT appointment at Children's Hospital (West End) where I was not allowed to follow the princess into the back. So I sat in the lobby and read/played on the iPhone. When they came out, Lauren told me that CJ had worked very hard and they haad worked a little on strengthening that left side as well as using both hands together.Afterwards, we went to Costco and had our traditional Daddy/daughter meal of "pizza and ice cream." Charlotte was beyond adorable. There were lot's of older people eating and they all just fell in love with her. Her lack of shyness didn't hurt. And everyone keeps commenting on her eyes!We ran some other errands and I left multiple messages at the hemonc clinic to try and get a concrete time for our appointment tomorrow. It took all day but finally Nurse April called (love her!) and told us to be there around 9. I'll probably be there quite a bit earlier than that.Tomorrow starts her new chemo drug Velcade. It's nasty and has lots of side effects normally but I believe it's still low dose (I could be wrong) It will be the only chemo drug administered via an IV and we'll go in twice a week for two weeks before switching back to one of the others.Here are some cheery details: http://www.chemocare.com/bio/velcade.aspThis afternoon, after working at Romp n' Roll, Rachel went with Kobey to his own dr. evaluation thingy and when she got back, she discovered she had a fever. So I shooed her off to bed and I didn't work much on RNR stuff.The good part was that Charlotte and I watched movies and read books together.Rachel, seems to be feeling a little better if it weren't for that darned cough that keeps hanging on to both of us.Here's a new musical thing I've been following. Doug Bickel is one of the most amazing musicians I've ever met and he has linked a ton of videos to his Facebook site. Just search for "Doug Bickel' and you'll find him. He's the jazz keyboard professor at U of Miami and his insights into the tunes are very enlightening.Son of Epic (part 2) is on its way.

New Photos of Charlotte and news from Dr. Khan

By special request: we finally posted a few new photos in the photo section. Check out Charlotte working so hard in therapy!
We're off to see Dr. Khan this afternoon and will hopefully have more news about chemo timeline later today.
We said goodbye to Grandpa and Grandma Bonita this morning. They're headed to Florida (so jealous...even with the slightly warmer weather, I'm sick of winter).
So, anybody else see LOST last night? Dude! What an awesome show! It is definitely the only show I keep up with anymore on a regular basis and they only one that I HAVE to see "live" each week. I'm totally amazed by the acting and the amazing storytelling. True genius.
Gotta go love my daughter.
Rachel


Our visit with Dr. Khan is finished. Lots of news...
First of all, the parking gods were with us today because finding a spot in the garage was totally hassle free. I think Roger is my good luck parking guru. He has the best karma for stuff like that.
Of course, getting in to see the doctor was not nearly as lucky. It wasn't horrible, but we were definitely on "hospital time". Charlotte was sufficiently entertained by volunteers and the wonderful music therapist at MCV (who could that be? Thanks, Melissa!).
The Hem/Onc clinic is like a super-charged doctor's office. We loved the animal-themed rooms (especially for a kid like Charlotte who loves wildlife) and the in-room entertainment is super deluxe (DVD players and VCRs in every room). So even though we had to wait, we had a lot to entertain us.
Dr. Khan took some history and got an update. Our current plan is to begin chemotherapy a week from today (why does everything seem to happen on Thursdays for us?).
Some not so good news is that because she's not back to being "potty trained", they will need to put in a catheter on Wednesday to collect an accurate urine sample for about 24 hours. She will also get a hearing test to get a baseline as some of the chemo drugs can cause temporary and/or permanent hearing loss in kids.
Thursday will start at about 9 AM in the clinic with IV fluids and getting everything "ready". Then we will be admitted into the hospital until probably Monday. She will have a course of 4 different chemotherapy drugs as well as other medications that combat some of the effects of the chemo. everything will be administered via IV. We will be back on the 7th floor of the main hospital but do not need to be in the PICU or the Intermediate Unit.
Roger and I are currently figuring out our schedule for the weekend and we will let you know if we need any assistance. The good news is that Aunt B will arrive on Friday so that will help a lot!
She will have PT/OT at Children's until this starts and may even be able to continue therapy at the hospital as long as her energy level stays up.
For those wondering, visitors will be welcome as long as the "normal" precautions are observed. Please don't visit if you are fighting a cold or recently got over being sick. We don't know at first how she will react to all of the medications so don't be surprised if you do choose to visit and she is not up for "social" time.
I guess that's all for now. I'm sure Roger will add his two-cents this evening.
Rachel

Another long day -

Another long day...Roger and I were up early to appear on the American Family Radio show (did you hear it?). It was a great chance to share our story again with the world and talk about how much we appreciate the thoughts, prayers, and support we have received in the last (GULP!) four weeks. Yes, indeed, it has been FOUR weeks since all this happened. Hard to believe. It seems longer, mainly because each day and week seems to bring a new adventure with logistics and knowledge.Anyway, Charlotte slept well last night and we had to get her up for a busy day. We got her AFO brace fitted for her leg (PURPLE!) and she got a new pair of orthopedic shoes too (pink and purple!). Then it was off to Children's Hospital where we got to go through all the intake stuff and then met with Dr. Montaserio (her rehab doc). He was most impressed with her progress, especially when she reached up with her left leg and kicked his hand! Still working hard on walking and release the grasp or using her left hand. It was very interesting that while we have been surrounded by people at MCV who knew all about brain tumors, PNETs, and all the other vocabulary with which we have become familiar in the last few weeks, few of the folks we talked to at Children's Hospital knew about her type of tumor. It made me realize how rare this thing is that happened to her...even at another hospital it is considered relatively "rare". When you are involved in something so much, you tend to forget that it's not a normal part of everyday life for other people. I constantly have to remind myself that it's not "normal" for your child to have a brain tumor...or even to be this sick for that matter. It starts to seem normal to me after a while. Probably weird but that's where I am...Anyway, we actually didn't have PT/OT or speech today. They had to set up numerous appointments so I know I am getting out the calendar and scheduling our world around CJ. Have to make sure we don't double book! Since they are having to bump us up around waiting lists (due to the urgency of her case), we actually have to go to some of the satellite Children's Hospital offices (West End and Midlothian) for some of our appointments. Not as convenient but that's ok. She will have PT/OT tomorrow, speech Thursday afternoon and they are also scheduling a NeuroPsych exam soon. This will be to get a "baseline" for her neurologic functioning and will probably take a few days to complete due to her age and the breadth of the exam.After getting home, she had a wonderful visit with Larson and Alexander and then mom tried to take a nap. Much thanks to Grandpa and Juanita for domestic chores and a yummy dinner. Dad came home and got her to sleep after much fussing. We just had to wake her up or would face another sleepless night. She's currently eating her dinner in her new cozy footie pajamas and listening to Dora stories. Does life get much better?At the risk of waxing on (and on), here is my moment of enlightenment for the week: I never wanted to be a stay-at-home mom. EVER. I always knew that I would need to go back to work after having my kids for many reasons. While the primary reason was probably income, the secondary reason was my sanity. I just would probably never be a great SAHM and needed that balance of home and work in my life. After I went back to work from my maternity leave, I never regretted it. Those first four months home with Charlotte were great but I definitely needed to go back to work and I never (ok rarely) felt guilty or wished I stayed at home.Fast forward to our new situation and oh how things change. Over the past week, I have wanted nothing more than to stay home and take care of my little Charlotte. I want to be the one who is with her (even when she drives me nuts), be there for all her doctor appointments, and be there to watch over her...Because of that, other things in my life are definitely slacking. Romp n' Roll has (unfortunately) taken a small back seat in my life and I have trouble motivating myself to get work done. Not to mention the time and fatigue factors...even if I did have the motivation, I usually have neither the hours in the day nor the energy.Anyway, I will end my mini-novel here (mainly because I must get back to my daughter) but if I seem distracted, antsy, grumpy, or in any other way not myself (yes, Roger, grump is NOT my normal self...) I am sure you understand why...Must run...Rachel

A quick addendum to the evening:
Charlotte was rather grumpy for a while (channeling her mom's energy???) but looking at recent get-well card arrivals and reading for a while really made her day. Her eyes completely lit up when she saw the homemade pictures from Kyle and Katie (Thanks!) and the homemade painted heart from Ketty's friend from church. Thanks, All! Then we read her High Five magazine (I think each story 3 times!). When she ran out of options, she said, "I want to pick some new books myself". I got her off the couch and she walked with me barely holding her hands over to her bookcase. She carefully picked out two selections and returned to the couch. We did this TWICE and each time her walking was more and more independent. By the end, she was walking with very little support and doing a GREAT job holding her hands out to grab a chair or the edge of the couch if needed. Yay!
BTW, forgot to mention in a previous post that the doctor has told us that we don't need the wheelchair. We can get by with our jogging stroller (and it will probably actually be more supportive). Because of this, I don't think we will need the wheelchair ramp after all (thanks to those who had offered).
Must rest and enjoy some time with my hubby...once CJ finally falls asleep!!
Rachel