I won!!!!! Rachel's Mommy Makeover

Today was yet another shining example of how things come together. As of 8 PM last night, Roger and I were in a bit of "panic mode" as we were struggling to figure out the schedule for today. There was lots going on and much to coordinate. Fortunately, my mom took Charlotte to PT, Roger, Emily, and Sam were able to cover the front desk at RNR where needed, and I was able to actually enjoy my makeover.The makeover event was fun. I went to Salon Del Sol at Three Chopt and they did my hair and makeup. It wasn't a crazy change. She just shaped up my hair and gave it some funky but classy highlights. Then I got to "glam up" for my evening at Shops at 5807. Thanks to the folks who came out! It was a nice crowd. The other two moms and I were sequestered away upstairs until the big reveal. It was just like being on one of those TLC shows!! Then we got to come out and see all our friends and family. In the end, it turned out that I received the most votes. YES!!!! I won!!! I was really surprised and touched. We joked with Kate Hall (at Richmond Mom) that we are going to get "shut out" of future contests since we seem to be winning them all!! We promised her we would use our fabulous network to help other deserving folks win future contests. Poor Charlotte was exhausted and practially falling asleep on Daddy's shoulders so we didn't stay at the event for too long. Thanks to everyone who voted for me and thanks to Kate Hall at RichmondMom.com, all the vendors at Shops at 5807, and all the stylists at Salon Del Sol. The woman who did my hair came in on her day off and really treated me well!! I will hopefully post pictures soon.Aside from the great outfit that I already got, I also get a family photo session, lots of gifts from "By Invitation Only", and a few other fabulous gifts.In other news, I spent Monday and Tuesday at Sweet Briar College near Lynchburg presenting at the Central Virginia Training Center's annual conference. This was such a nice change of pace for me. As many of you know, this is what I did in my previous (read: before Romp n' Roll) life. I love sharing my knowledge and expertise in the area of special education with others. My presentations (four over two days) were very well received and I enjoyed doing them. I also got to see quite a few people with whom I used to work so it was a nice time overall. Do I miss it? Kind of...but I also love what I do now. I just want to do too much. Charlotte is doing well. We have OFFICIALLY run out of insurance-covered visits for PT/OT so we are very grateful for all of the money that has been raised for us so far. At $90 per visit (twice a week), her therapy bills are going to add up very quickly. That will be about $720/month! (And some of you thought daycare/preschool was expensive...that's for just 2 hours per week!!!)Charlotte continues to tolerate her medicines well. We meet with the doctors again tomorrow to check labs, etc. and prepare for next week. We are back to the Velcade and add in a new drug (Valproic Acid). One month from now, we will have another MRI too so the countdown for that begins. I can't believe it's October already!!! It seems like just yesterday I was sweating my tail off in Houston and now we are greeted with this glorious fall weather. Ok, I must end this before it becomes a novel and try to settle in for the evening.Rachel

Thanks to everyone who sent me encouraging notes and thoughts after my last post.

Thanks to everyone who sent me encouraging notes and thoughts after my last post. I do appreciate it. I know I need to give myself a break and try to take things one day at a time. It's a struggle. It actually helps just to vent and lay it all out here on CB sometimes. Wow! The last few days have been SO busy and I don't see the pace slowing down any time soon.Roger and Charlotte left for NM/CO at about 4 AM on Friday. Roger has not posted pictures or an update yet because they have kind of limited internet access where they are, but I understand they are having a great time. Charlotte was (as usual) a great traveler. They were on 3 planes (Richmond --> Atlanta --> Denver --> Durango) so it was a long travel day on Friday followed by the Head Shaving Party where Aunt B lost her locks. I'll let Roger provide the details.Meanwhile, back at the ranch, I was teaching my tail off at Romp n' Roll Friday morning. Then my mom, Kolbey, and I had lunch at Casa Grande and I went back to RNR for the afternoon shift. Home for a light dinner at 8 PM, watched a movie and went to bed. Then back up this morning to teach. Home to do some "domestic stuff" and I will be going back to work this afternoon for an evening private event at RNR tonight. THEN I get to teach Roger's classes tomorrow morning, work a 4 PM birthday party and then drive to Lynchburg. I'm presenting at the Central Virginia Training Center's annual conference. Two presentations each on two days (one on Music Therapy and Autism and another on Augmentative Communication). They are both basic presentations on topics I've presented many times before so I'm not that nervous. Kind of excited about putting on my therapist hat again. I was asked to do this back in March or April and that seems like SOOOOO long ago. It's also a paid gig, so that's a nice plus. I'm just not enjoying all the coordination that goes along with it. Having Roger and Charlotte out of town for the weekend (and overlapping on Monday as they return from Colorado) has taken a bit of extra energy and coordination.Anyway, I no sooner return from that event on Tuesday then we're back into RNR schedule and Charlotte's appointments to the doctor, child study meetings, therapy, etc. I'm feeling a little harried! Thank goodness my mom has been here to provide some relief. So I just wanted to give everyone a quick update before I get a nap and head back to work. More news to follow...Rachel

Ok, first the bad news: Miami Hurricanes are losing to the VT Hokies. Rough game in the pouring rain. Mah!BUT....I got a call from Kate at RichmondMom.com today. I'm one of the three lucky finalists for the Richmond Mommy Makeover (yay!). Kate joked that we are just sweeping the Richmond Mom contests this year. We'll have to find something for Charlotte to win...she's next!Anyway, I will be getting a new outfit sometime between now and Wednesday (possibly tomorrow) from Fiero Bella and then the actual makeover happens Wednesday afternoon. EVERYONE who is able is welcome to come out to the Shops at 5807 (5807 Patterson) at 6:30 on Wednesday 9/30 to see my "new" and updated look. There will be wine, appetizers, giveaways and all kinds of fun stuff. I think they're doing a raffle for Safe Place so it's all for a good cause. Now Roger and I get to figure out the coordination craziness that will be Wednesday because I think we will have to shuffle around some appointments....we'll figure it out, though. Thanks to everyone who voted for me. I really appreciate it and I'm looking forward to seeing what they "do" for me.Rachel

My turn. Lots on my mind. (Rachel)

My turn. Lots on my mind. This could be a mini-novel. We'll see.First of all, a very sad note. Our good friend (and chiropractor), Anna, lost her mom to cancer yesterday. We are thinking heavy thoughts about her today and wishing the Madland family peace and comfort. You can pass a note to the family at www.caringbridge.org/visit/joanmadland Charlotte had another good day yesterday. She worked very hard at physical therapy where they introduced the Wii Fit! She tried some of the balance games where she had to rock from side to side in order to get marbles in a hole, hit soccer balls with her head, and catch fish (as a penguin) on an iceberg. She also did the ski jump which worked on her bending her knees, holding the position, and popping up (this was very challenging) and also worked on walking. I wonder if there is a Wii in our future? I'm not usually much for video games but I had to admit it was cool and really seemed to motivate her!Yesterday evening I ended up spontaneously meeting a friend for dinner. She had posted on Facebook that she was looking for someone to have dinner with her down at the Iron Horse. I realized I was available and I thought, what the heck? We had a great time talking about everything from parenting to jobs to relationships. I've been having a rather rough time lately and it's been kind of hard to nail down the root of my problem.I guess if I had to boil it down to one word it would be "motivation" but that doesn't really seem to capture it completely. I think I have finally reached the limits of myself. For those of you who know me well (and some of you have known me a L-O-N-G time...), you know that I have always been Type A, motivated, efficient, and hyper-organized (maybe even to a fault). I have always been the kind of person who could be super-productive, met deadlines, got stuff done, and was two or three steps ahead of the game. My house may not have been immaculate but it was usually organized. I could work full time with even a few part-time gigs on the side and still have time to invest my energy in church or other service organizations (usually in some kind of leadership capacity). Yes, that was my life before and while it did take effort of a certain sort, I enjoyed it and I THRIVED on that busy kind of energy. It felt natural to me and that's just how I lived my life. It wasn't effortless but it was relatively easy for me. Lately, not only do I not seem to have the "time" to do these things, but the motivation and the energy just isn't there. Piles of mail sit unopened. Emails go unanswered. Tasks on my to-do list wait until tomorrow (and the next day, and the next...). I get distracted VERY easily (damn you, Facebook!). Some days all I want to do is vegetate on the couch. Part of me tells myself (and others tell me) that this is "normal" given our life situation and everything that we have been dealing with for the past 8 months. Part of me tells myself that I'm being too hard on myself. I should give myself a break. These things (in the grand scheme of it all) are relatively unimportant. And yet, I can't make myself truly believe it. It makes me angry (at myself) and I get frustrated. I want my old life and my old "self" back. I'm tired of living in crisis mode. I get frustrated at the fact that I've gained 20 pounds in the last 8 months (yes, ladies and gentlemen...20 pounds!!!! UGH!!). My body is in constant anxiety mode and not only craves comfort food but doesn't want to lose the pounds, even when I DO eat healthfully. I get frustrated that I'm tired all the time and when I try to sleep my mind runs in circles. I get frustrated at having no real schedule. I can't seem to figure out what we will be doing two weeks from now, let alone 6 months or a year from now. Roger and I were trying to look at the calendar and find ONE day in October to "get away" and we couldn't do it. Not even ONE day when we don't have something going on for work or for Charlotte. CRAZY. Work does help and I love my job (I say quite often that I have the BEST job in the world...i'ts true) My life shuttles from work to Charlotte's therapy or doctor's appointments and then home. And when I get home all I want do is sit on the couch. I have all these things that I want to accomplish but they just don't happen. I couldn't even begin to think about where we would be if we didn't have the fabulous network of family and friends who have been taking care of us. We continue to get great meals delivered to our home on a regular basis (Thanks!). We continue to have family visiting us regularly to help with...anything we might need (Extra Thanks!). We continue to get sweet notes or gestures of motivation and comfort in the form of letters, cards, and small gifts (Oh, thank you!!!) and I can't even begin to imagine where we would be without all these things. I would say "I want my old life back" but I know that is never going to happen. From this point forward, life will always be about having a child with cancer. Even once she is a SURVIVOR, our lives are forever changed by this experience and we may never look at our lives or our priorities the same way again (I know I am already changed in that respect). So that's where I am right now. I guess my purpose in this post is to say if I seem distracted or forgetful or if you sent me an email weeks ago and I never responded or if you never got a thank you note for some awesome, wonderful thing you did for our family please understand that it is not meant as a personal slight. On that note, I must get on with my day and get ready to go to work. Busy day ahead...and a busy weekend as well.--Rachel

I posted on the Facebook site that Charlotte was simply amazing yesterday and she was. I continually draw inspiration from her determination.It's all little things, nothing Earth shattering but it adds up.Yesterday, a special ed teacher from Hanover County Schools came over to evaluate CJ for possible services through the school system. She talked a lot like Rachel.Charlotte was a little standoff-ish at first bit "Miss Terry" was very good at what she does and it took all of 3 minutes for Charlotte to be jabbering away at her.They did some hidden pictures, colors, counting, drawing, walking, stacking; but all camouflaged in play and Charlotte was amazing. Her physical limitations were clear and that's what we needed to establish. Her communication, vocabulary, and cognitive abilities shown brightly and I'm thinking Miss Terry left with a very clear idea of what we need. There's a meeting planned for next Wednesday to look into the options more deeply.After that, Charlotte and I went down to Romp n' Roll. She went to Good Sports Class and I did errands. She was all over the gym and was social with the members. She also spent a good amount of time pal-ing around with Miss Samantha.
When I got back to teach the afternoon classes, she was hanging out in the lobby with Mommy wearing a princess tiara with pink fluff on it getting ready to go into Princess Class. Very adorable.
THEN she came into my Two For 2s class and tried everything in the gym including climbing up the rock wall and sliding down the other side. I helped her quite a bit but she didn’t back down from anything and never gave up. She sat down on the red floor, got back up when it was time, picked up things from the floor without help, etc…I was immensely proud of her. She finally started to peter out around the second art project.
The off to home. She’s been asking to sleep in her upstairs room and although it has made me nervous, we put her to bed up there. She’s done great both nights and I’ve only put little obstacles in her way to alert us if she should get up in the middle of the night. The fact that she’s been completely out all night has helped.
The thing that made my night was when I went in to give her some medicine. She fussed a little like usual but afterwards, when I told her I’d stay with her for a bit, she gave me the biggest smile I’d seen in quite a while. Daddy is still a sucker for that smile.
This weekend, we go to Farmington, New Mexico for the cancer center walk and the “Aunt Soon-To-Be-Not-So-Hairy Head Shaving Party!” Should be a great time.

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.

No new growth

Good News!!!!I just got off the phone with Dr. Khan. He (finally) got the scans from MD Anderson. He and Dr. Tye looked at them and he also spoke with Dr. Wolff. They all concurred that there does NOT seem to be any new growth. Any abnormalities, swelling, or growth that appear in the MRI were either there before or may be a result of things settling after the radiation. Furthermore, they believe that with the addition of the new drug (Velcade) to her protocol, we should just continue with things "as-is" and do another MRI in about 2 months (around the first of November) to assess progress. Yay!Can I say it again? YAY!! Huge weight lifted off our shoulders.We have had a VERY busy week between long days at Romp n' Roll, shuttling Charlotte to her many appointments, and the day-to-day business of life. Charlotte and I made it to the second half of the RMC Field Hockey game and then we went with them to Estes (the dining hall) for dinner. Charlotte wore her team jersey and hat and all the girls were excited to see her. It was a very fast-paced, intense game that went into overtime. Their opponent (Christopher Newport University) is outside their conference and pretty highly ranked so the fact that they lost in overtime, while kinda sad, was VERY GOOD for them as it means they are improving and ready to take on some of their conference opponents. Good luck, Macon girls!!! We will miss their next few games as they are all "away" but looking forward to their next home game in October.Even with the hectic schedule, it feels really good to be settling back in to the closest thing I can consider a "normal" life these days. Charlotte has been hanging out at Romp n' Roll more and that has been a blessing. It's great to see her participating in classes, playing with kids, and being a "kid" again. I think that's it for now. Granny (my mom) is on her way to Virginia right now. In fact, her plane may have already landed as we speak. Uncle Kolbey picking her up from the airport. It will be great to have her visit for a few weeks. Got to get back to work but I'm sure we'll have more updates soon. Rachel

Waiting for the Son of Epic

It was a VERY busy weekend so I apologize for the lack of update. I understand that Roger's "EPIC" is still in process. Please be patient. I do not think, as my aunt inquired, that we will be waiting for years a la the Harry Potter Franchise but let's hope the anticipation is worth it. (ha ha!!)Anyway, I did have a very nice birthday and if anyone local to Richmond has not checked out the Goochland Drive In, you should. It's great family fun!!! I also got some wonderful birthday messages and wishes throughout the day and the folks in NM sent me a BEAUTIFUL flower arrangement that surprised me on Saturday. Saturday was super busy. We had an open house event at Romp n' Roll. Then, while I wasn't supposed to stay for the afternoon parties, I ended up needing to help because of an unexpected illness from one of our staffers. Roger had jetted off to Williamsburg for a Romp n' Roll appearance at a FACES event so I helped the birthday staff. Charlotte was a DREAM. She sat and read books in the lobby during both parties. She also had some special visitors who stopped by the Klauer organized bake sale. She was great!The bake sale was a HUGE success and thanks to all who showed up. I understand they made $500 for pediatric cancer research! Yay!Anyway, after Romp n' Roll we zipped over to the Inflatable Palace for Anja's birthday party. Charlotte got to see lots of her preschool friends and I think she had a good time. Roger even suited up to try the velcro wall! Hilarious!We crashed Saturday night. Sunday was a picnic at church. It was so nice to see everyone as it had been MONTHS (literally) since we had been able to come to church. The weather was beautiful, the food was yummy, and the fellowship was divine. Then I trotted off to do some paperwork at Romp n' Roll. Roger and Charlotte met up with me there and we all trekked to the Children's Museum for the Kourageous Kids ceremony. Charlotte was honored by ASK as one of about 22 (?) Kourageous Kids who have been receiving treatment for cancer at MCV during the past year. She had her picture taken by Commonwealth Photography back in May and all the kids' pictures are on display at the museum for the rest of September. Please stop by to check it out! The event featured ice cream, popcorn, the Maggie Walker Governor's School Jazz Band, clowns, face painting, and a lovely ceremony honoring the kids. We got to see some of the "regulars" with whom we commisserate from week to week in clinic. Then the kids got to play in the museum for about an hour. Back home Sunday night to do some prep work for the week ahead and then we all crashed. Now it's off to OT, clinic, and work...busy day ahead.Before I forget, don't forget to register NOW for the ReeseStrong 5K and Charlotte Reynolds Lollipop Kids Run on October 24th! You can register at ReeseStrong.org OR we have registration forms and information at Romp n' Roll. Any kids who register by October 1st will get their NAMES on the t-shirt!!!Gotta run. Busy day ahead....