Wednesday, September 30, 2009

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, 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

Saturday, September 26, 2009

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 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

Thursday, September 24, 2009

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 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

Wednesday, September 23, 2009

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.

Sunday, September 20, 2009

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.

Thursday, September 17, 2009

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

Monday, September 14, 2009

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 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....

Saturday, September 12, 2009

Rachel's Birthday Date

Super quick update:

We went out to the Goochland Drive-In Theater for Rachel's Birthday Date. Great place. We saw Ice Age 3 and Star Trek. We got there very early to get the whole drive-in experience including playing on the playground which was always such a cool thing to me when I was younger.

Cha​rlotte had some trouble navigating the playground and I think at one point the frustration of not being able to do what all the other kids were doing set in. She had a small meltdown and then was ok for the rest of the night.

She totally loved Ice Age 3 and convenientl​y fell asleep right near the beginning of Star Trek (which, did I mention, is UNFREAKINGB​ELIEVABLE?!​?). That saved me from having to walk around the concession area with her for the entire movie to keep her from seeing all the scary/viole​nt parts.

So we had a very good time and Rachel's Birthday, which had the potential of being "weighty", ended up being a very pleasant day.

"Discov​er Romp n' Roll" is today 9-12noon (it's free) and the Klauers and the Reesestrong Foundation folks are having a bakesale in front of the store starting at 1pm. Please come by if you're local.

Friday, September 11, 2009

Happy Birthday Rachel

A bit of diversionary satire...Ah, 9/11: That National Holiday when we wake up early to put colored eggs into our stockings hung by the fire. We fast and pray all day because if we see our shadow, there are 40 more days of unleavened bread. When it gets dark, we dress up in costumes and go door to door giving candy hearts and chocolate to one another. Then we all get together to eat turkey, drink green beer, and spin the dreidel. Finally the evening ends with a big party where we watch a big ball drop at midnight. We sing the National Anthem as the forks blaze in the sky.And, oh yeah, it's my BIRTHDAY (can YOU spot all the holidays rolled into one???)That is all for now. Hope everyone has a good day. Rachel

Thursday, September 10, 2009

New drug, Velcade

Hi everyone,Not too much in the way of updates but here is the latest:Charlotte got her new drug (Velcade) yesterday. It took a while to get everything set with the meds and the infusion but once they got everything they needed at the clinic, the whole process took about 5 minutes. The biggest side effect for her right now seems to be sleepiness. She fell asleep around 5 PM yesterday and woke up about 7 PM (just as I came home from work). Then she was up until almost 2 AM and at 11:40 AM on Thursday, she is still asleep! So needless to say, her schedule is a little "off". Otherwise, she seems to be ok. The word from the pharmaceutical company that administers this drug is that successive doses have to be given at least 72 hours apart so she will get the next dose on Monday and then probably Thursday of next week. Then another the following Monday. I am stil nursing my infection/cold. The antibiotics are hopefully doing their thing. The cough is S-L-O-W-L-Y fading and I still can't hear anything out of my left ear so my tube must be completely clogged. Joy. I am slowly getting some energy back so that is good. We have a busy fall session coming so I must convalesce quickly!!Some other news is that Three Oaks Montessori has given Charlotte "Honorary Student" status. They are going to include her in as many activities as she is able this year and are going to try to help us with meals as well as bringing her baskets of activities at home from time to time. We are very grateful to Kim, the director, for this offer and hope that we will be able to have Charlotte participate as much as possible. A few of Charlotte's friends from her old "Montessori House" are at Three Oaks so we hope this will be a good transition. Plus they are trying to get a Romp n' Roll 2 Go mobile program going at the school so it should be great all around!Thanks to Meredith for bringing us dinner yesterday. It was YUMMY!!! (and healthy).So she has PT this afternoon. Roger went in to work this morning and I have the PM shift. Busy weekend ahead. No news on the MRI but we will let you know when we know. Rachel

Tuesday, September 8, 2009

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: 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.

Monday, September 7, 2009

Here’s your epic Part 1

Here’s your epic Part 1:On Thursday, July 30, Chicago White Sox pitcher Mark Buehrle pitched a perfect game. He had to rely on a mindblowing defensive play from one of his teammates near the end but he did most of the work. In the Sports Illustrated article that chronicled the event, writer Lee Jenkins put the feat into perspective this way (the best way to put any great baseball moment into perspective) - with stats:In baseball history, starting in 1900 as far as most historians are concerned, there have been 263 no-hitters but only 18 perfect games (27 up-27 down). That’s out of 779,118 starts which is .0023%!That’s pretty special and worth celebrating. I’ve been officially amazed by it and have been thinking about it a lot, lately. I mention it here because it has kind of framed my mindset recently. I’ve been narrowing down the things I’ve been celebrating lately, trying to get the most quality out my everyday experiences. I’ve been loosely following the various sports I like and trying, as always, to find new musical wonders but the sports have been slowly fading in my mind the last week or so and I’ve ramped up by musical exploration. I’m going to miss most of the UM/FSU football game tomorrow and I’m ok with that. Yeah, I know, sacrilege! I have, however, discovered a new appreciation of older singers/instrumentalists I used to not be able to stand. One being Judy Garland.My seemingly incoherent babbling has a purpose. Last week, we thought we had a pretty good handle on Charlotte’s cancer, her proton radiation treatments (conducted at world renowned MD Anderson Cancer Center in Houston, Texas) were over, we were all finally home and ready to begin the rest of the customized chemotherapy developed by researchers at the same MD Anderson.We got a call from the folks at MCV confirming an MRI appointment scheduled for early Wednesday morning and we just assumed it had been ordered by Dr. Kahn or Dr. Tye since we had an appointment in the Nelson Clinic later that day. There we go assuming again.So I scoop up Charlotte early Wed morning and we go get an MRI. As usual, when they’re not familiar with a patient, medical professionals tend to make their own assumptions and when the anesthesiologist mentioned starting an IV in CJ’s arm, I said, “Oh no you’re not. She’s got a central line.” The doc said, “We still like to have it available. We’ll do it while she’s out and cap it before she wakes up; she won’t know a thing.” I was confused as to why they would need to do this and told him I really didn’t think that was necessary. They’ve never done that to her before. Finally I showed them her Hickman double lumen (sp?) line and the lightbulb went off. I can’t tell you all how many times we have had to head off doctors and nurses diving for the needles. Shouldn’t these things be written down in her chart somewhere? I will say for the thousandth time (I’m sure it’s not the last) be your child’s strongest advocate!I also saw the Klauers before they got started. (congrats on Reese’s clean MRI!)After they took her in, I took the time to head up to the 7th floor to see one of our Romp n’ Roll employees, Lindsay, who got into a car accident and was recovering on the “older kids’ ward” of the 7th floor (that’s the infamous ward where CJ caught the nurses lying to her about medication in her chocolate milk).Lindsay’s hand was seriously injured and she’ll be undergoing several surgeries in the next few months. Her whole family has had a very bad run of medical situations in the last little while so they could use a boost of positive energy. If you would like to help Lindsay, or more importantly, her mother Laura, let us know here and we’ll pass it along. They don’t have a CB site yet but I’m pestering them to start one.So I found out Lindsay was hanging in there and headed back down to the recovery area. I timed it just right and they were just bringing her out when I got there.CJ woke up without any complications and after a little chocolate milk, we headed down to eat, where else, at Chick-fil-a! We met a woman expecting her second child (a surprise baby!) and we talked a bit. For some reason, I found it very refreshing to talk to someone who was at MCV for a very different reason than us. Her situation, risk for gestational diabetes, was almost novel (although I don’t want to belittle it at all). It’s just that is was nice to talk to someone about something other than cancer for a change.Next we went to the Nelson Clinic and signed in nice and early. Charlotte settled in with a few books and I pulled out the laptop. When they called us in, after vitals, we popped a DVD in the player and waited for mommy and Dr. Kahn. Mommy arrived not long after we went in. Dr. Kahn’s timing was kind of bad. Charlotte normally jumps for joy when she sees Dr. Kahn but this time she was so engrossed in the DVD (Strawberry Shortcake) that she didn’t want him to come in.It actually wasn’t a problem because, much to our consternation, we were greeted with complete surprise when we told him about the MRI. “You had an MRI this morning?!?” So off he went to look at the MRI real quick.Here’s where everything starts getting mucky. Dr. Kahn came back in after a little while and says that after looking at this MRI and the post 3rd surgery MRI, he can see there have been changes. Here’s your insight into the world of “Dr. Speak” for these types of situations. When they say “changes,” they don’t usually mean changes for the good. He couldn’t find the July MRI we did at MD Anderson, (they probably never sent one to MCV) so he didn’t have that one for comparison. Compared to the May MRI, parts of the cancer have grown. The thing is, it might be that the cancer grew more after the May MRI and the latest MRI might show that it has actually shrunk since then. If so, that’s good and we can hope the updated chemo protocol (which seemed to have a positive effect earlier) will finish the job.If the three MRIs show steady growth even through the proton radiation treatment, well, that’s bad. Very bad. The other thing is, Dr. Kahn only had a small amount of time to look at the scan and Dr. Tye wasn’t even a part of the conversation, so there was very little information to be had which made us feel like we were being left in the dark. That’s not the best state in which to leave our fertile, imaginative minds. I actually had the stereotypical “kicked-in-the-gut” feeling you hear about and the “all over body ache” was back.It certainly wasn’t what we had hoped or expected. Did the super hi-tech proton radiation, the hottest thing in the world of cancer treatment, work at all? Was the time in Houston a gigantic waste? Did we do all that for no reason?We felt so down for a bit that I didn’t talk about it with anyone I didn’t have to.The next day, Rachel was feeling sick with a cold so we switched Romp n’ Roll shifts. I went down in the morning to help with camp and she came in the afternoon to do Open Gym (less chance to get kids sick).Gotta admit, camp was rockin’! We had 20 kids all doing mostly what we wanted them to do. The co-op band pics on Facebook are a testament to that.Here’s also where my new appreciation of things really shows up. The co-op band “event” is not something that will change the world, just like a perfect baseball game won’t, but it was something that will be hard to match and, I think, worth remembering. I keep looking at Charlotte in those incredibly precious moments I get to spend with her and trying to devour everything about her. Every moment with her is a bonus that I cannot adequately describe in words and I want to remember them. I want to sear them into my memory no matter what happens.After camp, Charlotte and I went back down to MCV to see Lindsay and her mother, Lauren, who, despite being in a wheelchair at the moment, has been staying with her at the hospital. The night before, Charlotte drew her a picture of some food which we presented to Lindsay when we got there. Then we popped in Finding Nemo and they watched it together on her bed. Once CJ was settled, I went back down to the Nelson Clinic to be the proverbial squeaky wheel to make sure things were in motion as far as the July MRI was concerned.When I went up to the window, I thought I clearly explained to the woman at the reception desk/window that I wanted to leave a message for Dr. Kahn, making sure the MRI ball was rolling. She was obviously distracted and not listening to me and was confused about why I was there. “No I don’t have an appointment, I just want to leave a message for Dr. Kahn.” When I saw him through a window, I mentioned, “There he is right now” and she became defensive saying that he was with a patient and he wasn’t available. She also made me feel, and not for the first time, that I was somehow imposing on her by being there. I sometimes get that vibe from the other receptionist as well; almost like we’re kids being pulled into the principal’s office for breaking some rule. I can only think that the “normalcy” we’ve mentioned before that comes after being/working around very NOT normal circumstances for an extended period of time has clouded their perception of why they (and the parents with whom they interact) come to the Nelson Clinic in the first place. Just lately, I’ve been a lot less reluctant to let people know what I think (not that I was that shy before) and I may be something of a problem parent if I feel something needs to be said.Anyway, after getting the message straight, she took the piece of paper on which she was writing back to Dr. Kahn and of course, he came right out to talk to me. (In my mind, I’m childishly sticking my tongue out at the receptionist. It’s amazing what you’re reduced to in these times.) He told me he had talked to Dr. Tye and that he concurred with Dr. Kahn’s opinion. About the July MRI, he said the best thing I could have heard: Joanne is working on it. We’ve mentioned her before. Joanne is Dr. Tye’s right hand nurse and she is a force. If she’s on it, it will get done.After that, I felt a little better and went back up to Lindsay’s room. They were still watching the movie and I, unfortunately, had to do the nasty trick of skipping a few scenes to get the movie to end. We had an invitation to meet with the Randolph-Macon College Women’s Field Hockey team at the end of practice and eat dinner with them. We were getting to the point where if we didn’t leave very soon, we would be seriously late.The drama was minimal, though, so in a small amount of time, we were zooming north on 95 towards R-MC. We got there just as practice was ending and we got to meet the team and “warm down” with them. Charlotte was being her typical shy-at-first self but I was coaching everyone how to ask her about her favorite colors, her age, favorite restaurant, etc…and before too long, she was opening up a bit. At dinner in Estes Dining Hall, she sat in my lap and kind of didn’t want to do much but I needed something to eat, so I asked the girl sitting next to me to hold Charlotte while I ate something. CJ was ok with it and the girl happened to be Lindsay Walker, one of the co-captains of the team. I’m not sure what it is about Walker (as everyone calls her), but Charlotte just fell for her. She snuggled up to her and they seemed to bond very quickly. So I ate and it was pretty good.I also got to see a couple of old students of mine from when I taught there which was really great. I certainly miss it. Maybe someday…Rachel was still not feeling well by Saturday so I taught her morning class. Fortunately, she at least got to come by to see everyone since it as the last class of the session. It was nice because some of the kids will be going to preschool or taking a break until spring and it will be a while before we see them again. Big changes can take place in that amount of time.We all headed back home for a bit to rest and recuperate before CJ and I had to leave for the season opener for the R-MC field hockey team. We got there just before the half and stayed through the rest of the game. I’ve talked about the rest. It’s a great thing the Friends of Jacyln organization does.Somewhere in all the mess, Rachel and I had one of THOSE conversations. It was in Chick-fil-a with Charlotte sitting beside me eating her chicken strips dipped in Barbeque sauce. We had both been stewing over the last conversation with Dr. Kahn, thinking dark thoughts, and going through worst-case scenarios in our heads. I think one can’t help doing that sometimes and I do it all the time no matter how good things are going. I actually it’s one of the things that has helped me cope so well so far.So there we are in Charlotte’s favorite restaurant, speaking practically about “what-ifs.” By far the most morbid but functional conversation we’ve ever had. Neither of us is the kind to shy away from difficult subjects and we both think it’s wrong to not think about possible outcomes simply because it’s hard to face. Denial has wreaked its own havoc on the world throughout history. I know, so has “the sky is falling!” mentality. Try not to worry. We’re definitely not there yet.In our various conversations lately, we’ve established that when CJ was first diagnosed, she was in the 80%+ survival rate category. When the cancer grew through the first couple rounds of chemo, we figure she dropped down to maybe 60%. If the scans show growth through the radiation, she reaches the 50% or less group. These are horrible things for a parent to have to think about but we wanted everyone to know where we are right now. We’re not good. We’ve had some very difficult days since last Wednesday.We have by no means given up hope. All this darkness is mostly because of what we DON’T know. We’re actually kind of mad at MD Anderson because everyone was supposed keep everyone else in the loop and it didn’t happen with the July MRI. Having to wait for MD Anderson to get the scan to MCV is the worst thing right now. Who knows, the scan could show all kinds of progress. We just don’t know and of course, that’s where most fear comes from, right? Fear of the unknown? As before, if we had clear answers/options, we wouldn’t have nearly the stress level.This is actually only part of what I want to write but it’s already overwhelming to read. I’ll post another update later. Please keep the positive energy flowing.Love,Rog

Sunday, September 6, 2009

There's a massive one coming (fair warning)

Very quick update. There's a massive one coming (fair warning) but it's taking too long to get finished so we thought we'd at least let you know the events of the past couple days.The Randolph-Macon College Ladies Field Hockey team officially adopted Charlotte yesterday after their game with Washington College. They read an official welcome complete with background of her situation, gave her a bag full of gifts (I understand there is at least on more on the way), had a big hand-painted banner reading “RMC FH (heart) CHARLOTTE!”, and even had a cake with Charlotte’s name along with the Yellowjacket and all that. There are pics on my Facebook site.Today, we traded off entertaining/working with Charlotte and organizing the house. Rachel has been under the weather with a nasty ear infection but a dynamo in the house. She also worked with CJ a while making her identify aspects of the puzzles that have gotten too easy for her.I taught her the phrase, “Don’t give up!”We then went to Cracker Barrel for dinner which was nice. We’re spoiled in that CB is usually beyond reproach for service and food. Tonight they weren’t on their “A” game but it was still pretty good. We even had dessert.Tomorrow is Labor Day so nothing medical going on. I have rehearsal for Southern Horizon and the U. of Miami/FSU game is on (I’ll keep track on the phone). GO CANES!!!Tuesday and Thursday are PT/OT days and Wednesday and Friday are clinic days to start the new drug,Stay tuned for the epic.

Thursday, September 3, 2009

Fighting a cold

There really isn't much to report but I'm so addicted to this Caring Bridge site that I have to write something before I go to bed...The biggest news is that now I'm fighting some kind of cold/bug. I don't think it's very bad and I'm (hopefully) coming off the worst of it already but last night I was achy with a sore throat. At least no fever. I didn't sleep very well but Roger was very nice to me and went in to teach camp (I was supposed to be on morning shift). This allowed me to sleep and convalesce a bit, especially since Charlotte slept till after 10 (!!!).We went down to Romp n' Roll at about noon and took Roger over to Chick-Fil-A for lunch. Charlotte has become quite the "regular" around there and they hadn't seen her for a while so Tim (one of the manager/franchise trainees) and Linda (another adoring fan) took extra good care of us today. Then we did the trade-off and I went to work while Roger took Charlotte down to MCV to visit our employee Lindsey.I don't think we have had the time to update everyone on Lindsey. She is a Patrick Henry high school senior who has been working for us at Romp n' Roll since the beginning of the summer. Anyway, she's having a rough week (to say the least). Her dad was in a bike accident on Friday and then SHE was in a car accident on Monday and has a crushed hand that will require multiple surgeries. Otherwise she seems to be ok but Roger has been able to go by and visit her twice now and today she and Charlotte brought a movie that they watched together. Please add Lindsey and her family to your prayer list!! While at MCV, Roger did some "nosing around" just to see if there was any progress. The only news is that Dr. Tye also saw the scans and agreed with Dr. Khan with what they saw on the MRI. The ball is in motion to get the July scans from MDA. That's all we know.From MCV, Roger took Charlotte over to RMC where they met the Yellow Jacket Field Hockey Team that has recently adopted CJ as part of the Friends of Jaclyn Foundation. They had dinner with the team at Estes Dining Hall and Charlotte really seemed to bond with some of the girls. It will be fun to have her involved in their games. They were all wearing Charlotte bracelets and gave her lots of positive attention. Thanks to all of you for your thoughts, concerns, and messages in the past 24 hours. Roger and I are dealing with the ambiguity as best we can right now and doing as best we can to keep our spirits up. It's a very bizarre time for me right now emotionally and I can't really describe it. So I won't even try. Lots of thoughts in my head. Some good. Some not so good. Just be patient with us if we seem distracted or not really in the mood to talk about it. I guess that's mostly where we are.Signing off so I can get some sleep...Rachel

Wednesday, September 2, 2009

The word of the day is inconclusive.

The word of the day is inconclusive. I don't like that word. Our day started early and has been pretty hectic. The MRI went off pretty much as planned after some early insurance confusion. Also, for some reason the anesthesiologist didn't realize she had a central line and wanted to give her an IV. Fortunately, Roger intervened!! Once the MRI was done, they headed up to the clinic. I taught my 3 morning classes at Romp n' Roll. It was great to see the kids and my great staff again! I met up with Charlotte and Roger about 1 PM and Dr. Khan came in to greet us a little after 1:15. Overall, he is impressed with her progress. We went over all the vitals (eating, sleeping, pooping, etc.). Talked about the H1N1 stuff. She can get a regular flu shot but cannot get the H1N1 vaccine due to her suppressed immunity so don't be surprised if we are ultra germophobic and hermetic in a few weeks/months. This may be the first year we all get flu shots. We don't normally and none of us ever get the flu. I think she's due for a few other vaccinations as well (that she should have gotten at her 4 year well visit) but they may have to wait.Now to the MRI results: First of all, Dr. Khan was kind of surprised that we had an MRI today, which was kind of weird. We thought HE was the one that scheduled it. I am not positive but I think that this MRI was scheduled a long time ago (before we went to Houston) and was never taken off the books and then it just coincided with our return to Virginia. In any case, he looked at the scan and compared it to the scan from her post-op MRI on May 29th. Unfortunately, they don't have the July 14th MRI from MD Anderson. We thought they did. The problem is that the MRI does show growth from the May 29th scan to today's scan. Dr. Khan needs to know, however, if there was MORE or LESS growth in the July scan. If there was a progression from May to July but there has been less growth (or stabilization) between July and now, that is good. That means that radiation, chemo, something is hopefully working. If there is more growth now than there was in the July scan...well...that's bad. Really bad. Unfortunately, Dr. Khan didn't have much more to tell us today but we did discuss starting her new protocol next week and we are hoping to have some answers from MD Anderson (the July scans) by the end of the week. Roger and I are frustrated and disappointed. This is definitely a case of "no news" NOT being "good news". You all know how much I hate ambiguity in these situations and the fact that there wasn't news of LACK of growth in any way is a pretty bad omen to me. In the meantime, I need to try to focus my energy on something productive as there is MUCH to do. Unpacking, organizing, making PT/OT appointments. Lots to do.Since my post last night, we have realized that our neighbors decorated their mailboxes and porches with pink and purple ribbons and balloons. Our house was decorated as well. The "welcome home" was very touching. We also found some food that had been "mysteriously" left in our refrigerator and I understand more is on its way this afternoon. Thanks! Roger is off to work for the evening and I'm here with the princess. We'll keep you updated as we know more.

Tuesday, September 1, 2009

We're BA-ACK!!!

We're BA-ACK!!!A quick update before we all collapse. This has been a LOOOONG day. Charlotte slept in this morning (till after 10!!) while we cleaned up and packed up our room. We took three boxes to the post office (one of which we sent media mail as it was full of DVDs and books!). We came to Texas with three suitcases and left with FIVE (not counting our carry-on totes, the stroller, and the car seat). I have never traveled with that much stuff in my entire life! Actually used the skycaps!We said our goodbyes to our friends at RMH and I think Charlotte was a little upset by it all. She didn't want to say goodbye so we just said "see you later". All our recently made friends have carepages or caringbridge sites so I think we will all be able to keep in touch. I'm hoping a bald chicks reunion will be in the works within the next year. After some lunch and our final checkouts, we headed to the Museum of Fine Arts for a few hours. We only got to see about 1/2 the museum (I guess the second half will wait until next year) but it was one of the best collections of contemporary art I've ever seen. Very creative and interesting art (plus some "weird stuff"). There was also a beautiful collection of Indian, Korean, and Indonesian art. After that we headed to the airport. We went to turn in the rental car but had so many bags that the Hertz agent just drove us to the terminal to drop us off. Checked the bags, made it through security in record time, and grabbed an early dinner at Wendys in the airport. Charlotte was great on both legs of the flights. Roger saw one of the pilots waiting to board before we left Houston and mentioned to him that we were going home after finishing her radiation. As the plane landed in Atlanta, one of the flight attendants announced "One of our youngest passengers, Charlotte, has recently completed her cancer treatment and we are really proud of her". Everybody clapped, including Charlotte. Yes, we're not really done but that's ok. It's an accomplishment all the same.We had to wait for the stroller on the jetway after both flights so Charlotte waved at everyone leaving the plane and worked on her best flight attendant "buh-bye". We had a very short layover in Atlanta (less than 30 minutes) and both flights were uneventful. We arrived back in Richmond where the temperature is a LOVELY 60-some degrees. SWEET. The outside feels like the indoors in Texas felt the whole time we were there...It's late and it's dark but we already know that our house (and possibly our neighborhood?) has been decorated in anticipation of Charlotte's welcome home. Thanks in advance for the welcome wishes! We are looking forward to seeing everyone in the next few weeks. Unfortunately, we will hit the ground running. Tomorrow will be another long day. Roger will be taking her in early for the MRI, I will be going in to teach in the morning, and then I will meet up with them in the early afternoon to (hopefully) get results from Khan and Tye. Plus I have no idea how long it will take me to unpack, go through mail, and just kinda settle back in. I know everyone wants to see us (and Charlotte). Patience please! We can't wait to reunite with everyone. More updates to come!